DIAM vs ADR

[Katie]

A second doctor has recommended DIAM spacers instead of ADR in my lumbar area, because of a difference of opinion regarding arthritis in my facet joints. One thinks it is pretty minor, and the other says it is too bad for ADR and will cause more pain.

I've talked to the manufacturer, and they said that the spacers do provide a fair bit of motion, almost as much as the artificial disc, and certainly much more than fusion.

I'm torn as to which way to go. Opinions?

[steve55]

Diam Spacers as an option over fusion and ADR??? WOW. Ive never heard of this before. Im sure Mark (MMglobal) will know though.

[Katie]

I don't think they (DIAM spacers) are approved in the US, but are in Canada, at least for trials, so I don't know if Mark knows much about them (but I'd love to learn more if I'm wrong!). The manufacturer said they were being used here, but I didn't ask specific enough questions.

The spacers are not as invasive. They are less expensive. They are easy to take out if necessary (but I don't know what they would use as a replacement).

The pro DIAM doctor said the ADs would cause more pain if we used them because of the arthritis. The other doc said that the arthritis was not bad at all, not a problem for the artificial discs.

I don't know who to believe. I'm ready to book a trip, as I think I have sorted out the financing. HELP!

[mmglobal]

Diam was one of a huge crop of interspineous devices that came out several years ago. Wallis, X-Stop, Diam, Coflex, ISS, Wellex, Dynafix, Spineos, BacJac, In-Space, Superion and I'm sure there are others that don't come to mind right now. Diam was somewhat different because it is a soft silicone spacer that is designed to support the posterior elements.

When I first saw Wallis, I think back in 2004, I thought that it would keep most of us from having ADR. If you could do a discectomy and somehow jack up the disc space, offload the posterior annulus (where so much of our low back pain is generated), and stabilize the system with a minimally invasive surgery, what could be better?

5 years later, I'm still waiting for the flood of data and the rush to do this. I've observed Wallis and Coflex procedures. It does seem to be relatively small compared to ADR, but the philosophy is completely different. These devices are designed to take away motion, whereas ADR is designed to restore motion. With these devices, you will not address discogenic pain. Originally the theory was that offloading the posterior annulus would relieve the stresses that were painful, but I think that pans out in only a small percentage of the cases. If you leave all the painful tissues and put a rock between the very back of the system, I think the disc may still continue to collapse (now with a kyphotic alignment). With sagittal balance off and motion severely limited, what does that do to the adjacent levels?

Also, I don't believe that these devices are appropriate for L5-S1 and that is almost 1/2 of lumbar disc disease.

Having said that, I believe that X-Stop and other devices have been very effective at dealing with typical old person's stenosis. The folks who get leg pain when they stand up, and have to walk leaning forward seem to get great relief from the interspineous devices. It basically forces just the level with the stenosis into flexion and offloads the structures that cause more buckling of the ligamentum flavum that lights them up when they stand or go into extension.

It's all about indications. They are different for ADR, dynamic stabilization, interspineous devices, etc... The proponents of the devices tend to over use them across too many indications.

I have to go now... This is all off the top of my head... I'll look some things up and post later.

Mark

[Katie]

Mark, thank you very much for your input. I asked why the opposite edge of the disc didn't get 'squished' when the back part was lifted, and didn't get a good answer, just was told that the disc itself maintained the space.

They do remove the herniated part of the discs, where they are pushing on the ligamentum flavum. They did say that because it is made of soft silicone, that it offers more range of motion than the other brands. It looked pretty simple and effective to me too, but I haven't heard enough about them to form an educated opinion. I really need help.

Most people who have had ADR have some arthritis, correct? Even when it isn't indicated for surgery by the manufacturer, they have been mostly successful, from patients I have talked to.

They want to put the DIAM spacers in L3-L5/S1, but will put an artificial disc in the C5/6 level. They claim a 97% success rate.

[mmglobal]

I don't believe that there is any spine surgery that even approaches 97%. I discussed the interspineous devices with a leading surgeon yesterday and asked, "Why have these devices not lived up to the promise we saw in them 5 years ago?" My layperson's understanding of what was said is that the interspineous devices are great for stenosis in old people who's spines are largely immobilized anyway. Most of the interspineous devices really limit motion are are often like fusion devices. The way they force the segments into kyphosis (forward tilt) reduces your lordosis and can generate flat back syndrome. Flat back can really cause problems. They used to fuse in that position, but abandoned that because of the problems caused by loss of spinal balance when you reconfigure it so substantially.

Mark

[Katie]

Mark, thank you for taking the time to check that for me.

