Brand new here looking for advice, please?

[wendriful]

Okay, thought I was gonna be heading out of the country for a two level ADR for L4, L5 & S1; got a call from one of the surgeons I sent info to in New York which said: "it is counterindicative (I am 100% sure) for you to have 2 levels of ADR because you have a posterior fracture in your lumbar spine" (I am not sure exactly where but I think it's L5); "therefore, you need 1 ADR and a fusion because your discs are destroyed at that level anyway".

Does this sound right to you? I have emailed the two other surgeon's offices (different countries) to get a response before I traipse off for surgery to another country for a procedure I could have had here in the U.S., with follow-up if needed (w/o an exorbitant amount of travel required), with insurance card taken upfront, instead of a line of credit taken on my home to pay for it with no guarantee of reimbursement. However, having listed all the negatives, I still would prefer 2-level, ADR surgery though so I can teach Zumba and be as active as I want to be.

[longroadahead]

If I was going to have a major surgery like that it would be closer to home.

From what I can gather a hybrid surgery (fusion at l5/s1 and ADR at L4/5) is more recommended to a 2 level ADR.

[Maria]

Hi and welcome,
I think that it really depends on what is going on with each individual's clinical picture as to what would be best for that person. If there is something that is truly contraindicative to the ADR implant at L5S1 yet fusion is still possible and recommended perhaps that would be the best option.

I'd want clarification of that like to have the films and to be able to get a 2nd/3rd surgical opinion from equally as reputable spine surgeons as the one you've consulted that work with both ADR and fusion.

At one time I was a candidate for 2 level ADR then several years later I wasn't (because of facet changes at L5S1) and was a candidate for ADR at L4 and fusion at L5S1. I didn't want the fusion period but probably would have gone ahead w/the surgery if I felt worse or no better than I had been feeling for quite a number of years. Now I've been told I'm not a candidate for ADR period however am not seeking surgery at this point.

Has your insurance already approved the hybrid surgery in the states?

Seems from what I've read and what I was told on my last surgical opinion which has been 5 or 6 years since that there's not that much mobility at L5S1 anyway so fusing that level shouldn't disturb the ability for movement there. Having the ADR at L4 might help to prevent adjacent level problems altho there seem to be a number of newer multi level fusion patients that are doing relatively well.

I think it's again what would work best for you esp.if there are any contraindications for ADR period. Hopefully you'll continue to find that out and make your surgical decision from that point. Good luck and keep us posted if you're so inclined.

[dshobbies]

Welcome to the forum,

If you're on the fence as to what to do or who's right - the best thing is to get more opinions.

Probably the easiest way to do this is to contact Mark Mintzer, the founder of this forum at GPN Artificial Disc Replacement ADR. Though his website, he can put your films and history online and have an internet consultation with the best doctors. There is a cost involved for this service but is probably the quickest way to get another opinion.

A word of caution - do not make a decision until you're sure of both which doctor you want and which procedure. You mostly have 1 chance to get this right and only you will reap the reward or suffer the consequences.

That being said, fusing S1/L5 isn't as bad as fusing L4/5, which we're assuming is the recommendation.

Good luck, Dale

[mmglobal]

a few weeks ago, I attended SAS11 in Las Vegas. The discussions of hybrid surgeries and the concept that "L5-S1 doesn't move much anyway, so it should be fused" were quite amusing. Rick Guyer of TBI presented data about movement of L5-S1 completely blowing away the concept of it not moving enough to justify ADR there. Other discussions about hybrid surgeries all came back to the same conclusion. REIMBURSEMENT ISSUES are the primary factor... remove consideration about payment for surgery and the frequency of hybrid ADR/fusion surgeries would be tiny compared to what it is today.

There may be true contraindications for ADR at the fractured level. Each case is unique and IMHO, a more serious case like this should be evaluated by someone with a great deal of experience with the more complex cases. "you are not a candicate" from someone without that great experience might be more accurately described by, "you are not a candicate for a surgeon at my experience level." (maybe you need to change experience level to 'risk tolerance', or 'at my hospital', or....)

