My 3 mo X ray - Discs tilted all over the place

[JKDE302]

Steve55 can we get an update? please...

[Cindylou]

Hey Steve,

I was thinking the same thing. Can you give an update? How you doing? Not that my opinion matters, but, I think you went with your gut. And surgery always is a last resort. What a decision to make tho! Kudos to you for getting through a nail biting one. Let us know how you're doing when you can.

Cindylou

[Katie]

Steve,

I hope my post wasn't the one that made you hide away. I truly meant no offence, and it was a quick response from my gut. I was very confused and concerned at Dr. B's response, and reacted accordingly. But my opinion is just that, mine. It carries little weight in this big old world of spine surgery, especially when it comes to your back.

I apologize if I offended you. It was not my intent, and feel free to tell me if you like

I'm sending out many prayers and best wishes for you, whatever you choose.

[steve55]

Thanks for your concern everyone : )

And Katie, no offense taken. LOL. never crossed my mind, your post was perfectly fine.

Well, what can I say? I never heard from Dr B or Dr Guyer. I emailed Dr fenk Meyere about 9 days ago too. Just waiting to confirm Dr B got me the green light to se eDr Guyer at the TBI. But so far, nothing, no contact whatsoever. : (

I called Mark around last Thursday. He was to email Dr guyer himself since Mark is in tight with him. I have emailed mark for updates monday and Today. Still standing by to see what Mark found.

I told Dr B the cold shoulder I got from Dr Ziglar's receptionist and that based on the comment I got, I had my doubts. But Dr B was absolutely 100% convinced he could get me in with Dr Guyer. We'll see.

Regarding my comfort level, well, I have a deep penetrating dull pain that mostly affects me in the evenings. With or without Ibuprofen, its still uncomfortable. It doesnt bother me too bad in the days, but evenings, it really gets to me. If I had to decide today, I would have the revision to fusion. But with pain killers, I can get by ok at nights and still give this time to potentially resolve on its own. But I really want to get in for a 2nd opinion. I need a doc who can order my MRI or CT scan etc so I can have Dr Regan and Dr Guyer give me their opinion on a wait and see approach. Dr Fenk Meyer's original email made it sound risky by waiting, harder revision by waiting. But now Dr B says otherwise. I want to confirm which is correct ASAP. Im still way better off now than I was pre surgery.For example, if I had to live my life with this level of pain, I could. Pre surgery, I didnt want to live. It was constant hell. Pain level in the evenings now is maybe 3. Pain level pre surgery in the evenings was 7-9.

[Katie]

Steve, how are things going? Please give us an update if you can.

[steve55]

Well, Mark called yesterday to touch base. Apparently he has been overwhelmed with his own medical issues as of late which is why it's taken him a while to get back to me. He emailed Dr. B directly and he got a response! Dr. B says he is seeing Dr. Guyer tommorrow in a conference in Vienna at which time he will discuss my case with him. This is big and I can't imagine Dr. Guyer not taking me on if it's a face to face personal handoff! So this is good news after all. I still never heard back from dr b's team despite 2 emails, so it shows what how it pays to have mark on your team. I likely wouldn't have ever gotten the chance at such a discounted surgery with dr Regan if it wasn't for mark either. I may still need that option in the future.

My pain is really quite bothersome and keeps me miserable much of the time. It's like it is affecting my whole nerve system deep down. I feel like i can sense that the culprtit is the C6/7 not the higher up levels. I want this ADR out, as long as this ADR removal and fusion has a good track record, I will do it rather than live like this for 5 months on a wait and see. Dr bitan in NY talked about it as a no risk no worry slam dunk procedure, but mark and even dr b seemed not quite that assured. Dr b did say fusion is a generally safe procedure but he just pointed out the fact that anything can happen.

Ibuprofen and alleve don't do much for me right now. Pain killers do though.

[Cindylou]

Steve, good news that Mark was able to save the day there. I will be anxious to hear what happens after their "conference" about you!! How cool is that? I pray you get this removed soon so you can get on with the job of living your life. God bless.

[steve55]

Katie , cindylou, thx for your interest & well wishes.It gives me more motivation to post updates : )

[JKDE302]

Do you wish you chose a diffrent adr then the Prodisc Nova ?

Anyway I hope the fusion gives your neck the extra stability under the 2 ADRs

Since I can only get a 1 level AdR here in Delaware I think my doctor is going to do a prestige at c4-5 and a fusion under it at C5-6.

If I had the money I would go to Germany and get the new M6 disc at both levels...Maybe my mom will take me over there...Idk

best of luck...keep us updated...

[steve55]

Just got word from Dr Fenk Meyer as follows:

Dr. Bertagnoli did communicate to Dr. Guyer and Dr. Ziglar – they are more than willing to have you in their unit at Texas Back Institute for the revision/fusion of your c67.

More so: Dr. Bertagnoli would like to and is welcome to be present in this surgery.

And as your pain did not come close to zero (in a spontaneous fusion this would have cut the need to re-operate), we recommend this to be done timely.

And I will support from over here with any medical issue open. Wishing you best success!

So, as Mark said, sometimes it takes an act of congress, and Dr Bertagnoli is the congress. LOL

I cant say enough about Dr Bertagnoli's concern in my case. Not to mention that not too many people get a free 45 minute follow up consult at the airport with the greatest surgeon in the world. And the fact he wants to be at my surgery is awesome too. Though, I wonder if he is just darn curious to see the disc for himself and see why it may have subsided? Im told Im the first case of cervical subsidence he has had. It probably also gives TBI more experience with ADR removal perhaps? I dont know, I would imagine TBI has done quite a few of those. Dr B seems to be traveling to TBI quite alot anyways, so I guess he figured why not since he goes there so often.

Either way, it means alot to me what he is doing for me and that counts for something. NOw I just want to get a MRI, a new X ray, and get Dr Guyer's opinion as to whether I should fuse now or hold off and wait and see just a little longer. I dont know what to do, I have improved in nerve pain but developed new pain in different areas along the way. I dont know if thats good or bad. I imagine a MRI and new X ray will really make the decison far easier for the docs and myself.

[Cindylou]

Steve55, you are getting closer and closer to your goal. Way to advocate for yourself. Hang in there.

[dshobbies]

Steve,

After your new set of films, If TBI agrees on a quick resolution as opposed to waiting, you'll have an even clearer idea of what needs to be done.

Without any negative context, sometimes when doctors of varying opinions consult together, they come to a single consensus.

Regardless, glad it's finally coming together. Maybe, perhaps... your long journey may finally see the light at the end of the tunnel. One can only hope.

My best to you, Dale

[steve55]

After giving the TX back Institute a week to get back with me on scheduling an appointment, I called them again today to see what was taking so long to schedule me. Well, they said that Dr Guyer and Dr Ziglar did not come to any understanding with Dr Bertagnoli while in Vienna and that they still wont take me on after all. My call must have triggered something because right after that I also got the following email today from Dr Fenk Meyer

"we just learned that cooperation in your issue with Dr. Guyer TBI is regrettably no longer feasible. Dr. Bertagnoli wishes to re-address Dr. Glen O'Sullivan, M.D., whom he has contacted before."

(Sigh) I just cant see how we went from ......

"Dr. Bertagnoli did communicate to Dr. Guyer and Dr. Ziglar – they are more than willing to have you in their unit at Texas Back Institute for the revision/fusion of your c6/7.More so: Dr. Bertagnoli would like to, and is welcome to be present in this surgery. Yes, fully confirmed, Dr. Guyer will expect contact to be made"

to.....

"we just learned that cooperation in your issue with Dr. Guyer TBI is regrettably no longer feasible."

This situation is beyond words. Im not blaming Dr B as I feel confident he is doing all he can to help me, and Im sure he did have confirmation from Dr Guyer and Ziglar while in Vienna, why else would I get such a strong and solid email confirming the handoff?? I just cant imagine how and why this went from a solidly confirmed handoff, even to the point of Dr B being welcome by them to be present in the surgury, to now once again, TBI wont take me on. That sucks cause TBI is 5 minutes down the road from me and they are under my insurance carrier Humana also. So if I do still end up having revision surgery, its back to having to travel again to Dr Regan in Los Angeles with limited insurance coverage (would be out of network).

Anyone have any guesses? Maybe Dr ZIg and Guyer read this forum and the ADR support forum where I posted how Dr Ziglar's secretary said to me "he remembers you, your the guy who went to Germany, and Dr Ziglar doesnt see other patients from other doctors surgeries" . I also posted/complained about their extensive psych tesing where their Psyche lady threatens to deny your sugury telling you that you may not pschologically qualify for surgury. Ive learned that she does that to most of the patients and so I posted about my frustration with that obstacle. Kathy Earhardt, a member here that many of you may know, said she was actually brought to tears by this lady and her TBI doc cause they said she was too psychologically depressed to have surgury. They have a strong belief at the TBI that if you are depressed or not psychologically well adjusted(based on this lady's evaluation) that you will not get pain relief from surgury and so they either turn you away (as they initially did turn Kathy away over this issue) or they end up making you have extensive psyche sessions of meditation or psychotherapy before eventually getting cleared for surgury. So, I posted about this experience at the TBI and now I wonder if they read it and somehow put 2 and 2 together and realized it was me. Mark already told me he doesnt think they do read these boards, as they dont have time for that and have no interest in perusing these types of spine boards. But I wonder. I guess Im grabbing at straws here as to how this could have changed so dramatically. I dont owe them any money or anything like that. I just dont get it. Just out of sheer curiosity, I hope that next time Mark speaks with Dr Bertagnoli, he can clarify with Dr B whether Dr B really did have a crystal clear confirmation of my handoff in Vienna or not.This is such a mystery to me.

And lastly, given that Dr B travels to the TBI so often, and seems to be so close to them as collegaues(even to the point of suggesting he would be allowed to be present at the surgury), I cant imagine that even if they do read these forums, that they would let something so trivial as a few fussy posts (which were very factual frustrations by the way), get in the way of a patient handoff request by someone so prestigious as Dr B. Wouldnt that be a "slight" of sorts to Dr B??? Truly Amazing.

Anyways, while meeting with Dr B at the airport, I did warn him about the comments that Dr Zig made to his secretary about me as "the guy who went to germany". But Dr B didnt seem concerned and was insisitent he could get me in. He wasnt the least bit doubtful about that. Oh well, I guess that shit happens. : (

[steve55]

Ya know, I recall something that may have potentially been an issue with TBI. I had taken their psychologist's 500 test questionaire and they said the results were inconclusive. The psychologist said it meant I was not consistent and honest with my answers. I guess the theory is that the same questions are asked in different ways, with the idea being that someone could not get away with making up the answers. And one time I sort of aired my concern to Dr Ziglar as to why all this heavy psychology testing was being required. It was a total beat down as far as I was concerned. I mean, I spent 2 hours answering this 500 question test only to be told I would need to take it again because the results were insconsistent. But by then I had decided to just go to germany so I never followed up for round 2 of psyche testing. They take that psychology tests stuff very seriously there and perhaps they feel I failed thier psychology tests? I wonder if that is it. After all, they initially refused surgery for Kathy for that very same reason until she found a different doctor at the TBI who overrode that decision.