You said 'most of the interspineous devices really limit motion'. Could it be that this particular one might not be as bad? This news is very disheartening for me.

A few days ago, I found out that my locked in pension funds could be released for urgent medical reasons (this is in Canada...pension funds are regulated by the Government). I thought that I could now afford to go to Germany and have the surgery I first hoped for. I would have had more than enough.

Well, after getting the information re: balance of my funds from the pension people yesterday, I found out I was a victim of the economy too...I am now over twenty thousand short of what I need for surgery there.

However, the other surgery elsewhere that involved the DIAM is still well within my means. Your information is a kick in the gut

When you asked about this, did you mention that most of my natural disc in each level would be left intact, that only the herniated portion at the back would be removed? The surgeon said that this would prevent the tilting forward that you described, because that's what I thought might happen as well.

If nothing else, this might help some other Canadians who now might be able to get their funds from their pension plans, when they thought they were not able to touch them. New legislation was put forth last July that allowed this loophole. My only hope is that waiting a few months may allow the funds to recover. They already have come up almost 14% in the past week....fingers crossed.

I think I'll open a new thread to let Canadians know about this new legislation. Thanks again.

[mmglobal]

Katie, I have to caution you about putting too much stock in what you read on the internet... including what I write. There should be no decisions based on what you find here. Use the info here to help develop questions and improve the dialog with your doc.

Also keep in mind that my experience with the interspineous devices is quite limited. I do have a couple of older clients with successful treatment with xstop and coflex and a few with coflex as stabilization behind ADR. However, I've not been associated with a young person who has in interspineous device implanted to deal with discogenic pain, leg pain, DDD.

Your post mentions L3-S1 implantation. 3 levels? How many 3 level procedures has your surgeon done with Diam? How many L5-S1's? Clinical trial guidelines did not allow L5-S1 or multi-level procedures.

I believe that one of the things that makes these devices acceptable in older patients is that they have already lost so much disc height so further collapse is not expected. Your doctor said that your intact discs will keep the configuration from collapsing into kyphosis. Ask him if he expects your disc degeneration to stop or will it continue? What will happen to the configuration as the discs continue to lose water and break down?

Again, my experience is very limited... take everything I say with a grain of salt. This is just fodder for the dialog, not a warning against or an endorsement for any procedure or devide. I'm a computer geek... not a doctor.

Please keep us posted as you go through the dialog.

All the best,

Mark

[Katie]

Thanks for the reminder. My concern was that you have provided the only other information so far on DIAM other than the manufacturer and surgeon. I've read and talked to quite a few actual patients of ADR, but none with the spacer, so I am obviously trying hard to get some information about them.

Since you have actually spoken to a surgeon with experience, I need to take this with just a bit more than a grain of salt. I realize it is only one voice, but it is a more neutral one than I have had.

I'm not sure if I fit into your catagory of 'older patient' . I'm in my mid 50s...how diplomatic can you be ? The surgeon has done about 150 of these DIAM surgeries, but I will have to ask how many levels he has done, of each one. Thanks for that question, as well as the other one about continued degeneration. I hadn't thought of those. Ya done good

The other surgeon I mentioned only thought I needed two ADRs in the lumbar and two in the neck, and this fellow wants three DIAM in the lumbar and one in the neck. I wish they were all on the same page; it would make the decisions so much easier.

I don't know if it matters, but I don't have any leg pain, just all in the lumbar area.

[Liz]

hi katie,

i don't know your full story, but my understanding is interspinous process spacers like the DIAM are designed primarily for patients with spinal stenosis (ie LEG pain/numbness); i think in theory they may also unload a degenerating disc but if i did not have leg issues i would be cautious about putting in 3 DIAMs. some surgeons will not even operate on patients without leg pain (or deformity). back pain is much harder to diagnose and it's not emergent the way leg pain/numbness can be in terms of permanent nerve damage. i don't think it's any less disabling though, as i suffered w/disc pain (w/leg issues) for yrs and now have facet joint pain.

anyway, if you don't have any leg issues now, please be aware that a 3 level lumbar procedure could result in nerve damage and you may end up with leg issues.... this is not meant to scare you, just reality.