Mark

[Hooch]

It is a contraindication. If it is a pars fracture etc. I would absolutely not have an adr in there, but you can surely find a surgeon who is willing. There are highly aggresive surgeons who push the boundaries.

The other factor that is 'pro' hybrid is not that l5s1 doesn't move (it sure as heck does), but the motion introduced by adr's is imperfect and a two level introduces more complex non-physiological torque. Though the clinical relevance of this is subject to debate.

Yes Mark is right the driving force is financial with US insurance reluctant to approve two level for whatever claptrap goes through their heads.

From the limited data available when I trudged through this nonsense outcomes were similar.

Concentrate on choosing the surgery most appropriately indicated for your condition.

Best of luck.

[Maria]

Hey Mark,
thanks for coming back and stating what was presented by Dr.Guyer as SAS11 re L5S1 not having much motion there anyway so go ahead and fuse. I won't repeat that again! I do remember Dr.D saying that to me during my surgical consultation w/him back in '05 and when asking Dr.R about fusion vs. adr at L5S1 he said "either or or" as I recall.

Any news re when the FDA might approve use of ADR at multiple levels? Any closer to this?

[wendriful]

Hi Maria: Thank you so much for taking the time for such a lengthy response. The only thing I can think of, to be honest, as to why 3 reputable surgeons missed this is because the REPORT of my recent discogram followed by a CT on 3/31/2011 had an ERROR. I called the radiology agency and got their "revised report" yesterday. They left out of their IMPRESSION: "There is a left-sided spondylolysis @ L5 with a grade I spondylolisthesis @ L5-S1."

I handwrote (on ones I sent in mail) and typed to all facilities I sent to electronically beforehand and when I sent all films that the current report was missing spondylolysis @L5 and I gave them a synopsis of what my diagnosis was based on other neurologists in the past. So either the senior surgeon or their staff did not look at all of my films? OR they only based their treatment plan on the radiology reports.

Either way, how can I feel secure in their decisions to treat me now, when one hasn't even responded back to my question about it being contraindicative, one responded back with dates I could get a one level plus fusion (hybrid) option w/o mentioning their error at all, and one had their rep call with no specific message, just to call back.

Is it normal to feel SO emotional? I am normally SUCH a happy person and usually very tough physically! (I have been through over 18 various surgeries/cancer, etc. stuff, but never back surgery though). I JUST want my life back and have been MASKING my pain by working out to extremes (to use endorphins to anesthesize pain) and using pain meds to carry on a normal life. It just hurts regardless of patch, oral pain meds, ice packs etc. and I can barely put on my shoes without tears. I believe you are right: 2 are bascially autofused, and I have been dealing with no mobility at that level any way, ONLY pain. It can't get worse by surgery, can it? I would think that a NEW disc with more space in my spine would logically take pressure off the nerves...but then why aren't the rates of people living a better life after hybrid surgery higher? I am SO unsure of what to do. Anyhow, thank YOU ALL for trying to help me sort this out. I hope to be of help to someone else some day.

[wendriful]

@ Longroad: Do you still recommend the following: "Call Texas Spine and Joint hospital. Ask for the Fibrin Sealant with Dr Pauza 903-525-3300. He will request discogram maybe a MRI and let you know if he can schedule you. Ask for Von she does all the scheduling for the Dr."

I picked this info up off a thread by you from 2010. I am seriously open to anything that can treat my pain without making me worse. Have you had any long term success with this? ~Thank you in advance for your response!

[Maria]

Does sorta seem like maybe opinions were given based on reports vs. films though then again did these surgeons put the films up in the room while you were with them and go over them with you? I always ask the consultations I go to do and they have so far. Even if getting opinions based on mail away with films/reports I believe the surgeons have addressed the films and my complaints as well as reports.

Re the emotional aspect of this .. back pain or spinal pain (any part of it) is just a big bummer period (my near 30 year experience w/it).

The autofusion of my L5S1 area actually seems to have alleviated a good deal of my pain and/or at least stabilized that area a bit so I've gotten some much needed relief compared to past years when I was seeking more surgery.

I'd contact Mark M. here at GPN Artificial Disc Replacement ADR
He's helped/assisted many of us with getting our information to cutting edge spine surgeons for opinions and just talking things out which in itself helped me a great deal.