[Cindylou]

Oh, brother, what a let down Steve. I am so sorry for this unfortunate turn of events. You could probably second guess yourself to death. Is it feasible for you to make an appt. with Dr. Guyer, so you can have a frank, honest discussion about what/why everything went belly up? If that is possible, I would recommend pursuing it, if nothing else, for peace of mind. And I wouldn't go in there demanding anything, (not that you would) but rather non-defensively asking if he could help you understand his reasoning, and where he is coming from. And maybe even express how you would, indeed, welcome his advice as you move forward with this. (you never know how this may help you down the road) I am assuming the reason you don't want to go back to Germany and have Dr. Bertagnoli do the revision is because of $$ and lack of coverage, correct? I know this is probably way "Pollyanna," however, have you considered asking Dr. B if he would do your revision as a compassionate case, since he did the original surgery and it was within this calendar year? Heck, only 6 months ago, right? Not likely, but what's to lose? He can only say no. Steve, do you have an history of litigation that they may be recoiling from? And lastly, I would like to say that although many doctors likely don't peruse spine forums, I know of a few medical secretaries and support staff who do, and who could conceivably forward glaring information to the doc. I don't want to make you paranoid, because I still believe that anything you said or wrote seemed very benign, in my humble opinion. That's it. Not much help, I know, Steve, but I just wanted to convey to you my empathy and that things do happen for a reason (easier said than done) and that you will get this behind you. Hang in there.

[steve55]

Well, if they wont see me, its unlikely I can get my way in just to talk about why they wont see me. And no, I dont have any litigation history whatsoever. Ive looked up this other doctor's credentials that Dr B is now referring me to and his ADR experience doesnt look too impressive. I think Id rather have Dr Regan do my surgury as originally planned. I was hoping that Dr B might be right in that my neck may adjust and heal itself but thelast 3 days Ive had consistent extreme throbbing pain on the right side of my back just to the right side of C6/7. So, if it doesnt clear up soon, I will need to for sure have this surgury. Its a pretty extreme pain (level 9) but its muscular/skeletal type pain, not the nerve type pain. Im getting a CT scan and new x rays this week for Dr B to review, and Ill also set up with Dr regan to give me his 2nd opinion also. But like I said, if this horrendous pain doesnt subside soon, Ill have to just move forward with surgury w/ Dr Regan.

[Katie]

Dear Lord Steve, I feel sick for you. I can't believe they play with people's lives like this. Actually, I do believe it, as they are doing similar stuff with me at the appeal level.

I've often been worried that someone is reading these posts and started to watch every thing I said, but these forums are the only place to really talk to people who understand. So I tell my tales and hope for the best.

I wish I had some words of wisdom to offer, but all I can do is wish you well, and tell you that I understand your frustration. This system sucks. I wish they taught compassion and ethics in medical school as well as how to cut.

[JKDE302]

After all the nice things you say about Dr B you would think he would just fix this problem for you..I hope after he looks at the CT scan and new x rays he will do the right thing...

[Cindylou]

I'm sorry Steve. Yeah, I hear you. You definitely don't want someone with less than impressive credentials to touch your neck! I don't have any pearls of wisdom either, except just wishing you resolution and pain relief as quickly as possible.

[dshobbies]

What a snooty bunch of snivelling quimbies. Some doctors just act like three year olds and I suppose as long as others are willing to grovel at their feet, they can get away with it.

I have never heard of all this psychological testing just to have a very necessary back surgery. It would seem to me that they're looking to skew the results of their successes by hand picking their patients instead of simply doing the best job possible. I guess that's one way to build a reputation!

Doesn't matter - their refusal to see you is unfortunate and I'm sorry. I'm sure Dr. R will do a fantastic job for you. Perhaps your aunt will treat you like a little puppy and you won't want to return home

I know you're angry but shake it off and just get on with whatever comes next. Easier said than done perhaps but screw it, TBI isn't worth your aggravation anymore.

Please keep us posted - hey - why don't you sell your story to the soaps only don't change the names to protect the innocent. Good luck Steve,

Dale

[steve55]

Well, I'm very pleased with dr b's efforts thus far. Dr Regan's deal is simply tough to beat, I guess cause insurance is covering the fusion part. Even if dr b was able to go from $18k to $10k, I still feel I need a local doctor to follow up with in case problems develop. Also, I've since learned that radiology facilities require a us based prescription for x rays and mri's etc. Dr Regan is well qualified and it's easier to go see him if post op issues occur.


Thanks for the well wishes everyone.

[sahuaro]

Steve:
I've been following what has become your saga and am so sorry you have been put through the mill. Just want you to know that Dr. Regan did my surgery and I know you will be in good hands.
So, now that that's settled, hopefully you can focus on finally feeling better.

[fuzzy]

Thank you Steve for sharing your continued story. It really helps me and others.

I do feel you are on the right track with your concern about local follow up care. I myself have no problem getting follow up imaging studies ordered as my GP does is all for me. When I need xray or MRI, he writes order (and I pay, lol). But in a more complex case like yours its obviously more then just the studies but getting looked after without having to deal with email, long distance etc. The *only* reason I feel comfortable with Germany is that I grew up there as a kid and speak the language. Also have family there. The only thing I still have to contend with is the stressful travel there, especially if there were problems.

[steve55]

The last 2-3 days have been unbelievably painful. Though this recent pain about started about 10 days ago. Thank god for pain killers or it would be pure hell. The right side of my back (around the shoulder blade area to the edges of my back) and my right shoulder are incredibly painful. I get these throbbing pumping pulsations of pain. Every little movement is excrutiatingly painful. Just moving in bed or getting up out of bed is severely painful. Pain pills are the only thing that saves me. I thought I might be able to wait this thing out and I even had some promising days a few weeks ago. BUt this is unbelievable. I guess My ADR is still moving. It will be interesting to see the x rays look. This is so bad, it is convincing me I need to have the surgery. I just pray that its not any of the other discs levels causing the pain. So far, it feels like Im only sore at the C6/7 level and the pain seems t extend from that location.

[Katie]

Oh Steve, I am so sorry, and can certainly empathize with your pain (as can most here)

Is it (pain) worse than before surgery? Any news on Dr. Regan? Your composure throughout this whole nightmare is amazing. I would not be so generous nor forgiving in your place.

You deserve better and I hope this comes to an end very soon.

[steve55]

Well, i'm afraid it is almost as bad now compared to presurgury, it's even more disabling. But it's only my right half of my back, the left side is perfectly fine. This type of pain feels more muscular/skeletal type of pain rather than nerve pain. I guess comparing the two, this type pain is preferable to nerve pain as I can handle it better, but both are disabling. I hope this clears up once the ADR is removed.

[dshobbies]

Steve,

Have you definitely decided on Dr. Regan? When do you find out your surgical date? Can only hope it's soon! You're suffering so

Good luck, Dale

[steve55]

Wow, things have only gotten worse. Just when I said Im not getting nerve pain, I now sense that I do. I have weird pain sensations I never felt before. Its such a deep, deep, deep penetrating type of pain going through my upper back, shoulders, and both arms now. The tiniest body movements give off horrible pain.WHen I get up out of bed or a chair, I get incredible excrutiating throbbing pain(pain level 9) as if my nerves are so sensitive, that each pump of blood causes pain. I personally feel that the disc must be grating into the bone or a nerve. This is a new ball game now.

Problem is, Dr Regan doesnt get back till next Monday. The Hydrocordone/ultracet/ibuprofem combo only reduces the pain by about 70% and for only 5 hours at a time. Im going to try to get in again today to the local orthopedic surgeon who gave me my x ray prescriptions. I wonder, can he give me something to stop this incredibly sensitive nerve pain? And if so, is it a good idea to wait for Dr Regan? And then who knows how long it will be till he can get me in. As bad as I am feeling, Im afraid I may have no choice but to have a local surgeon do it here. I dont know any surgeons here in Dallas who have ADR removal experience, other than TBI and Peloza who both wont see me.

[Bill1961]

From following your posts your going thru more than any one should be. I don't get the facination with names (Bertagnoli, Regan, TBI). I'm sure there great Drs., but there are many good orthopedic and neurosurgeons out there who put in and take out all types of hardware, perform reconstructive spine surgery etc...

I understand the reason why you would want an experienced ADR surgeon to put one in. But to take one out. From an experience point of view, how many of these have been taken out? Probably not many, so what experience can there be.

Maybe you should try and look at this as a piece of metal in your spine and you need help to get it out. I would think that if you have a good local Orthopedic surgeon, he has removed more hardware from patients than any surgeon has removed ADR's. Is that experience something that can help you?

Try and help yourself and your suffering. Time could make your situation worse. You've waited long enough for the German gods....

Sorry for being direct but I feel for you and what you are going thru. No one will take better care of you, than you.

[Bill1961]

Forgot to add..

While your searching for a surgeon, to me the more important question is not "can you get the disk out?" Due to the degree of subsidence, can you reconstruct my vertebra so that I will have a successful fusion and a normal curved spine?

This may or may not be the case with all the "experienced" ADR removal surgeons.

[steve55]

Excellent point Bill. Im now starting to agree. I just spoke to mark about this and he kind of said the same thing in that there just aren't that many ADR removal cases out there. It is more important that the surgeon is good at the reconstructing part.

But now my delemma. How do I go about finding a good one that is in my Humana network? The Ortho I saw today is Donald Mackenzie. He is English and about 55-60 yrs old. He knows Regan (even told me to say hi for him when and if I do see Regan). But he did make the comment that if he had a spine problem , Regan would be the guy who he'd choose. But again, if what I need is pretty straight forward, basically a fusion, then cant any descent surgeon do the job? So, perhaps you are right, perhaps I dont need a "Big name" surgeon for what I need done.

[steve55]

How does one go about finding out whether a doctor is good or not?????

[Bill1961]

Steve,

I don't have a clue and would hate to steer you wrong about good surgeons in Texas. However here is a place outside of Dallas (Tyler TX) Texas Spine and joint hospital. Spine,Neck,Back,Shoulder,Hip,Knee,Wrist, Neurosurgical and Orthopedic Surgery - Texas Spine & Joint Hospital

I would imagine a practice of their size, there must be some pretty good Dr's. They have both Orthopedic and Neurosurgeons.