150 procedures is a lot for the DIAM i think... your surgeon is experienced. perhaps you could ask to talk w/a few of his patients w/"similar" pain as yours pre-op (ie only back pain) and see how they are doing. Is your main pain coming from your discs or facet joints?

i would try and get a 3rd opinion since your two opinions are so varied. does the surgeon recommending DIAM perform ADR? perhaps you could have a combo of DIAM and ADR or fusion? ADR is anterior (now) and DIAM is posterior so you could get one or the other on one level first and the other op later. so many new minimally invasive therapies are in the works for disc pain. i would also consider fusion depending on the condition of your facet joints.

you're definitely not old, so i would also ask how "active" you could be with 3 DIAMs without risking device failure. i think they are deigned for older patients that want to walk, golf, other mellow sports, but no skiing!

hang in there and best of luck to you,
Liz

[Katie]

Hi Liz,

Thanks for all that feedback. I'll try and fill in some gaps. I do have severe stenosis as well as herniation, spurs, etc., especially in the cervical area, although almost all of my pain is in the lumbar. I have had serious pain in my left leg and foot before, a few dozen times, but managed to get rid of it with conservative treatment.

Last summer I went numb from the lower waist down for quite awhile, sort of like coming out of the freezing you get at the dentist. Bladder & bowel problems, numbness on the left side when walking, etc. What would cause the nerve damage with the 3 level DIAM?

Unfortunately I haven't had a discogram or any other thing to tell me if it's my discs or facets that are giving me the most grief. Getting treatment here is almost impossible.

Yes the same doctor that is doing the DIAM wants to put a Medtronic disc in my neck, but refuses to put them in my lumbar. He thinks it will make the pain worse. That I can't imagine!

I am working on a third opinion in another province, but it will probably be a few months unfortunately, and I don't know if I (and my husband) can last that long. This has been going on for four years now, for the extreme pain, and over ten years from when I first had symptoms.

One of my thoughts would be to have the DIAMs and cervical ADR done, and if things failed in five or ten years, then at least the spacers are easy to remove and there should be lots of progress on other methods by then. Is that being too practical?

Thanks for that vote of youth No, I definitely am not a walking, golfing sort of girl, more a competitive carriage racing with my horses kind of person I've always had a farm, and don't shirk hard work, although I know to take it easy now when my body gives strong clues

PS: Do many people post images here, or does it take up too much room? Would that help explain things?

[Kathy]

Katie,
This is my first time reading this post, wish I would have read it sooner. My cousin had a similar surgery, not sure if it was the DIAM; but same concept. He was 24 at the time and has been pain free ever since! I would definitely get a 3rd opinion. I know months is a long time to wait; but you don't want to regret your decision for years. I would also check into clinical trials, check the US. I know you don't hear alot about the care here; but there is great advances being made here too.
I agree with you about doing the more conservative treatment, then if need be, go back and do the other one.
On the arthritis, my MRI said it was 'severe' but all 3 surgeons I saw did not agree with that. I think that it is a difference of opinion and you must get more opinions.
Best Wishes,
Kathy

[Katie]

Kathy, thanks so much for adding to this. How long has your cousin had the spacer? There are quite a few varieties of them, but the DIAM is the only one that is completely made of silicone, and thus no metal to stiffen the joint. Or at least that is the concept.

My husband and I are waffling. If we go to Germany, we will wipe out ALL of our funds, because of the cost of four levels. If I go to the other surgeon, it is 1/4 the cost of the other surgery. That is a LOT of money to sink into one, with nothing left in the basket for a backup plan.

The other positive note to the DIAM spacer is that the surgeon trained both in Germany and in Toronto among other places. I am only five hours from Toronto, and the surgeon has colleagues who can work with me after I come home, apparently. Unfortunately, it will be about a year's wait to see them ahead of time, to get their opinion. I have emailed them, with no response, but that does not surprise me. Almost all doctors I have met here are that way.

The exciting news is that my alternate doctor that I wanted for an opinion emailed me late last night and asked me to call him on Thursday morning for an appointment date!!!! This may help make the decision a lot easier. If he 'sees' a lot of arthritis, then perhaps the DIAM is the better choice. Or not.....it was so much easier when I thought I only had one option.

[Katie]

Kathy, where would I go to look for the clinical trials in the States? If they were not trials, then I think the cost of any surgery down there would be prohibitive for us.

[Katie]

I questioned the DIAM doctor again about why he thinks this device is better than the ADR for me specifically. Here is his reply. I am glad that he is direct, and obviously passionate. Any comments?

I can understand your concerns.

Let me tell you that I am a thinking doctor and my only mandate is to provide relief to my patients and excellence in work.

Let me put in capital letters - ARTIFICIAL LUMBAR DISC REPLACEMENT WILL BE A DISASTER IN YOUR CASE in the lumbar region. You are not a candidate for the same. Your problem is not the discs but the stenosis of the canal as a result of ligamentum flavum hypertrophy and facet joint osteoarthritis. Such a situation will not only rule out the possibility of disc replacement but also might make your condition your symptoms.