Dealing with this spine stuff solo can make a person nutz and sometimes we just need someone else's perspective who knows enough to be helpful but isn't directly affected by our decisions (family/husband/wife). An unbiased opinion (altho Mark has had lumbar and cervical surgery and his wife has had lumbar surgery).

good luck. We know the emotional part. For me alot of that had to do with fear I'd always be as bad as I was or worse, not to mention the chronicity of the pain and all the limitations and inability to do near anything. Who wouldn't be depressed or emotional?

You're Ok..just reacting normally it sounds like to a not your normal spine/life. I do hope you'll find some answers and things will improve. I'd call Mark or contact him. I did, many of us here have.

[dshobbies]

Wendriful,

You are depressed and with good reason. You feel like you’re screaming for help in a forest and no doctor is around to hear you. You want your life back, a commonality of all back patients.

With life threatening diseases, you move forward in your treatment and are doing something, however unpleasant, to help yourself get well. It takes time – but you are constantly moving toward regaining your health. With back patients, most movements are small and many are unproductive. We give up hope and without hope, you have nothing. How can anyone help but feel depressed when all they have to look forward to is pain and no life? Please believe me when I say that most of us have been down that road. We know how you feel and why.

I am going to ask you once again to contact Mark. You might ask what can one person do? Let me give you a synopsis of what he did for me and again, many have a similar story.

I was like you – no life – I wasn’t even able to sit at the dinner table with my family. The only time I left my house was for doctor’s appointments and physical therapy. I missed weddings, bar mitzvahs, anniversary parties, etc. I chose no drugs because I like to write and I still had that one thing I was not willing to give up. Doctors offered little help. I discovered ADRs. Those wheels turned so slowly, it only added to my despair, though I still had my hope for that miracle. I found Mark in May, 2005. Within one weeks time, I had an appointment with a top surgeon. I was scheduled for surgery in July and then again in August. My insurance company pulled the plug and I gave up on appeals in September. This whole time I was in contact with Mark and finally asked him for a consult with Dr. Bertagnoli in Germany (I really didn’t want to leave this country), who agreed he could help with a 4 level hybrid, or possibly a 4 level ADR. I was scheduled for surgery in December, three months away. I called Mark. I couldn’t wait yet another 3 months. I had been traveling the ADR road for more than one year, not to mention the two prior years. Another three months seemed like an eternity. After a whirlwind of preparations, airline and hotel reservations, etc., I was in Germany three weeks later.

Please call him. You have nothing to lose. If he can’t help you, he can’t. If he can…

And then, please choose your doctor carefully. Yes, you can most definitely get worse. I don't want to scare you but not everyone achieves their miracle. Your best chances of success lie with your choices for surgeon and procedure. I do wish you every luck.

Dale

[wendriful]

Yes, I have contacted him a few times and he was VERY helpful. The problem really comes down to this: I know who the best surgeon is; it's just that A. I am not sold on the disc he uses. and B. He hasn't responded with the total amount I need upfront and C. Even when he does respond, I definitely don't have the other family member involved in this financial decision onboard with that choice because of the obvious reasons: upfront payment needed without guaranteed reimbursement AND because I'm having difficulty raising that much cash period. I think I have a pretty good chance of getting it reimbursed because it sounds like my surgery has been 'downgraded' to a hybrid/one level ADR w/fusion, but I haven't received ANY correspondence from the aforementioned surgeon's office regarding insurance codes, letters for preapproval/necessity to insurance company, etc. And, they have not responded to the fracture that they missed either, aka: contraindication to 2 level ADR. I AM so afraid of falling into the 25% rate of people that are worse off than before surgery that I am hearing about, but the pain is at a point now that I just don't care anymore, I just want to lie in the O.R. and have them cut the pain out! (Clearly, that's not good). If I choose Plan B, I don't know how to find enough patient's stories in U.S. who have used the NY surgeon, is that because of HIPPA laws? Am I the only person who's financial health issues have made their spouse nauseated? (I am being facetious to a point, but do feel like a very large dollar sign these days). Maybe I should have a lemonade stand? ha ha

[Maria]

Wendriful,
I think this has been the reason many of us have foregone surgery maybe where we wanted to have it and utilized insurance paying for authorized procedures that were covered even if not our first choice. In my case I didn't do either in terms of 3rd surgery recommended. Guess I would have if I had to or would have to.