A phone call and appointments to a couple of places can't hurt. If you call for the appointment and the particular surgeons date is out 3 weeks or more ask to see if you can have an appointment with his/her PA. They are usually pretty easy to get to. Then when you show up with your films and they see your situation I would bet the PA heads right to the surgeons office. If the PA is on the building so is the surgeon. Most do surgery together.

[Michelle Maree]

Sorry to have to be so blunt but in my opinion -Go back to Dr Bertagnoli.

[Michelle Maree]

I dont understand why you havent already booked a surgery date with Dr Regan.
It sounds as if everyone is stalling and passing the buck and no one wants to help you. Have you tried to book a date with Regan yet? Or do they always seem to delay you and say "let me get back to you about that first or so and so's on holiday at the moment and wont be back untill such and such." This kind of behaviour is typical when they dont want to do the surgery.
I know, it has happened to me, and when you push to make a date you get "The Letter".

This may not be the case but it sounds far too familiar to me.

Also I doubt very much they are interested in reading these forums, they are on the other side of the coin, and are far to busy playing golf and holidaying in the Bahamas.

IMOA lock in a date with Regan now!
Or book the first flight to Germany that you can before it is too damn late!

I am saying this because I care,
Michelle.

[Bill1961]

http://www.adrsupport.org/images/uploads/Dr_Z.pdf

[Michelle Maree]

Can I ask your motive in posting this information BILL?
I dont understand what you are trying to say by posting this information.
Are you saying that Dr. Bertagnoli is not responsible for the mess that Steves neck is in?
How many times has a three level cervical prodisc been performed and how successfull have they been so far? My guess is not many.
Steve has been a willing guinea pig for a procedure that is not yet approved in your country and now that he is in strife everyone seems to be stalling him and passing the buck untill it becomes so bad an emergency that he has to take the first surgeon available at his local hospital.
Its disgusting and if I were him I would get to Regan ASAP and PRAISE his generosity or I would get on the first flight back to Germany and make Bertagnoli fix his mess!
He most definately needs someone experienced with ADR removals or he may be left a quadreplegic for life!

Sorry to scare you Steve, but I think you need to question BILLS motives here and take the removal of your neck ADR very seriously and it sounds as if you are running out of time fast.

I DO CARE!
Michelle.

[Bill1961]

Actually what I am saying is that some people are putting to much faith and trust in some Drs. A good Dr. should have recognized Steve's condition after the Xray showed subsidence and clearly explained what Steve would be up against and a course of action.

The attachment I posted clearly explained from a Dr. Zeegers point of view what a Dr. should do with disks that subsided. His recommendation was to "perform a vertebroplasty to stop the problem and pain." Not sure if he's correct or not, but he does recommend a course of action.

My feeling is that Steve put trust in others while others may have not taken his condition with some level of responsibility and compassion. So when I read his posts and the pain he's going through it seemed to me he needs a Dr. to help him, not stall him.


So to answer your question "what's my motive?" I thought I mentioned it in the previous post...Stop waiting for the god's and take charge of your condition.

As for experienced Drs. There really are a lot of very good Drs. out there. You just have to work hard to identify the best ones.

Both you and I feel for Steve, our philosophy is just different. You believe in going back to Germany, I don't. His condition could be one that the benefit of a local top notch surgeon far out ways the experience of an ADR installer.

As for Dr. Reagan, to me that would be a very good option.

I'm sure Steve has spent countless hours researching his options and will find the one that works for him.

Now let's take a deep breath....

[Michelle Maree]

Spending some time to read the length of this thread. I believe that Dr.Bertagnoli and his "staff" have been telling Steve lies the whole time. Playing smoke and mirrors with Steve all along, telling him things like Dr. Guyer and Zigler at TBI are interested in helping him and that Dr. Bertagnoli will be at the surgery I believe were all complete lies. When Steve spoke to TBI they had no interest in seeing him whatsoever.
Dr.Bertagnoli and his "staff" know full well that Steve needs this thing out and I believe thay are stalling him so that he doesnt have a chance of getting to Germany on time and does have to settle for someone qualified for the job. Then no ones "name" will be soiled.

I believe it is probably more important that you get someone highly qualified to take it out than to put it in.

I reiterate again Steve, lock in with Dr.Reagan or go back to Germany and quickly!

This is dangerous stuff and I will take a deep breath when this poor man is looked after Mark!

[Michelle Maree]

And this is the reason why most of the members have left this forum and gone and created their own. Because this site is no more than a Prospine scam! And I am sorry it has taken me so long to realise it.

[jessmith07]

Michelle,

I know that I haven't been on much lately, but I'm trying today to get caught up.

I am a patient of Dr. B's. I have met him and his staff. They are incredibly caring people. Dr. B has an EXCELLENT reputation, and that's why I chose him, after extensive and exhaustive research on other doctors. But even the BEST doctor's in the WORLD, regardless of their specialty, have some negative outcomes...and judging from the research that I've done, PRIOR to my surgery, regarding subsidence, it can happen, even with good bone density, at any time, and therefore can be unpredictable. I don't feel, and I think Steve will agree, and he's the one going through this, that there was any incompetence involved in his original surgery.

Unfortunately, he's now having issues. It happened after 3 months, but it could have happened after 3 years. He's gotten conflicting information, and decided to wait and see, as at the time he had the airport appointment with Dr. B, it appeared things had stabilized. Dr. B is trying to help, but IMHO, the US doctors are being wishy-washy (to put it nicely). He's going through a very scary and confusing time, and he's in pain to boot.

Your anger at Dr. B is your right, I suppose, but to publicly post that he and his staff are incompetent liars is too harsh a judgement. This man has given me my life back (and it cost me my job), and even if my 2 discs subside tomorrow, I've had 3 pain-free months with my family...for the first time in years...and I wouldn't trade THAT for the world.

[dshobbies]

Michelle,

You're very angry and I'm at a loss to understand why. Dr. B is, along with Dr. Z, considered the best ADR surgeon in the world by many. Of course not every surgery is 100% successful and some are complete failures. I doubt any surgeon in the world can make the claim they've never had a failure.

We naturally recommend even a plumber who we feel did a great job. Why would you think this forum is a Prospine Scam? What exactly do you think our motives might be and what do you think we have to gain by recommending a doctor who has the best reputation, is caring, has a great record and for those who don't have insurance coverage, is half the price.

When I recommend Dr. B because I'm happy with my ADR results, even though it left me with other disabilities, do you really think I'm scamming someone or have other motives? Do you think I have an agenda to push? Couldn't it just be that I do care and want the best for whoever is on the other end of this forum?

And just for the telling, I don't personally care for Dr. Regan but I think his surgical skills make him a top L.A. surgeon. Without singing his praises, I still recommend him to anyone needing his talents. Do you think he hasn't had his failures?

I fail to understand your motives. We're here to help and support one another. There is nothing hidden and there are no scams. What could we possibly have to gain?

Dale

Dale

[Bill1961]

I don't feel Michelle is being unreasonable in her remarks. She is expressing her opinion on a situation with an adverse outcome that touches many of us.

When we think of medical care it's not only pre-op, but it's post-op as well. Granted all surgeons can have some number of poor outcomes, but the real test in their character is what they do for the patient when things don't go as planned.

As I do my research in ADR I'm finding one consistent message. Every Dr. who has done some large number of ADR's is the "best" by some group. Maybe it's true, maybe not.

The patients who show support for a particular Dr. typically have had a satisfactory outcome. They rarely ask themselves "did I get the optimal outcome?". The ones who have less than desired outcomes can become critical and that's completely understandable. Some # of them are the victims of their own genetics, some are the fault of the surgeon.

In this particular case could it be genetics? Or could it be the surgeon who brought a patient from a 2 disk procedure to a 3 disk procedure? Maybe with out an appreciation for additional risks. No one really knows.

Many of us are in pain or recovering from pain. We all have strong feelings because of our situation. Maybe to our fault we grasp to easily what we feel is a fix. When in reality where playing a game of chance? That game is very attractive when we are in endless pain and suffering for years.

Someone once told me "only do what's symptomatic. Never take on any additional surgery that can not be confirmed by your symptoms first, then imaging and additional testing.

This same person also told me "You can not replace what god gave us so easily".

I would like to touch on Michelle's comment about Pro Spine in a new post.

[Bill1961]

I have rarely posted on these boards but as I read along I learned the names and stories of some of the players.

Correct me anytime I am wrong.

I'm guessing this site is run by Mark. Mark appears to be very knowledgeable about the world of ADR. He is also in the business of bringing patients to particular Doctors. His top recommendation for ADR seems to be Dr. Bertagnoli.

With that said, Mark has also helped many people on this board. So if you connect the dots, I could see why this board could have a bias towards Pro Spine. Intentional or not.

As a individual we need to learn from others experience regardless of their alliances. Then as we become educated about our condition and options make the best decision for ourselves.

Before I made my surgical decision I read the boards, talked with many success stories, a few not so good. Then I spoke with US based surgeons about particular Dr's performing ADR and their personal experience with these ADR doctors. I thought I covered every base, but I still missed a few. I know more about ADR and spine care than I care to. But now it's a way of life for me.

[Michelle Maree]

Well, we will see what pans out for Steve.I hope for his sake it goes well.

I hope he takes his ADR removal extremely seriously though, because it is,it is going to be a life and death situation for him, and he seriously needs to consider his potential quality of life thereafter.

Steve seems to be quite an impressionable man, and I am worried that he will be steered in a direction that will not have the best outcome for him in the end.
I do think that Dr. Bertagnoli is responsible for Steves problems because of the plain fact that a three level cervical prodisc is "experimental" is not approved in the USA, UK, Australia or from my knowledge anywhere but Germany where you seem to be able to do anything you want and not remain accountable for it.

So if this "experiment" has not been successfull, then whomever performed it should fix it , period!!!

And I believe this is precisely why Dr.Peloza and others like him dont want a bar of it.
Three levels have not been tested to be safe and replicatable for the general public.

And the fact that Germany is so far away assures this lack of accountability, in my mind. I mean, once Steve is in 10/10 pain again is he then going to organise a trip to Germany? Noooooo! He is going to accept the first offer he can, which is looking few and far between at this point.

It is starting to look like another "Anastacia" case.

And if I was him and could get back to Germany in time then I would and I would hurry!!!

[Michelle Maree]

Can I ask you BILL? Why you think Steve55 should NOT go back to Germany?

[Michelle Maree]

I would seriously doubt that Dr.Bertagnoli has any interest in fixing Steves neck at all!