[Kathy]

Katie,
I can't say for sure; but think my cousin has had his for 2 years. I am not very close to him, so I have talked to him in months. I didn't even know he had previous back problems, until about 6 months ago. At that time, I believe he had had the surgery about 18 months prior. He said he was completely pain free. His surgeon was at Texas Back Instititute in Plano, TX.

Do you want the good news or bad news first? Let's go good news.... The good news is: You have choices!
The bad news is: You have choices!

What your surgeon said, sounds reasonable to me. I am no way a dr, not even remotely educated, so take that with a grain of salt.

Best Wishes,
Kathy

PS. Did you get an appointment?

[Terry Allen Blackburn]

WOW Katie:

Such a diverse range of answers. You might want to consult with Dr. Bertagnoli and see what he has to say. I hate to throw another spinal surgeon in to the mix but you have two widely differing opinions that it may be time for a third opinion. No matter what you choose we will support you in the process. Ultimately you will have to make the decision in what you think is best for you.

Terry Newton

[Katie]

Thanks guys. At least I don't feel quite so alone in this decision now. None of my friends are of any help of course, even my veterinarian She said either I would have been fixed by now if owners had a lot of money, or put down....sometimes the second doesn't sound so bad...we treat our animals better at times.

On a positive note, I've found some surgeons in the States who are willing to look at my images. I sent my MRIs to them, and are waiting for some feedback. More to the mix....and the other surgeon in the next province over is trying to fit me in over the next three months. Not quite as fast as I would have liked, but I told him I could come on a cancellation spot. He actually thought that the DIAMs might be indicated too, but will evaluate more. He also said that three DIAMs was bad, as it led to kyphosis. Oh Goodie.....

Also, a date has been set for my Appeal with the Government Insurance, April 30, just 27 more days! But I just learned that if I win this, I would only be approved for Stenum, not for the DIAM, as I did not apply for that, just ADR. What a circus. I could have to start this all over again if I am meant to get the spacers instead.

Kathy, thanks so much for the information about your relative. I'll chat more tomorrow.

The good news is the Appeal Board agent said that my submission was as thorough as any lawyer's, and has a better than 0% chance at winning Actually she said that presentations this thorough often have favourable results, but I'm not holding my breath.

Is it permissible to post one of my MRIs? Or should I just send it privately to the lucky few who have given me permission? I appreciate any and all feedback as I can't get any more confused than I already am!

Dr. B. is starting to sound like a good option for advice.....thanks for that.

[mmglobal]

I'm glad I took the time to read the whole thread, because first I was going to respond to this...

Originally Posted by Katie

Yes the same doctor that is doing the DIAM wants to put a Medtronic disc in my neck, but refuses to put them in my lumbar. He thinks it will make the pain worse. That I can't imagine!

with... If the disc is causing your pain (and there are no other pain generators), if they put an ADR in properly and don't cause any new problems, your pain goes away. (Obviously, it's not that simple, but that is the situation for many of the people who have the remarkable recoveries.) If you have a lot of pain generators, the situation is very complex and there can be a huge difference from one treatment to the next.

I'm glad I read this:

Originally Posted by Katie

Your problem is not the discs but the stenosis of the canal as a result of ligamentum flavum hypertrophy and facet joint osteoarthritis. Such a situation will not only rule out the possibility of disc replacement...

This makes a lot of sense. If the problem is not in the disc, ADR may not be best. Some time, many different treatments may be successful. If the problem is the disc, an interspineous spacer will leave the painful tissues, but offloading the posterior annulus may still resolve the pain. If the problem is hypertrophic ligamentum flavum, ADR may restore the disc space and retension the ligamentum flavum, resolving a buckling or bulging from the collapsed space, resolving the stenosis and pain. That is why there is often a crossover in indications... one doc wants to do a spacer, another wants to do ADR. The key is to do enough homework so that you are comfortable with your decision.

Being evaluated by a surgeon who does a lot of ADRs and no DIAMs will likely yield a different opinion than one from a surgeon who does a lot of DIAMs and no ADRs. They may both have motivations and opinions that are colored by issues not relevant to your case and they both may just be wrong about certain types of cases. But, again... do enought homework so that YOU are comfortable with your decision.

All the best,

Mark

[Katie]

Hi Mark and all,

Thanks for this. You probably don't know all the facts, as they are scattered and buried in several posts. The kicker here is that the doctor advocating DIAM does both them and ADR. As does the Canadian doctor who lives in the next province over, just four hours away.