The 3rd surgery I was designated to have w/surgeon here in LA county had an office that was so difficult to reach and even was the cause of my 3rd surgery being un authorized because the surgeon/staff didn't fill out necessary paperwork in a timely manner as required by WC. I then had to try for 2 more years to get the surgery re authorized and when I did it was for a hybrid surgery vs. 2 level ADR. I definately didn't want the same surgeon who didn't get the paperwork done to perform the surgery even though I'm sure he was more than capable and I also didn't like how the office didn't respond to phone calls so in the end it did add to putting me off from going ahead w/surgery utilizing the surgeon/his practice as I thought if that was how I was treated prior to surgery how would I be treated afterwards?

That being said there are many persons that have come and gone on this forum who have had EXCELLENT results utilizing that surgeon/surgical practice and waded thru the office BS. I know I should not have let that influence my decision as one is looking at the skill/experience of the surgeon mostly.

Good luck w/your endeavor and however you have to proceed. Finances definately play a big part for most people. It is a big chunk of change to put out and while it's best to try to get it right w/best shot sometimes we have to make do with what is most feasible for us overall (thus possibly complicating the decision).

[dshobbies]

I'm sorry, I didn't mean to push so hard. You do not walk alone. It once took 6 months to receive a return phone call from a doctor and by then, I was so frustrated, I moved on.

Most of us who own homes in high priced areas like L.A., S.F., N.Y., etc. were able to tap into our homes equity - but those in areas like my nephew - my surgery was the same price as his whole house. Even then, we have to pay it back but can do so over a long period of time. There are also medical loans which carry high interest rates. From what I've read, those with limited financial circumstances don't have options other than fusion and even then, it's still up to the discretion of the insurance co.

It's sad but that's the way it is. I still wish you the best and hope it comes sooner rather than later.

Dale

[jsewell]

Wendriful

i so understand the spouse getting nauseated with the thought of the money involved. I never can even consider going out of the country. I have found that i have an awesome surgeon here near my home in Ca. He did send me out to DrRegan when he thought DrRegan was the better man for performing the surgery. DrRegan did take care of the pain in part of my thoracic spine but i have to now live with a devistating accident during surgery which has left me with only 45% lung capacity.
My spouse can't even handle the copayments on a PPO plan with a surgeon, that just accepts what the plan pays even though he is not a provider on the plan. He has my best interests at heart and has treated me well.

I do understand what you are feeling as when my insurance co, denied 3 times my most recent surgery to correct severe kyphosis and a broken neck!! THe thought of having to pay myself was very scary as we are in LA and do not even own a house! I had to go to my parents and them turning in some of their retirement income . Not a good choice.

Good Luck with this difficult decision. Unfortunately money does play an important part in it all.
judy

[wendriful]

Did I just read that correctly? Dr. Regan did a surgery on you and you woke up and couldn't breathe? (45% lung capacity) Are you on oxygen? Wow, my head is swimming over your prognosis. I am sorry to even mention my 'very' small issue after reading your post.

Well, it looks like I will be staying in the U.S. for surgery. I can get a line of credit out of our house but just think it would not be wise to pay upfront. If there is a complication and insurance does not pay (I have a friend this happened to for another surgery and she was in Mayo for 14 months, do the math on that). And I just had BCBS rescind payment for a different issue all together for my son which means I am paying the other $9,000 owed to them this week. go me. ha ha.

Thanks so much for ALL of your support. SO nice to be amongst people who get the whole "I have fallen but I can't get up" crowd. lol. Hey, humor has taken me many places in life. I believe I will be getting my hybrid (1 level fusion @ S1/L5 plus ADR at L4/L5 in New York City. If ya'll don't mind, I will hang out on this forum to get me through this process; and then, maybe I can be of help to others.