I would urge everyone to read ANASTASIA'S JOURNEY-ADR HELL. Link below.

http://www.geocities.com/javanoginn/...tyasFamily.htm

I have said my piece and now I think I will speak on a forum that is not sponsored by prospine, has no alterior motives, is run by patients for patients, moderators dont assume alias', no money is being made off members and where everyone is welcome whether they got their operation in Stenum or Wherever.

Thankyou and goodbye.

[Bill1961]

Such a sad story, poor woman.

I feel bad we're going back and forth on this probably increasing Steve's stress level. Both case are very different (cervical vs. Lumbar), but it is a sad example how things can go wrong.

The main reason why I wouldn't go back to Germany:

We all take a chance with ADR, especially mulit level. If our "gamble" fails it may be time to stay home and get fixed with proper follow up. I would imagine a multi level fusion would require consistent follow ups to be sure everything is going as planned. This way if there are any problems they can be addressed immediately and by the surgeon who performed the surgery. Being seen by an overseas Dr. at this point really isn't practical in my opinion.

As I stated earlier on I am sure Steve is doing the proper research and coming up with a plan that will work for him and hopefully with great success.

As an FYI I have met a few 4 level cervical fusion patients all with great results and no pain. Great lateral movement ,minimal up and down. Living absolute normal lives. And given the choice again, recognizing they have multiple pathology they would do a fusion.

[steve55]

Interesting conversation here. Anyways,....soon after my last post, I remebered that I had saved "D" Magazine's edition of the best doctors in Dallas (as voted on by their peer physicians). And one of the handful of spine surgeons listed just so happens to be in my humana network. His name is Luis Mignucci. NeuroSpine Surgical Consultants - Luis A. Mignucci, M.D.

The only problem is that they are 3 weeks out for an appointment and despite my terrible situation and pain, apparently there is nothing they can do to bump me up or fit me in sooner. However, Im not giving up. I just faxed over a request to them once again asking that they find a way to work me in as I am in bad shape even with the Hydrocordone and ultracet. It even hurts to just walk.I explained I dont want to risk any permanent nerve damage by waiting so long to get in. We'll see what happens.

Interestingly enough, my current ortho said that based on what he sees in the films, I am in no immediate danger of any kind. He didnt seem worried at all. And like I said, he seems fairly on the ball too. I just think Dr Mignucci has better credentials and I trust him more because of that.


My plan is to ask Dr Mignucci for his honest opinion as to whether or not it is important that I only have this surgery done by the very most high caliber and experienced surgeons such as Bertagnoli and Regan or if any surgeon who is good at what they do will do. Bill may be absolutely right when he says that there is no need to have to travel so far and pay for these surgeons (bertagnoli and Regan) when this is basically a simple extraction and fusion procedure. I want to know if the cervical ADR extraction is a extremely risky and difficult process or if its a process that most of our local surgeons can handle. This Dr Mignucci has more than enough business and I would expect he will be very honest with me about that answer. As it stands now , I plan on having Dr Mignucci perform this surgery. Now, if he tells me, "Steve, this is a very complex and risky procedure such that you really need the absolute best surgeons such as bertagnoli and Regan" then I will take his word and go see Regan. But Im suspecting that a cervical ADR removal is something that any good surgeon can do. Though I will prefer that the surgeon have some experience at removing ADR's of course. I think its the lumbar that is so risky and complicated, not the cervical. We'll see.

As far as the reason fro Dr Peloza and TBI not taking my case on, its not due to their worry about this being 3 level and experimental. I dont buy it. I think its because they are resentful that I went overseas. As Mark said, they are indeed in competition with each other for the business. We must all remember that unfortunately, money turns the world and is at the source of all greed and selfishness. One reason that backs this theory up is that my current Ortho, Dr Mackenzie was very positive about wanting to perform this surgery, actually he was quite perky about it. I almost felt bad telling him "no" for now. And I suspect Dr Mignucci will be too, but we'll see. If Dr Mignucci does have the same desire to do this surgery as Dr Mackenzie, this will prove my theory with 100% certainty. That theory being that its nothing more than resentment that Dr Peloza and the TBI refused to take me on. Not only refusing to, both were quite rude to me. Dr Peloza wouldnt even answer my questions and neither was he willing to suggest a local surgeon. And if you may recall, Dr Ziglar at the TBI commented "oh, I remember you, you're the guy who went to germany". I think these doctors get really tissy about their former patients going to other doctors for a surgery instead of choosing them. I think its a total EGO thing. Its pretty sad.


Anyways, thanks for the comments folks.

[steve55]

Wow, I called into the physician asst (PA) and asked her if Dr Mignucci did ADR removals and how many prodiscs he has done. After all, I didnt want to wait 3 weeks only to find out that he didnt do these. Well She said he has done several on his own and has assitsed on several. I also advised the PA of my condition and that I had nerve pain and how it even hurt in the front of my shoulders to simply walk etc and that I was worried about potential permanent nerve damage by waiting 3 weeks in this condition. I advised that if the Doctor felt waiting 3 weeks to see me was going to be ok and that I was in no danger, that Id feel alot better about it. Well, she called me back and said he made time for me to come in on monday at 3pm!! WOW! So, Im in!! He surely knows I need this ADR out and it looks like he has no issues with doing the surgery. We'll see for sure this monday when I see him. But its looking more and more like these doctors simply resent a former patient going overseas for surgery once the patient has seen that doctor first. I guess its a slight to their egos. Many of them are sooo sensitive huh?

[Bill1961]

Steve,

That's great news. I hope he is more than willing and confident he can get your life back for you. Keep us posted. Unfortunately a draw back of ADR is that there is no closure. Problems can arise at anytime. So to know the DR.'s who are capable in adverse situations is a great benefit.

[steve55]

I saw Dr Mignucci yesterday, and man, does he ever want to go to town on my neck. LOL. He says I need to take out ALL three prodiscs and fuse at 3 levels. He specifically said that I dont have enough vertebrae left to support any prodiscs at the C5/6 to C6/7 vertebrae. He says the C5/6 disc keels will crack the vertebrae below it, and we need to fix it now in one surgery or else Ill just end up having another surgery later. He also noted significant bone spurs at C5/6 which he believes are causing my current problems also. I believe I even heard the word corpidectemy or something like that too. I do know it would involves accessing my spine from both the anterior and the posterior positions, maybe he wants to put plating on both sides, I didnt quite get it all. Ive heard posterior approaches are a bitch to heal from. And I havent heard good things about 3 level fusions, and lastly, he says we must use autograft, as in my own hip bone as it is the only way to assure proper fusion in this kind of extensive procedure.

The last doctor I saw, Dr Mackenzie simply went along with what I told him Dr B had said I needed which was a C6/7 ADR removal and fusion.

This Dr Mignucci has made Dallas' prestigious Best doctor list 4 years in a row. He is one of only 4 in there for spine surgeons, along with Dr Peloza. So, he is no fly weight and supposedly is one of the top dogs. So the fact he says I need such a major overhaul is concerning.

I plan to go ahead and get this mylogram done as he suggests, and then send his written recommendation along with the new Xrays, CT scan, and mylogram to Dr Regan and I think Im going to follow whatever advice Dr regan gives. ONe thing for sure, every doctor here I have seen all know who Dr Regan is, with Dr mackenzie saying Dr Regan would be who he'd go to if he had a back problem. I do believe Dr Regan will decide it for me. He will have more than enough in his hands to make a good decision.

Meanwhile, the pain level has gotten better lately, Ive had no pain attacks and the fornt of my shoulders dont hurt anymore when I walk. However, my forfingers of my right hand are now going numb by about 50%. This is a first for me.

[steve55]

Forgot to mention that Dr Mignucci did confirm what I always suspected all along about my C4/5 ADR. It aint movin at all. All my x rays whether I am looking up or down, all show this disc always in the same position which is the ADR closed on one side and opening up on the other side. Basically its not sitting right, and its not moving at all. Its acting like a fused disc in a sense. Dr Mignucci confirmed what I have always thought, only my middle ADR is functioning as it should as it does shows it settles in various positions based on different x rays shots.

[dshobbies]

Steve,

I feel so bad for you, facing another difficult surgery with the disadvantages of fusion.

I think the question still remains, are you going to go with Dr. R or will you allow the new Dr. M do your surgery with a consult from Dr. R? Also, when is the biggest question?

Well life is full of ups and downs. This is your down which I'm sure will be followed by a very long up.

You are very definitely in my thoughts, Dale

[steve55]

Thx Dale.

Dr B has offered to perform/assist my surgery in Michigan but the doc who it would run through doesnt carry my insurance so it will be at least $6K. I can go to Regan for $10K. My concern is follow up. The doc who would be doing the procedure with dr B in MI , well, Im not sure how good he is and if something goes wrong or I need additional diagnosis, I think Dr Regan would be the better local option. Every doc I see here knows who Dr Regan is!! And that says something. Dr B is the master at inserting multi level ADR's, but now when it comes to removing them, well, I think Dr Regan may even have more experience than Dr B from the research I have done. And after talking to Mark again, Im back to believing that a ADR removal isnt so straight forward as I thought and that you wouldnt want just any ole doctor who has done a few to perform it. So, Im reconsidering having a "IN network" doc do this just to save a little money.

So, in conclusion, I am leaning heavily towards paying the $10K and getting this done with what is probably not only the most experienced ADR removal surgeon in the world, but probably also one of the best all around spine surgeons in the world. I know Dr B is also a great all around surgeon, but again, I want good follow up locally here in the USA. Dr B is mostly in Germany so it doesnt work so well. Ever since this DR Mignucci has told me my issues now go far deeper than just a ADR removal, Im back to seeking a all around expert, not just a ADR expert.

Lastly, Kudos to DR B who is really trying hard to get me on the books with him here in the US. It shows he has interest in fixing me. Thats a sign of a caring doctor. I know some say he should fix it for free liek stenum, and maybe those people who say that have a point. BUt at the very least, Dr B is concerned with my well being and has a desire to rectify the situation.

[steve55]

Looks like the vertebrae is too thin between the 2nd and 2rd disc huh? Thats why the surgeoin here in Dallas says it wont hold and both ADR's , possibly all three have to come out. (SIgh). He says heis so certain about that, that he wont do my surgery with only removing and fusing the C6/7. ANyways, Im just now waiting on mark to try to confirm a phone Consult with Dr Regan so I can see whose opinion seems more correct. Dr B just says I only need to replace the subsided disc and the remaining thin vertebrae will hold fine. The dallas surgeon says gotta remove the thin vertebrae between the last 2 as no way it will hold. I hope Dr B's recommendation is right, and if it is, I would think Dr Regan's opinion will match up.

[SandyW]

Steve,

I''m amazed that you stil trust Dr. B. I'd feel the same too. He fixed me and so many others. He's human, don't know whether your problems are because of a mistake he made or just the one in ?? that can go wrong for some reason.