My issue with him is that he only does lumbar, not cervical, and that means I'll need another surgery with someone else anyway, and I am being told that the cervical is urgent, that any small accident can cause quadriplegia. Oddly enough, I have almost no pain in that area, just occasionally when I look up or am typing too much, like yesterday

The odd thing is when the neck pain does flare up, the pain medication that does work for my back doesn't touch the cervical pain.

I believe that Stenum can probably put in the DIAM as well, and have written to ask that, and have also sent over the other doctor's concerns. I just hope I haven't burned my bridges by doing that.

I will consider the suggestion about Dr. B. We aren't exactly overflowing with money right now, but who is, so that is my main issue. If we are going to go anywhere, every penny counts, but it has to be the right trip though. So, do you think he would take a nice painting instead? I'm an artist in real life

So is it OK to post the image here or am I breaking protocol? The problem with being a newbie...don't know all the rules yet

[Kathy]

Katie,
You can post your images here. There is an option on your user cp, to have a photo album, where you can have images, photos, whatever, for other users to see. You can also post the image on the thread.

It sounds like you are doing all the 'correct' stuff. That is great that both surgeons do ADR and DIAM, that should help you get a more un-biased opinion. Although, since they had differing opinions, that isn't a great helper. From what I have heard, Dr. B is a great resource for a 3rd opinion. I have no idea if they just do ADR; as I don't think I have heard of anyone having anything besides ADR (I'm sure Terry and Bob can clue you in more, as I don't know). Everything Mark said is over my head! I do understand that ADR won't help you if you aren't having disc pain or more than one pain source. I thought of something important on the facet arthritis too. I was told, by all the surgeons I cosulted, that since I had had facet injections and did not get any relief from them, that my facets shouldn't be an issue. Basically, that the injections can be a 'diagnostic' tool, like a discogram. I would also have a discogram, if I were you, prior to any surgery. That way you know if you are having disc pain, or not. As long as you do your homework and make an informed decision, you will be happy with your choice... no regrets.

A 0% chance, you say? LMAO At least you put in a great appeal, hopefully they will approve you. I did the same thing when I appealed my insurance; but think I had a negative chance. I have never heard of a single person getting the same insurance that I have to pay. At least you are fortunate enough to have the option to go elsewhere. I know that it's a lot of money, that you don't want to spend (who does?) But it's there as a back up plan. Oh, and here is the clinical trial link: Home - ClinicalTrials.gov Pick, search for clinical trials, then enter keywords, such as DIAM or ADR. I have found that if you put in more than a word or two, it yields no results. I think it didn't even bring much back for ADR, so I put in spine. Or lumbar, cervical, thoracic. Then you have to go through all the results, the key is to look at the treatment. It will either say, medication, surgery, procedure, etc. That helped me to scan through quicker, as I only read the surgery ones. You can then click on ones that sound interesting, find out the objective, what the control is (what they are comparing the 'experimental device' to), the inclusion and exclusion criteria, where the trial is being done (this is usually multiple locations across the US; but sometime in the early stages of a trial or for whatever reason, the trial may not even be in the US. I have seen trials in France and Germany, that were FDA trials. Not sure why this is?)

You are doing a great job of researching and it is going to pay off for you! You are well on your way to surgery and pain free days! Give yourself a pat on the back (or if pain makes that impossible, make your husband give you one ).
Best Wishes,
Kathy

[Katie]

Thanks Kathy,

I have to be honest, the trials scare me! If these are experiments, then the chance of something going wrong is much greater, no? One of my dear friends is in a drug trial for a lung disease that is slowly but surely taking her life. But that is the only option she has except for a transplant, and she will go on that list when she gets bad enough.

I have an appointment with Dr. Fabien Bitan in NYC for early next week. He has my MRI and says, like the DIAM doctor, that my cervical 5/6 level is an emergency, is very urgent. My lumbar is JUST giving me pain, but not that important but he can do something there after the cervical surgery. He wouldn't even discuss it now, he was so worried about the other. Nothing like scaring the cr@* out of a girl!

So I'll go down there for an assessment. It is about an eight hour drive, so I hope I'm up for it, but it's better than waiting three months for the other doctor in Quebec. And, he says he needs another MRI, because the last one they took is FUZZY. Good Gawd, we wait months for one, and this is what we get????? Unfortunately, I don't have the $2K it will take to get one there, so will take my other MRI that is a year older down with me, along with past CT scans too. That should suffice, he hopes.