Funny, I thought my DH (darling husband) was gonna pass out when Mark called from Germany yesterday on my cell phone. He said that is $10 minute! I said he used skype...not sure if that matters, but he told me it was only 4 cents a minute...Thanks for all of you who get the whole: "I feel like a very large Greenback" concept. My best to all of you and no hard feelings to anyone; I don't feel like anyone came down hard on me at all.

[jsewell]

Wendriful
No issue is small, if you have not experienced something bigger , it is all big!! Yes i actually was put on a respirator for a while and in intensive care.
the really bad part was that DrRegan ignored the whole situation, never came to see me or even called my husband after the long surgery. He called my cell at the time i was on a respirator (wrong cell) and said everything was ok. My husband got any info from a volunteer in the waiting room. Once they got me stable (after many hours) he was only allowed to see me for 10 minutes.

The low lung function sucks as i am an avid exercisor.
Good Luck to you wherever you go for your surgery.
judy

[dshobbies]

Wendriful,

Agree with Judy, no issue is too small. I'm amazed at the small issues accumulating in my mind and find solace that others experience the same thing.

On BCBS rescinding payment - I know of another. He got a lawyer. Decisions were based on payment - BCBS backed down. They're counting on you doing nothing. He won very quickly. Can't afford an attorney - can you afford the 9k?

Dale

[wendriful]

Maybe I should just start a new thread? MY head is swimming with information, just when I think I get it; and I research discs til I am blue in the face ...I am told by the world's leading surgeon something I don't understand at all. Maybe it's the language barrier. I should just write them back and ask for clarification, but don't feel that would be right since I told them before they responded that I was not going to use their facility, and I just don't want to tie up their time.

I think I am reading his message to say, we have relooked at your case, and it's way too risky to do anterior procedure unless you have a VERY, VERY skilled surgeon, so second best choice would be to get a dorsal fusion only, ie. PLIF or TLIF only. Maybe I will just write back and see if they meant 2 fusions or a fusion and an ADR.

My abdomen is full of fun titanium and mesching, etc. so it would be like a minefield; but everyone originally told me that I was a candidate for 2 ADR. Until the doc from New York said: I am 100% positive that can't happen...then they changed it to: you can get a one level ADR and a fusion. Today I went to our local neuro/ortho surgeon and he doesn't do ADR's but offered me an ALIF with cadaver disc and then will flip me over for some percutaneous pedicle screws, etc. in my back to finish minimally invasively. I now have to do 3 more weeks of studying all of those initials I guess. (I get the jest of them, just am SO unsure of who, what, when, where and how for ME.) And I know that noone can decide but me...

On the ventilator dialogue, that must have been a horrifying ordeal for you and your husband and then to not feel cared for after, must have felt like betrayal! I think I could use a breathing apparatus right about now; oh wait, I think a brown bag will do. On the law suit, it's been 16 mos. and DH's company attorney's have already decided that I would lose apparently (at least if suit was filed against provider; they were deceptive to me and didn't tell me BCBS called them and said they wouldn't pay for his stay, and then proceeded to bill us (unknowingly) for residential treatment while telling me it was inpatient! And because I signed something when I checked him in, it makes it impossible for me to win (apparently) Course, DH never signed anything!...whatever...It will AT least be a tax write off! I need air...

[Maria]

Ask for further clarification. The worse that can happen is that you don't get it and the best is that you do to get it so that you fully understand what was meant by the reply. You've got nothing to lose. If the implant to be used w/ADR has to have anterior placement then I guess it's being suggested that if you cannot go to someone that is as highly skilled as this surgeon you would have either a posterior or transforaminal approach to your surgery and this might limit what type of hardware/implant device is utilized.

[dshobbies]

W,

You're overwhelmed. Though understandable it's difficult to think clearly when you have so much to think about.

First and foremost, you must understand what you are being told and why. You are paying for these opinions and have the right to ask for clarification.

You need to pick one thing and get it done before moving onto the next. So yes, write back, tell him you aren't sure what he is telling you and keep at it until you understand completely. You head won't be swimming if you stay focused on one thing.

We've all been overwhelmed with so many things at one time or another and always discover the same thing. You can only do one thing at a time. Make a list of what you need to get done and check them off, one by one.

D