On the other hand, I think you are wise for getting a doc in the States. The only down side in having Dr. B do surgery is the fact it's too difficult to do follow up (unless you can afford lst class trips back and forth to Straubing). And because of the ego's of some of our surgeons (my initial doc told me he wouldn't touch me with a "ten foot pole! "I told you so!" when I wentforfollowupappointment- after a personal call from Dr. B asking him to see me.)Duh!

Dr. B seems to be cooperating and doing all he can for you. I don't imagine it would be easy for him to convince a hospital/doctor to let him do surgery here, I sure there's lots of red tape.

Back to your current problem - imho, I would still go with someone who is considered one of the best. You chose Dr. B for that reason, I say stick with Dr. Regan. You're not that far from Californiaand your spine is very, very important. I remember someone saying they's live in a tent if necessary to get the best treatment. Any way the best of every thing. God Bless and you're in my thoughts and prayers. Sandy

[dshobbies]

Steve,

When I saw your post I was hoping for a surgical date, like next week!!!!!

I saw your MRI and my untrained eye didn't see the too small vertabre? But than again, I did mention my untrained eye and Lyrica played havoc with my eyesight anyway.

I hope Regan responds soon... you need to get this done.

Dale

[Bill1961]

Steve,

If the vertebrae are now "thin" one question you may want to ask... Is the surface of the vertebrae now to small for the ADR in place?

[mmglobal]

If the picture you uploaded is being used to demonstrate the 'thin' vertebrae, then we need to understand what we are looking at. That image is not a good a/p view of the area we are trying to see. It is very oblique.

If you think of plates for the prostheses like coins, when you are taking an a/p view, you want to see the image of the prostheses from an angle that shows a 'horizontal' view of the plates. If you take a picture of a quarter from a horizontal view (from the level of the table, with the quarter laying flat on the table; it will look like a line. If you take a top view, it will look like a circle. If you take an oblique view it will look like an oval.

When you are looking at an oblique view, there is no telling how those plates are sitting on the vertebral bodies.... you can't tell.

mark

[trkdoc714]

This will probably upset some people but here's my humble opinion:

First of all this is advice I would give to my son or my brother and it's intended to assist you in putting an end to your pain.

Why would you want to continue down the same path that's led you to where you are now? Your original surgeon has obviously turned his back on you. You went there for a 2 level and he gave you 3. The pathology may or may not have been present to perform such a risky surgery but especially with an unproven device (Nova). You also keep going to the same people for advice. These are the same people that aimed you down the path you're on now.

The process to implant both ProDisc and the Maverick both destroy bone to be implanted. The Nova destroys twice as much since it has two keels. The bone on 6 vertebral surfaces has been severely damaged and weakened the structures. I would hope a competent surgeon (and his medical tour guide) would have the character to admit their errors and point you in the direction to get you healed and not a direction to save them the embarrassment of having to admit fault.

I don't post here very often as I'm sure most know of my opinion and disdain of the purpose of this forum being for a business opportunity and not the well being of spine patients.

Bob

5 Months, 5 Days from successful Maverick ADRs at L4/5 and L5/S1 at Stenum Hospital by Dr. Karsten Ritter-Lang.

[dshobbies]

Yes Bob,

We all know your opinion and instead of offering anything constructive or positive, you choose only to provide negative and insulting posts. Though I usually refrain from these types of comments, you are not as asset to this forum or those posting here.

I believe Steve has made his point of view perfectly clear and if he or his 'medical tour guide' honestly believed an error was made and that this was not just an unfortunate happinstance as opposed to medical misjudgment, they both would be just as forthcoming.

Your posts serve no purpose here. This forum is about an exchange of ideas, suggestions and support. You provide neither. Your only purpose to post is to insult. You are the one not contrbuting to the well being of anyone, be it a spine patient or otherwise, for very selfish reasons. Negative criticism is useful when provided for the betterment of other posters but not when used for spite and maliciousness.

Mark, I know you don't taking banning posters lightly but this man contributes nothing close to the intent of this forum.

[Bill1961]

Maybe Bob's approach is a bit aggressive, but maybe he's trying to get Steve's attention. You have to admit if you brought your dog in for a surgery and you had this type of an outcome would you go back to the same vet.?

With that said this forum does put Dr. Bertagnoli on a pedestal. Many times I see postings as the "great" Dr. B., "The worlds best surgeon Dr. B." He may be a great surgeon, the are a lot of very good surgeons. I would say he is probably an outstanding representative for Pro Disc. Most of his trips to the states is probably somehow related to Synthis Pro Disc training. I doubt it's to train on another product. Of course this is just my observation.

So if everyone keeps calling him the "best", a patient could hold on to false hopes. In Steve's situation, his neck is messed up. No question he needs a very good surgeon. If I recall correctly he was close to getting in with Dr. Reagan a couple of months back but held off because Dr. B. recommended massage therapy.

So just recapping, the guy pays x dollars for 2 disks and that's changed to 3, he has a subsidence issue and Dr. B's assistant says it's urgent he goes back to Germany, then Dr. B. thinks it's not that bad and a massage is the solution. Now he's in great pain and desperate and still the go to guy is Dr. B.?

If anyone wants to give advice for a particular Dr., in this case you may want to throw some names out for Dr's who have performed extensive reconstruction. Again I am not questioning Dr. Bertagnoli's skills and I'm sure he has many successful surgery's but it may be time to get a couple of independent opinions. It seems like Steve has got one in Texas and now he'll get one from Dr. Reagan. So hopefully he'll make the best decision he can.

Everyone with an ADR is a pioneer. There will be many successes and many failures. This board should allow people like Bob to speak their mind. We can't all drink the cool aid.

[Katie]

Bob's statement wasn't so much negative as realistic. He's just pointing out the facts, and that may help Steve take another look at where he is heading. I think the Dr. Regan plan is in his best interests, and I hope he finally gets the deserved relief.

Steve, you almost sound Canadian, as we apologize to people who step on our toes, just to make sure no one is offended ;-) You have so much resting on this decision. Please go carefully and niceness be damned.

[steve55]

Well, I'm not at all offended by any of these opinionated posts. I did my homework prior to going with dr b. I saw way too many success stories to doubt his skills. I had a extremely hard time finding any negative outcomes on dr b. But somehow, I just had to be that rare statistic. I've been telling mark all along that I am leaning heavily with whatever dr Regan recommends. I got a quote of 23k for that surgery in MI with dr b for which I have a &6k deductible and a 70/30 out of network split. Also, dr b is not charging anything for his services. I believe syntheses is somehow reimbursing him something for the revision. Given that my humana reimburses at Medicare rates, it's likely I'll end up paying $15k or more to go this route. Dr Regan's quote has already confirmed $10k out of pocket after doing the preauthorization with my insurance. I guess I'm still leaning heavily with dr Regan. Mark is almost done uploading my images after which he will email dr Regan for me so I can get a phone consultation lined up, then maybe a surgery date.

[trkdoc714]

As stated "this will probably upset some people". I'm sorry constructive advice was taken poorly by some.

Steve has shared his story with us and I think we can all feel his pain and empathize with his situation. My advice is heartfelt and intended to let him know there are people that care about his getting well.

The bias of some on this forum is well documented. No criticism was aimed at Dr. B for implanting the ProDisc upside down, another doctor was demonized for supposedly doing the same thing with a Charite.

I don't feel comfortable sharing my success/ recovery story on this site due to the biased attitude of some. I've received fairly nasty PMs after I've aired opposing statements and ideas to the advice given to some of those struggling with their pain. I'd love to share the story if for no other reason than to give others hope, not advice on which doctor to see or disc to choose.

As you are a director Dale, I would hope you would be more in tune with letting all opinions air on this open forum rather than suggesting banishment for someone that holds opposing views. If you'd rather have me banned than consider the opinions I hold as having some value for others, so be it. After all, why would anyone want to hear from somebody that had successful surgery at a non-GPN network surgeon?

Again, I'm sorry if anyone took offence from my advice aimed at helping Steve. I have 7 children/ step children and this would be the same advice I'd give them.

Bob

[Kathy]

Steve,
I haven't been on this site in months, therefore don't really know what all is going on with your spine. I don't have time to read the whole thread; but will later. I just wanted to let you know that I live very close to you and would be more than willing to help you in anyway I can. Please send me a pm and I will do whatever to help, if that involves an ear to listen, going to see a specialists with you, etc. I stay at home with my kids (one is in school 5 days a week, the other goes 2 days a week), so I'm available pretty much all the time.

To the group,
I would like to address what Bob said. I completely agree with him. I also haven't been on here or sharing my recovery story, because I felt like Dr. B was on a pedestal and that since I didn't use him that I didn't qualify to be in the "in group". I also had some mean things said to me by members of the forum. I have talked to other members who have had the same thing happen to them. Whether this is intentional or not, it is still hurtful. I think everyone needs to be hyper-aware that we are all looking for answers and though we may have the same issues, we are going to come up with different solutions, and we need to respect others decisions and support them regardless of who does their surgery, where it is done or what is done.

Just my opinion,
Kathy

[dshobbies]

Bob,

I do not object to you expressing your opinion and/or suggestions as long as your intent is constructive. Unfortunately, your digs against Mark appear alongside your heartfelt compassion. You don't have to like the man or agree with his politics but as I've asked before, if you want to insult him, please do so privately. As Kathy stated, mean statements are hurtful. I would ask and expect the same decency from anyone posting on a public forum.

You should also know that I have absolutely no involvement with this forum other than as a member, just like you. My objections to your posts are as a reader, nothing more, nothing less. I would offer the same objections when directed against anyone.

Your motives do not appear to be altruistic. If you would like to discuss this further, please either PM me or start a new thread. And if you'd truly like to share your story with others, please leave out the offensive comments. I believe we'd all like to know how you're doing.

Dale

[Kathy]

Originally Posted by dshobbies

Bob,
As Kathy stated, mean statements are hurtful.

Let me clarify, I was not referring to Bob. I was referring to members of this board who said mean things to me and to others because we did not use Dr. B. One person was told that their disc failure was their fault, because they didn't use dr. B, this is ridiculous. We all make the best decision for us, that we can, with the information we have. Others should respect that decision.

I, personally, did not find Bob's comments offensive. He expressed his opinion, just like we all do everyday. It's not like he is trying to trick anyone, deceive, etc. He said what he thought, and we can chose to agree or disagree. There is no reason to get angry, it's just his opinion. I think the suggestion of banning him defeats the purpose of a forum where opinions are expressed everyday. That would be like banning someone because they only believed in fusion and you only believed in ADR, it's just a difference of opinion. Last, the reason most of us came to this site, was because we disagreed with the banning that happened on adrsupport, when people weren't allowed to express their opinion (and you can see it is now a ghost town). Banning does not help anyone, and just takes valuable people and input away.