OK, I'm going to try and attach two of my images as well. I cropped the personal information off them and also to reduce their size. And yes, I have gotten rid of that extra padding that's showing

[Kathy]

You know, many Americans think that they want helthcare like Canada has. Like, wow, they all get healthcare, without paying money!

I wish they could all read so many of these stories, and see that the Canada system is not any better than ours. I can't imagine waiting months for an appointment. When my kids are sick, I call the pediatrician and I am taking them same day (sometimes within the next 30 minutes). If I was told next week, I would lose it. I can usually get into my family dr. next day, my pain specialists, within a few days, my surgeon may take a week. I can get an MRI same day or a day or two, depending on where I go. I can do bloodwork anytime, any other diagnostics are on a walk in system (may take an hour of waiting). When I get to the dr's office, I expect to not wait for more than 20-30 minutes in the waiting area (and usually I barely fill out the paperwork and they are calling me back). I also don't want to be in the room waiting for long for the dr to come in, 15 minutes of waiting, max. I am usually in and out the door in an hour or less. I have been to dr's where it took 2 or 3 hours to wait and see the dr, that was just insane to me (they need to not overschedule themselves). I understand that sometimes something comes up and if they tell me so, and it doesn't happen all the time, it's not a big deal. When I have scheduled back procedures, my daughters oral surgery or my other daughters ear tubes and adenoid removal, we had to wait a week to two weeks for surgery. I do hate that it costs so much money here. But, I am glad that we can just pay and go somewhere and not wait.

[Katie]

Some provinces do have two tier health care, and I'm not against that. Dr. Bitan asked me if I could get an MRI while down there, and when I found out that it would cost ~$2000, I had to decline.

It would probably take several weeks, up to six at most here, to get an MRI on average. But if I wanted to go across the river to Quebec, I can get one in a day or so for only $700. Quite a difference than NYC's $2000. Or, if I said I would go for an MRI at 2am instead of between 8amand 5pm, then I could get in within days. So it's not all bad.

I can't imagine having to pay thousands per month for health care, though either. If I break my leg, it's free to get a cast. I might have to wait hours in the emergency ward, mind you, but I don't have to worry if I have anything in my account.

I think there is a lot of good and bad with both systems, and I'd love to learn more about yours. What would an average family or mature couple without children pay for insurance there? What does it cover?

I think our taxes are much higher to account for the health care, and sometimes I wonder if it would be cheaper to get private instead. Oh yes, we also have private insurance to pay for dental and 'extra' services' like chiro, massage therapy, eyecare, etc. that is usually included in the workplace, and we often have to pay extra for that as well, a certain percentage for both employer and employee.

It would be great to exchange stories.

[Katie]

I have to add that the health care here has gone downhill dramatically in the past ten years or so. As the government changes, so does the quality.

It really is a good concept, if you can keep the politics out of it, so don't let our problems completely turn you off the whole idea. I think you honestly have a chance to make a go of it down there, with the right people in charge. Other countries have made a go of it as well, and done better than us. Do your research and make wise choices...JMHO

[mmglobal]

C-spine looks like pretty significant issues... are they talking about doing C7-T1 too?

I'm not a doctor, yada, yada, yada, but I've seen people with similar images told that lumbar surgery would be dangerous with such substantial cord impingement in the neck. (They move you around while you are out... you have your head kicked back and are intubated for hours.) I've seen presentations at conferences showing serious complications w/spinal cord injuries in c-spine related to lumbar surgeries. Unless there is reason to believe that there are no c-spine issues, I would not have lumbar surgery without checking c-spine too, just for the reasons I just mentioned.

[Katie]

Thanks for the heads up Mark. I have been told that by all of my surgeons so far....cervical first. I have no problems with that as long as I get my lumbar done the same week also. Dr. Bitan has confirmed that this is the way he will go too.

I'll post more on another thread...the results of my visit with him....after I finish what I hope is a good night's sleep after a long trip to NYC

[Katie]

Sorry, I forgot to answer your other question. No, there has been no talk about the C7/T1 from anyone (six different surgeons). Dr. Bitan said that the C4/5 will have ADR and C5/6 will be fused to let it repair itself as much as possible...stabilize it to let the swelling go down.

In the lumbar, he will be doing ADR at L3/4, then fusion at L4/5 and L5/S1. He said there is very little motion at those two bottom levels, and putting in the ADR above will minimize the adjacent disc syndrome, the likelihood of the next disc in line disintegrating from the extra load put on it.

It is a good compromise from all the other conflicting opinions we've had.

[Kathy]

Katie,
I am so glad you found a solution for your spine. I would go with cervical first, since 6 surgeons have all agreed on that. There is a reason they have the Dr. in front of their name and we don't! As much as we do know, they went to medical school and we didn't. Plus, I wouldn't want to take the chance of something bad happening (I'm sure lots of people have dodged the bullet; but you don't want to be the one who doesn't).
You are way braver than me having two surgeries so close together; not that you have much choice. It's probably better to get it all fixed at once and be on the road to recovery.
Did you get a surgery date?
Best Wishes,
Kathy

[Katie]

I had written such a lovely long letter explaining all of our plans and reasons why Dr. Bitan is doing what he is. Then POOF!, it disappeared when the computer timed out when I tried to send it. That will teach me, once again, to 'copy' before I press 'send'

We are planning on doing the cervical level first, with what he called a hybrid ...the ADR/fusion combination spanning two levels. It is critical, and he thought that there was a chance that some or much of my severe lumbar pain might be coming from there also, as well as bowel and bladder issues. Such a wonderful word, 'issues'...it covers so many touchy subjects so well

Dr. Bitan's assistant was pretty stunned when he realized that we would be doing everything in one week...guess that doesn't happen often! Whether it was the five levels or all surgeries in one week...not sure what surprised him the most

I must say that I've never met such a kind and caring doctor. He asked questions, and most importantly listened to my answers, then responded and made sure we both understood each other. Plus showed off his wicked sense of humour when I least expected it.

So, while we don't have any dates yet, we are hoping for late May or early June, if not earlier, if everything falls into place. 'Everything' being funding from the province, of course. It can take up to a month for approval (or not), but since I have been waiting three years already, and Dr. Bitan has made the urgency of my situation very clear in a letter, I am hoping that it will be pushed through much faster than that.

This will be the kicker...the $$$$. The cost for this is so far out of my league, it is insane. Well over $100,000 without insurance. But I am thinking very positive thoughts that it will all come together sooner than later. Fingers crossed everyone!

[treefrog]

That is wonderful, that you were able to get some answers and a plan. And it sounds like you feel like Dr. Bitan is the right surgeon for the job, that's very important.

I will hope that the funding comes through for you, and that you can have surgery as soon as possible.

[Katie]

Thanks Cathy. I am on a roller coaster of emotions right now, with worrying about the funding coming through, etc.

We did have a marvelous time in the Big Apple though. Our two year old Australian Shepherd was awed by the glass elevator...to put it mildly! After a few trips up and down, we didn't have to convince him to come in quite so much...and the tropical trees inside the hotel sort of messed with his mind as well, from a dog's point of view "But Mom...they are here for a reason!!!!" It took a quick walk in the morning to get him outside to the 'proper' trees.

Good news is that my neurologist has agreed to sign my application for the out-of-country surgery for the Insurance. After quite a lecture about what happens when 'something goes terribly wrong and our local doctors have to clean up the mess...." He then offered to put in an 'urgent request' to the NS who I was supposed to see eight months ago........I politely declined, unless there is no way in h#&& that I can get to Dr. Bitan

[Nairek]

Katie,
I am 12 weeks out from an anterior/posterior lumbar fusion which was performed by Dr. Bitan. I can tell you from personal experience that he is an awesome doctor. Although I hated the idea of having to have go through another discogram, an SI joint injection, & a facet block, I knew he was doing that to make sure that I was the perfect candidate for the surgery that he was going to perform.

After my insurance company denied my request for ADR surgery, Dr. Bitan got on the phone with the medical manager to try & get them to change their mind. I believe he called them "narrow minded" when they continued to refuse to approve ADR surgery.

I spent 6 days in the hospital due in part to my body not behaving. Dr. Bitan stopped in to see me just about every day to see how I was doing. I was in total shock since I totally wasn't expecting that.

I can honestly say that you are in good hands with Dr. Bitan. I wish you the best of luck & hope that you get the relief that you are looking for!

Karin

[Katie]

Thanks Karin! I first read your response yesterday, but could not get logged into this site last night. I finally had success this morning.

As I said in my PM, you gave me such reassurance with the post here, but scared the c*#$ out of me with your other posts about complications. I was just about in tears last night before going to bed, as I read what I thought was very conflicting information....great feedback about Dr. Bitan himself, but lots of problems with pain control, etc. And that was with one level of fusion, and I am facing five levels over just a few days...two one day, then three more within a week.

AND, I know just enough about fusion to be afraid...I researched hard against it to force the insurance to approve ADR for me. Then came the conflicting information and here I sit...with an awesome doctor whom I have personally met and trust, who wants to do exactly what I didn't want...partly anyway.