Disclaimer: This is obviously, just my opinion and should be taken as such.

[fuzzy]

I never felt that I should not be on this forum because I don't use Dr. B. or even Mark's services. I didn't realize and don't see anywhere that there was such restriction. I never was told to go elsewhere because I feel a different surgeon is better for my job. Also I have made all my decision based on what I got from the surgeons themselves and their related specialties in addition to studies and would go to Ritter-Lang at Stenum if I felt his plan for me is one I agree with before I leave on the airplane, based on broad research, not just this group, or even Marks opinions in that particular matter.

I am absolutely sure Steve does the same. He researches and shares here his story, in hopes of helping others. Maybe picking up good advice from fellow spineys along the way (hopefully good words, not nasty things) There is absolutley nothing wrong with considering going back to the surgeon that did the troublesome surgery and I see nothing wrong with how Dr. B, offered to do a revision or even suggested to wait a little longer to see if there is improvment. There is also nothing wrong in getting a true second opinion from a top expert closer to home in the form of Dr. Regan.

I don't see anythng out of the ordinary in regards to the support that Mark may be providing. I am pretty sure Steve is an adult and capable of making educated decisions.

No one needs to be banned. Careful with some allegations or come up with facts!

[steve55]

Yea, I really dont see anything wrong with the strong opinions here thus far, certainly nothing was posted in this thread that deserves banning anyone over. I guess there are some accusations that Mark and this forum are biased to the point of pushing things or certain doctors on people, and I guess I can see how that will upset some people (who are friends of Mark) here who are offended by such an accusation towards him. I personally havent experienced anything like this from Mark. But I think the doctors he promotes seem to be the world's best in my opinion. Dr Regan for example, .....My local orthopedic surgeon said "I would go to Dr regan if I had have surgery for myself, he is one of the best in the country". He said that without mark's help, ok, LOL. He also said Dr B was one of the world's best with ADR, and of course, Dr B trains the docs here in the US and has done more of them than any doctor in the world, and my humana references Dr B more than any other doctor in the references section under their clinical policy bulletins covering ADR. Gee, I wonder why? Maybe cause Humana has determined that he is one of the best and foremost experts in this area of study? The TX back institute that Mark lists here is one of the pioneer's in ADR technology and they have extremely high succes rates. I think mark is on the ball with his preferred surgeon list, but he doesnt shove it down anyone's throat. So why shouldnt he promote who he honestly thinks is the best? Mark has always preceded his opinions and recommendations with "Im not a doctor or a medical expert, but I think..." or he says " In my opinion, I think ...blah blah blah. " He has never PUSHED any opinion or pressured anything on me. Though, as some say, he doesnt think too highly of Stenum. LOL. Oh well. Hey, everyone has the right to their opinions and Mark has his, others have theirs.Who cares. Lets not ban anyone if at all possible. Banning is for when one member attacks and insults another.

Anyways, I can tell you that this forum had ZERO to do with me CHoosing Dr B. ADR support is where I did most of my research. What made me decide on Dr B was only 1 thing, and that was from reading tons of success stories by people at ADR support after using Dr B. I could have just as easily chosen Stenum but there were too many stories(true or not) floating around about some disasters (yes, every surgeon has a few), and really, I did not see many patients at ADR support who posted about success at stenum. But Dr B's name was attached to every single success story I found over there. I had already made up my mind about Dr B being the surgeon I wanted before ever talking to mark or coming to this site.Actually, I think I got along with mark so well cause he and I felt the same about Dr B. I had already decided on him before coming here.

I also never felt Mark gave me a "hard sell" for any of his services. In my book, he is a laid back guy. I feel he does what he does because its a passion he has to help others. That's my impression, others obviously have different opinions. One thing for sure, he has connections and can make things happen. This much I have benefited from, and he has alot of knowledge and experience and advice that is extremely insightful.

Now, on to the most recent development. You guys wont believe today's developmements! Around 1 pm I get a call from the Wisconsin doctor's people with an update about the cost of my surgery with Dr B and Dr Sullivan as assitant. I was told that the old quote was based on a simple revison of an ADR. The new quote is corrected to account for ADR removal and conversion to fusion. For some reason , the Wisconsin doctor was thinking I only needed to fix the ADR. So, the new quote is $45,000. I was to pay $6K, then 30%. But , since the 70% paid by insurance was reimbursed at medicare rates, I would end up paying alot more of that 70% also. I was probably looking at $25K out of pocket. I said "No thanks". Then 40 minutes later I get a call back again saying that Dr Sullivan has spoken to Sytheses since then and found out that Syntheses is paying for EVERYTHING!! They will pay my deductible, airfare, EVERYTHING. WOnt cost me a penny. Now, I have yet to get this in writing, so Im not holding my breath just yet, but this is what I was told. When I initially heard this, the popular phrase from the movie godfather came to mind, ....."We're going to make you an offer you cant refuse". LOL. FREE is indeed very hard to refuse. And Dr B is clearly one of the world's best and Dr Sullivan aint no slouch either, I checked him out. So, I think Ill be in good hands with 2 docs. Given how 40 minutes later my surgery suddenly became free, I figured there is a high probability that this ADR removal is a training case for Dr Sullivan, and maybe he doesnt want it to slip away. The way this came down certainly makes it look that way, and I know most surgeons have no or little experience under their belt at participating in a cervical, or lumbar ADR removal as there are so few candidates who need it done. I dont know if thats the case, and I really dont care if it is. Im just escatic that its Free!! As long as Dr B is captain of the ship, I dont mind if it is the case that Dr Sullivan is particpating in a observation or training sort of way. Im still getting a 2nd opinion from another local surgeon here in Dallas this Friday, and since DrRegan is out of town, Im going to fly out to Los Angeles to see Dr Delamarter this Wednesday to get his opinion also. I just want some peace of mind that removal of C6/7 to fusion is the consensus and that Dr B isnt just on a one track mind. I was assured by Dr Sullivan's people that Dr Sullivan will provide a unbias opinion seperate from Dr B as to what is needed. Dont get me wrong, its not that I dont trust Dr B, but even the best in the world can be wrong at times, in fact, no matter who you are and how expert a doctor is, no one is 100% perfect all the time in diagnosis and recommendation. If anything, I can provide these 2nd opinions , if they differ, to dr B and Sullivan so they can take them into account in their prognosis and reccomendation as to what all I might need done. I wish and hope that the 2nd opinions agree with Dr B and dont agree with Dr Migniucci here in dallas who says I need all 3 ADR's removed and a corpedectemy done, which is big time stuff. Dr Mignucci is so certain I need more than just a C6/7 revision, he said he would not do surgery with that being the only thing done. This strong opinion really spooked me hence my desire for 2nd opinions. Lastly, it concerns me a little that Dr B hasnt acknowledged that he top ADR C4/5 isnt moving at all. Dr Mackenzie and Dr Mignucci both said it seems stuck in one position. You can see in my x rays in al the different flex positions(me looking up and down) that the darn thing doesnt ever move. One side is open and the other side is always closed. Even Mark seemed to observe the same thing and didnt have much to say about it. Both docs have admitted that it is slanted but they didnt use the word subsided. Im not sure if they think that top disc was like that from day 1 after surgery or if they think my vertebrae there has a natural slant and Dr B just worked it in with my natural slant as it was. I think Dr B told me that that was the case when we met at the airport. But he seemed hesitant to admit it wasnt functioning /moving as they are supposed to. So, now I wonder, will that top disc just act as a fusion then? Ill see what the 2nd opinions say about that and discuss such concerns once again with Dr B and Dr SUllivan. Anyways, Dr B did the initial surgery, and from what I can see, every doctor respects him as one of the world's best. So, I am confident in having him and Dr Sullivan handle this. So, I am set for a surgery date in Lacrosse Wisconsin of 9/22.

[dshobbies]

Steve,

Well that's more like it, if indeed your surgery proves to be 'free'. The 22nd is less than 3 weeks away. I'm sorry that your one level revision might now include more but if it has to be done, then it has to be done. Whatever happens, I so wish you luck, an easy recovery and a pain free life.

Dale

[fuzzy]

I also wish you the best with whatever happens. Please continue to share your story.

[Kathy]

Steve, That's great news! Free is my favorite 4 letter word. Hopefully, your other opinions will agree with Dr. B and make your decision easier. However, I don't really know why they would leave a non-functioning disc in there. Maybe they can explain better to you the reasoning for that. Or, if you insisted that you wanted it out, maybe they would go ahead and do it during the surgery (thus killing 2 birds with one stone) and just include it in the 'freee'. It could also be something where it is a malfunction in the disc and they don't want to 'admit' it. Either way, just so happy you are closer to getting the surgery you need.

I haven't been on here in a long time and haven't had time to catch up on this full post, so forgive me if these are redunant questions. Are you in any pain, or still pain free? Was there a certain reason they wanted to just remove 1 disc? Just curious. Talk soon. Kathy

[steve55]

Well, the Nuerosurgeon I saw today (who has limited ADR experience but is well known and also listed in Dallas D magazine as one of the top neurosurgeons in Dallas) says that He Strongly disagrees with Dr Mignucci's opinion of removing all 3 ADR's and doing a corpedectemy. He said that doing that is a unecessary worse case reccomendation and 3 level fusions are rarely reccommended. He also disagrees with Dr Mignucci's belief that my vertebrae (between C5/6 & C6/7) is too thin to hold ADR's. He does say I have some degree of osteoarthritis but its not too bad and it should be fine to hold teh ADR's. He also said 7 months is still not long enough to say I wont improve by waiting, but also didnt disagree with getting that C6/7 fixed for now with surgery. He said just revise the obvious subsiding tilted C6/7 ADR or remove it and fuse. Regarding my concern with the frozen top ADR , he says even if the top ADR isnt functioining, its perfectly fine as it will act the same as a fusion would.

And to answer Kathy;s question, yes Im in pain, level 2 in the day, level 5 many evenings. Its a dull deep type pain in my C6/7 area, not to mention 40% numb fingers in my right hand and that creepy sensation I sometimes get that my hands and arms are trying to go numb on me also. But Im wayyyy better now than pre surgery.

[Bill1961]

Steve it's great to hear your getting so many opinions and you have a date coming up. How do you digest all these varying opinions and make the best decision for yourself? This would have me spinning. I guess you really won't know until you wake up after surgery.

Are you still getting opinions from Dr. Reagan and Delmarter?

It is nice to hear Dr. Bertagnoli, Dr. Sullivan and Synthes will be providing everything at no cost to you. My guess it's a good opportunity for all of them. Sullivan for training, Bertagnoli for doing the right thing, and Synthes for fixing defective ADR's (if that's the case).

I did read about one case with a woman who had a defective Pro Disc C similar to yours. She described it as if it had a hinge on one side and the other was stuck open. According to her post it came right out. She had the fusion and is doing great. I believe she was in New Mexico.

I hope everything works out for you and will continue to follow your "adventure".

[trkdoc714]

That's terrific news Steve! I hope the next few weeks speed by and you finally get the relief you deserve from this surgery.

Bob

[Maria]

Steve,
That sounds way too good to refuse ~ at least to me. And I'm a big surgery chicken post my 2nd discectomy (don't think even I'd refuse that kind of offere esp. with Dr. B working on things). So wishing you the best~ please continue to keep us posted as able. Maria

[steve55]

Saw Dr Delamarter yesterday. His first comment to me was "well, you certainly get around". LOL. I guess he said that because I have been to the very top doctors thus far (Dr Peloza, TBI, and of course Dr B, then Dr Mignucci whom he knows). As it turns out, he has agreed with Dr Bertagnoli that Dr Mignucci's reccomendation of removing the ADR's and doing a corpedectemy is extreme and completely unnecessary. Dr Delamarter said he is familar with this doctor (Dr Luis Mignucci), and said that this doctor has a bias against keeled ADR's and often recommends their removal to patients who have them. And of course, Dr Mignucci is associated with the Bryan disc and does not support the Prodisc design due to the keel.

Secondly, Dr Delamarter alleviated my concern from the two other doctor reports that seemed to state that the top c4/5 ADR might appear to have no movement. Dr Delamarter took a marker pen and ruler and measured out the distances between my vertebrae in the flexion extended positions and measured them with his ruler. Once he showed me this, it became abundantly clear to me that I do have some movement, though limited, at that location.Dr Delamarter said that the normal ADR movement range is 4-7 degrees, and I have about 2 degrees of movement. He said that my 2 degrees of movement is still significantly beneficial in preventing adjacent level stresses and degeneration. He stated that any movement at all is beneficial compared to no movement that one gets with a fusion. One thing I forgot to ask is why he thinks my top ADR is moving so little. Ill need to follow up with that question. Dr Mignucci stated in his report that he thought the reason was that the top ADR was too large for the space. But who can believe what he says after all this. Anyways, Im just so pleased to learn that it does have at least some movement.


He further stated that the apparent slant to my top c4/5 ADR appears due to my natural vertebral slant at that location and not due to any subsidence at that level. Of course this matches what Dr Beratagnoli told me at our meeting at DFW airport last June.

Overall he said my ADR's look good and that my current symptomology (numb forfinger and middle finger and deep dull pain around the c6/7 area) seems to match what one would expect due to a subsiding c6/7 disc. He does not believe any of my symptoms or discomfort are coming from c4/5 and c5/6 locations.

He is fully confident that fusing the c6/7 as planned will fully resolve my current discomfort and symptoms.

Lastly, he asked me how I ended up going to La Crosee, WI. I told him that was arranged through Dr B. I mentioned to him that Dr B's first choice was doing my surgery at the TX back Institute as Dr Ziglar and Dr Guyer had welcomed Dr B to do it there while they met in a conference in Vienna. But my guess is that after they got back and saw I had failed their Psyche tests, they withdrew their offer. Dr Delamarter just smiled and chuckled. It was quite clear he found that funny and bemusing. I went on to say that I guess that TBI has their studies supposedly showing that depressed patients dont have as good surgical outcomes, ....Dr Delamarter was just nodding his head side to side (in what appeared to me as disbelief or amazement) as I was talking about it. It was clear by his reaction he doesnt buy into TBI's psyche testing stuff and refusing to treat people who they think may be depressed.

Ill end in saying that I was extremely impressed with Dr Delamarter, WOW! He is so personable, and freindly and unlike some docs, is very patient in letting you ask all the questions you want. Maybe it was because he knows I came all the way from Dallas, TX , who knows. ANyways, he was the only one of the 3 docs I saw in Dallas recently who was able to show me (with a marker and ruler) exactly how much movement the top ADR was having. He made it so easy to see and understand! Why didnt the other 3 docs I saw do the same? It set me back $400 but it was so worth it to give me PEACE OF MIND in what I am moving forward with. I walked away from that meeting feeling AWESOME!! He has alot of experience, I even met 1 of his patients who was checking out at the same time I was and this guy had a 2 level ADR and 2 level fusion all at once!!

[dshobbies]

Steve,

How great for you that you're finally confident that you're making the right decision, especially given the conflicting reports you've had from I don't know how many doctors.

Okay, so listen up all you spineys - nodding of one's head refers to an up and down motion whereas shaking of one's head is side to side Isn't it great that we can take some of the stress off of Steve's neck?

Steve, have a great one! You choose.

Dale

[Maria]

Thanks for the update re your visit with Dr.Delamarter. It's good to hear he took the time to give you information that others didn't as well as reassure you and that you found him so personable (or that he was)

[steve55]

Met with Dr B and Dr Sullivan here in Wisconsin today. Apparently my disc subsided deeper into my vertebrea such that I may not have enough bone left to do a fusion with. I guess that when the disc sinks, it eats up the bone and it must just disentegrate? They may end up doing a corpectemy (removal of C5/6 & C6/7 ADR's and removal of the vertebrae). This is not quite as drastic as removing all 3 discs and two vertebraes as the dallas doctor suggested, but its still not good if that ends up being the case. Dr Sullivan said he would suggest doing the corpectemy but Dr B says that after reviewing all the films, he thinks I have just enough vertebrae left for him to be able to salvage this via fusion and save the C5/6 ADR. Dr B says that normally they dont take bone from the patient hip, they normally use donor bone. But in my case, I need the sturdiest tightest fusion possible since the vertebrae is already so compromised, so they will take bone from my hip instead. I told him I heard that the donor site pain can be worse than the fusion pain, but he says that's usally with lumbar cases due to taking much larger graphs. But with cervical, they dont need much and he will cut from the top center of the hip and not from the edges as most docs would do. This supposedly makes it much easier pain wise. He doesnt expect Ill have much of a problem with pain at the donor site (hip). I guess Ill see soon enough. Again, it may be they end up doing the corpectemy. It all depends on what they see once they have me open.

Im actually more worried about this surgery than I ever was about the 3 level ADR in germany. I have a feeling this one will really be a tough experience. Im hoping Im wrong, but Im really not looking forward to it at all. : ( Surgery is tommorrow at noon.

[Katie]

Oh Steve, what a turn of events. My prayers are with you. I don't know what else to say except good luck with it all. I have to look up all the terms to see exactly what they are doing with you as well.

Your very positive attitude has amazed me throughout all of this, and it will carry you far. I don't think I would ever have stayed as up beat as you have. You have my vote for most courageous man of the year

I just came across this now, and you will probably be being prepped for surgery as I type. I'll be checking back often to see how things are.

[dshobbies]

Steve,

Doubtful that you'll get this prior to surgery but I wish you every luck possible and hope your vertebrae is salvagable. I understand your nerves being shot and that this is a larger worry than the ADR surgery itself but you know it has to be done and is no longer a choice. In this way, it's easier.

The immediate post op pain may be severe but is also short lived. Stay on the pain pump as long as needed and you'll do fine. I look forward to your post op posts

Sending you good, good, GOOD vibes, Dale

[mmglobal]

I've been speaking to Steve for the past couple of days... he asked me to post a brief update, so here it is:

Surgery last Tuesday as planned. He got out of the hospital on Friday and is doing quite well. He's taking no pain meds and has very low pain levels. He hopes to go home on Tuesday.

Unfortunately, the findings were very unexpected. Dispite never (since the ADR surgery) presenting with any infection symptoms, labs, etc... and even his current labs being negative; it appears that the subsidence was related to infection in the bone. All 3 prostheses were removed and he has a 3 level ACDF with iliac crest autograft and anterior plate. Thankfully, they were able to get this done without removing any vertebral bodies as the Dallas surgeon had recommended.

Again... Steve is recovering nicely and I'm sure he'll be along for an update next week after he gets home and back online.

Mark

[sahuaro]

Thank you for the update, Mark. How wonderful that Steve is doing so well and I am wishing him a smooth and thorough recovery. Rather astounding findings re the infection.
Mark: you've seen many, many patients have many different procedures--have you ever encountered a bone infection before?

[New-disc]

Good news Steve!!

Keep us posted when you feel up to it.

[dshobbies]

I'm so relieved that not only is the surgery over but also that he's doing well. I've heard bone infections are very difficult to treat. I wonder if he'll need follow-up treatment or is the removal of the ADR all that was needed?

If you read this, good wishes to you Steve!

Dale

[mmglobal]

Sahuaro, having been involved in over 500 cases now, I've seen way too much of the "less than 1% chance" types of problems.

I've only seen one other case of osteomyelitis and it came associated with discitis... an infection of the disc following a minimally invasive procedure. That case followed a typical pattern that included obvious infection parameters and very extreme pain just a few weeks after surgery.

[Bill1961]

Steve, I'm glad to hear you are on the other side and hopefully well on your way to recovery and a pain free life.

Mark, you mention that you've seen to many "less than 1% problems". Regardless of surgeons, is your reference to ADR? Or surgeries in general?

I have read many posts from ADR surgeries and there are many success stories, there are also many less than optimal results. ADR surgeries can probably be measured in the hundreds to a few thousand. I have also read about poor fusion outcomes as well, not nearly as many as you would think, considering there are some 200,000 fusions a year.

I'm starting to believe that the FDA has a reason to slow roll things and insurance companies might have reason to require long term data.

Myself I have a fusion from 2002 and (2)ADR's from 2009. I can tell you that the fusion was a piece of cake. No problems and was back to full activity 6 weeks later. The ADR's where more of a challenge to recover from. Maybe it was surgical expertise or dum luck?

I appreciate your thoughts.

[mmglobal]

Bill, I put "less than 1%" in quotes and said "type of problems" to make it clear that I'm not quoting any statistic. It really is not aimed at ADR... I'm just trying to illustrate my point that the harsh realities of spine surgeries really exist. 80% chance of success is not a slam dunk... neither is 90% (and I don't believe that any spine surgery comes with 90% chance of success.)

When I went to arbitration for the car accident that wrecked my spine, I was put into a 2% category and the defense that it's not really possible to be one of the 2% was very effective. Many of the types of problems that are supposed be so rare that we don't take the risks seriously, don't seem all that rare.

I agree that ADR success may be overstated, while in some circles, fusion success is understated. I learned very early in the process not to trust the numbers and I still don't trust them. Anyone who has worked with me knows that I believe that spine surgery should be avoided if possible and that I am frequently trying to clarify the harsh realities. There is no magic bullet.

In your case, "surgical expertise or dumb luck" may not be an either/or question. It may be the case that your bounce back from fusion would have been equally quick or quicker with ADR and that your bounce back from ADR would have been even worse if you had fusion. It's not necessarily that surgical expertise or luck are involved... it may be that the situation was completely different and that an optimum recovery was not possible from your ADR surgery regardless of what was done. I'm not suggesting that I know the answer and I also understand that it may be the case that you are right.

Having said all that, I'll still chose motion over fusion (if I'm a good candidate for motion preservation.) I believe that some patients who really need fusion avoid it way too long because of the fear created in the patient community. Fusion does not guarantee adjacent segment disease, just as ADR does not guarantee against it.

I've seen many presentations on failed spine surgery and specifically failed ADR. There is a frequent belief that a large percentage of the failed ADR cases would have failed with fusion as well, because the problem lies elsewhere, not in the treated discs. I also believe that many of the failed fusion cases would also have failed with ADR for the same reasons.

Do I believe that the insurance companies are dragging their feet because they have our best interest at heart. Absolutely not! I still don't understand why some insurance company bureaucrat gets to override the FDA and your doctor and deny access to FDA approved technology.

[Bill1961]

Mark,

I agree with a lot of what you mention. Low risks are generally disregarded when we are looking for an answer to our pain.

ADR sounds very appealing and fusions sound like a "death" sentence. So people can convince themselves ADR is the only solution. That could actually cause the number of less than desirable outcomes to rise.

As for insurance companies I also agree that they are not looking out for our best interest. They only look out for their shareholders. Which I don't completely understand. When I researched cost of a fusion vs. ADR in the States, fusion was more expensive. All I can think of is that maybe there is a belief that people will bypass conservative care if ADR is available? Thus increase the number of surgeries. Can't really think of another reason.

[Katie]

After the new lab report I just received regarding allergy testing for metals, I was wondering if it's possible that Steve was severely reactive to the metals that were implanted? It may have presented as an allergy when they 'opened him up'.

I had blood testing done on the recommendation of a poster, because of my known allergy to nickel. It turns out that I am highly allergic to just about every metal used in ADR, including Cobalt, Chromium, Molybdenum, Iron and Aluminum, as well as a few others. I am 'off the charts' with Nickel. Titanium is the only one that isn't extremely reactive with me.

I'd be curious to know if Steve could be reacting as I would have been, if I had followed through with the intended surgery months ago.

[steve55]

Well, Im 8 days since surgery and its been quite an experience to say the least. I didnt get the worse case scenario (corpectemies) nor the best case scenario (being able to keep my other 2 ADR's). I got something in the middle, 3 level fusion. Well, you win some and you lose some, that's life. Regarding Katie's inquiry about metal allergy, well, my lab culture did show positive for Staphylococcus aureus so we know what it was now. The range of possibilities as to how this happened varies. Its possible I picked it up during surgery in germany, or perhaps post surgery it found its way through my scars. Ive been told that no matter how many times a operating room is scrubbed down, it is still possible to get one of these staff infections during surgery. I also have psoraisis which often causes breaks (sometimes blood breaks) in my skin, so its possible that I got infected through that mode. Perhaps I was already infected before surgery and the implants and surgery provided a home for the bugs to collect at. The thing in all this is that IF you get an infection at the artificial implant location, they are extremely hard to get rid of. Blood doesnt flow in all cornerrs and crevices of any artificial implant and also, I read that the bacteria can form some kind of shield around themself when they have a artifical surface to stick to such that they are protected/dormant until conditions around them are ripe for them to spread again. Ive since read that many people with artificial implants (hips/knees) have simply had to have those implants pulled out in order to rid of the infection. Hence, the risk with ADR's. If you get a staph/infection of certian kinds, the infection may make its home on your ADR's, and then you have to have them removed in order to fix it. WOW!

Anyways, Ive been able to have a much more positive attitude about all this after reading more deeply into multi level fusions. Studies seem to show that fusions yield the same % successful relief of pain outcomes that ADR does. The only real significant difference comes in regards to adjacent level degeneration and range of motion (ROM mainly becomes an issue at 3 levels or more) . By speaking with one of the the nerological nurses (who handles spine patients for years), and reading internet articles to match, Ive since learned that the issue of adjacent level degeneration on the C spine usually occurs at C4-7, less common at C3/4 and hardly ever at C2/3 and C1/2, and C7/T1. So, if you get only a 1 level fusion, you are at much greater odds of adjacent level degeneration in the future at levels C4-7. But, once you already have c4 thru 7 fused, its less likely to have adjacent level issues in the future because the only spots left are less likely to degenerate. Of course, this can depend on the the patient's indivivual situation. Obviously a patient with a already compromised c7/T1 for example, may have adjacent level issues later at that location. Well, Mark can correct me if this is wrong but this is what my research has beared out so far.

My fusion is much easier (so far) than I expected. Ive needed very few pain pills (mostly just to take the edge off). The multi level ADR was far more painful and difficult neck and back wise than the fusion has been. But the hip issue where they took the bone graft is what makes this fusion far more difficult. The skin of my left thigh is about 80% numb but Ive been told this should clear up within a few months as the nerve is just inflamed due to the hip swelling. I spoke to a girl at the hotel I stayed at who had hip surgery and she said the same exact thing happened to her and after 2 months it cleared up. So, that put me at ease. Dr B said he grafts bone more in the top center of the hip rather than the very top part of the hip as most US surgeons would do. He said this results in a less painful recovery. In fact, when I woke up from surgery and since then, I have never had any pain in the hip from just a laying down position with or without meds. Dr B even made it a point to put me at ease after surgery by asking if I had any pain there. He was right, laying down I did not have any pain at all. It only hurts when I walk on it, but not so bad actually.

Apparently, Dr B says I am one for the books. So, I guess I have some minor claim to fame. LOL. I know they did take pictures of it all for their case studies. I guess Im the first patient who had a staph infection and didnt even show any signs of it, not even blood work!!! Not a single Doctor even thought of the possibility of a infection causing disc subsidence. Not even the great Dr Delamarter. I guess thats part of the reason why Syntheses covered everything for me, they too wanted to see for themselves what the hell was going on in my case and they may have been worried about potential legal issues with the disc seeing they couldnt explain why I was subsiding. And by the way, my bone density tests (tested at wrist, ankle and hip) were all solid!! No probs there. Anyways, I got a glance of what I think was some of the syntheses suits. I saw Dr B greet them in the waiting area as I was leaving.

Im doing pretty good at 7 days out, only back pain I have is from surgery. Hip is a little sore to walk on. These are all good signs so far. Since they used my own bone for the fusion, I expect to fuse quite fast too. Though it is harder for fusion to occur on multi level cases, hence the reason they used my own bone which as much as I hated to do that, I agree with them on that decision.

[steve55]

Here is the link that talks about why implants have to be removed once infection occurs on them. It explains how the bugs can defend themselves on implants! Amazing stuff

Lysostaphin Disrupts Staphylococcus aureus and Staphylococcus epidermidis Biofilms on Artificial Surfaces -- Wu et al. 47 (11): 3407 -- Antimicrobial Agents and Chemotherapy

[dshobbies]

Hey Steve,

Good to hear from you. I'm so glad you're doing OK. With only a week or so post op, I suppose you don't yet know how limited your movements are or will be because the surgery itself prohibits too much movement. I do know some cervical fusion patients and have been told after awhile, they hardly notice it. I hope that's true for you.

I'm pretty sure most of your hip area will regain feeling. It just takes time.

So rest as you must, move as you can and please, keep us posted. Though not what you would chosen, you just had your 15 minutes of fame

Wishing you an easy recovery, Dale

[Katie]

Steve, I'm glad you got a solid answer about the cause of your issues. The not knowing would cause a lot of stress.

Could you direct me to the article about the greater risk of adjacent level degeneration in the C 4-7 levels, as that's the area that my surgeon will be working on when we get the allergy issue sorted out. Thanks.

From what I've read, the ActivL disc is better when the space is limited, when distraction pain is going to be an issue. There's no sense in inducing more pain if it isn't necessary. It seems that so much new information is springing up, that could change our choices so dramatically.

You didn't have any dental work done after surgery did you? My dentist said that I had to take antibiotics just before treatment to avoid the very thing you describe above. It is so scary that such simple things can cause so much misery.

I'm glad that you are healing well, and wish you the very best in the upcoming weeks. Thanks for keeping us posted.

[mmglobal]

Katie,

The issue with antibiotics and dental work is the big blast of bacteria from our mouth that gets into the bloodstream when we have dental work. I'm 7 years out from my lumbar ADR and still do the prophylactic antibiotics when I have me teeth cleaned. I'm not sure I understand everything I think I know about this because everyone's gums bleed when they floss, but we don't take antibiotics prior to flossing. I used to work in sterile manufacturing (bacterilogical culture media) and was trained to understand that dealing with contamination is a numbers game. It may be the case that the amount of bacteria introduced by flossing is small compared to real dental work.

I believe that what Steve is eluding to with the discussion of psoriasis is that the sores caused by it may provide the entry point for a large amount of bacteria. I wonder if it's possible that there could be a secondary staph infection along with the psoriasis that would make it even worse?

I'd also like to discuss the distraction pain question, but can't write more now and perhaps we should start another thread for that?

I hope to hear that Steve's good recovery continues! (I wish I felt that good now.)

All the best,

Mark

[steve55]

Thanks for the well wishes everyone.

Today has been better. Im able to sit at he computer for hours with no worsening of symptoms or neck pain. I did some walking and noticed I was able to walk with less of a limp. IN fact, it seems to me that I could already go back to work at 10 days post op if necessary. BUt no need to rush it even if I am feeling well enough to do so.

Katy, here is one link:
Cervical Herniated Disc Symptoms and Treatment Options

The nuerosurgical nurse said the C1/2 & C2/3 discs are constructed differently thus they rarely ever have issues. Ill see if I can google some articles on that as I didnt save them.

Here is another one that really specifically says that the thoracic and the upper two cervicals are very rare anbd unlikely disc herniation candidates. I felty so much better after learning of this. I hope Im done with these disc issues for life since I have taken care of the most common culprits.

Wapedia - Wiki: Spinal disc herniation

You can just google "cervical levels most likely to degenerate" and you can read these type articles.

[trkdoc714]

Steve,

I'm glad to hear you came through your revision with flying colors! I hope all remains well with your recovery. Just remember one thing........DON'T OVERDO IT!!!!!

Best wishes,

Bob