I do believe that the fusion at the lowest levels of the lumbar will not be a bad thing, but I think I would rather have two levels of ADR and one fusion instead of one ADR and two fusion. What would be the reasoning for two fusion? I have no leg pain, but do have spinal stenosis, bone spurs and compressed flaval ligament in the lumbar. I understand the cervical more...because of the damage already done.

Would it be reasonable to ask for two lumbar ADR + one fusion? My problem is that I don't know what the indications are for that. How do they decide how many levels of which they are going to do, is my main question, I guess. Any answers out there? My MRI images, both cervical and lumbar, are posted on Pg 3 of this thread.

[Kathy]

Originally Posted by Katie

Good news is that my neurologist has agreed to sign my application for the out-of-country surgery for the Insurance. After quite a lecture about what happens when 'something goes terribly wrong and our local doctors have to clean up the mess...." He then offered to put in an 'urgent request' to the NS who I was supposed to see eight months ago........I politely declined, unless there is no way in h#&& that I can get to Dr. Bitan

Katie, I completely understand the lecture about the what could go wrong and we don't want to have to fix their mess stuff. I mean, in no industry do you want to have to go back and fix someone else's mess up. I think that there is the close mindedness toward the ADR surgery and they want you to stick with THEIR plan and do it their way. I get that too. But, when you know something is out there better, then you want to do that. I think you are making the best decision with the information you have. I'm sure my surgeon wasn't thrilled that I left the state and did the trial, as they were just ready to jump to fusion when insurance denied me. I knew that the best thing for me was ADR and I went with it. Trust your gut instinct and know you are in great hands! Let us know how it's coming along, Kathy

[Katie]

Yes, but this was almost a threat...'do this and you are on your own'. What he will not recognize is that I'm on my own anyway....no referals have produced a treatment plan for me. While he said he contacted the NS last summer, I have heard nothing. Yet all of a sudden he can put in an 'emergency referral'? My MRIs are from 07 and last fall, so my condition was the same then...urgent and critical....at risk for quadraplegia at any point from a small fall or bump.

So now he can get me in because I want to go out of country? This enrages me.

Also, another patient here has had treatment that did not solve her problems, and the acting surgeon then refused to see her again. Why is that acceptable when he is threatening the same if I go elsewhere?

Why are there no morals in health care anymore? My veterinarian cares more for my dog than the local doctors care for me. Dr. Bitan jokingly said that I should have gone to a vet....I would have been fixed my now, and he is right!

[Kathy]

Dogs do get better quicker care than us, maybe we should all switch to seeing vets There would be an uproar if the (what's the groups that are all about animal rights?), anyway, if one of them found out animals were being treated like we are. It would be inhumane.

I wasn't saying that I agree with the dr., just that I get where it is coming from. I did the same thing and went outside of their treatment and did what I wanted. I've also had dr's 'dump me' when their treatment did not work. Bottom line is that you are in the only one living in this kind of pain and you are doing what is best for you, not their ego.

[Katie]

LOL, I wonder what the time line is from first starting medical school to the giant ego setting in? Or maybe you have to have one to qualify for medical school

Present company on the board exempted of course, Dr. J

And Dr. Bitan as well....I've never met any doctor quite like him....very caring and empathetic as well as brilliant. What an unusual and wonderful combination. I know from others' posts here that more doctors like that do exist, but they only seem to be in the upper levels, that once they have achieved 'greatness', then they join the human race again

(PS: PETA is the animal rights group) And Dr. Bitan's daughter is a veterinarian...so he knows what he's talking about with that as well it seems My best friend is also a vet, and is able to give me a number of comparisons with this. It's time to get that pet insurance just in case my pup needs the same surgery some day. He may hurt himself trying to keep up with me after my surgery...how's that for optimism !

Thanks again for raising my spirits. Off to search for some spring wildflowers...a short walk that is.

[Nairek]

Originally Posted by Katie

Dr. Bitan's daughter is a veterinarian.

I didn't ask Dr. Bitan about his family. I had no idea that he had kids, let alone 1 who was a veterinarian. How cool is that?!?

Interestingly enough, I had always wanted to be a vet but never pursued it.

[Katie]

Yes, we started talking about horses, one of my passions, and he said his daughter was the same way. And that she eventually went on to be a large animal vet. Very cool as one of my best friends is a vet as well, and has helped me a lot with this battle.

Dr. Bitan was very talkative with us, and I was surprised when I think you said that he didn't talk a lot with you. Could have just been the day, I guess. He had just come out of surgery when he saw us, and it wasn't a normal patient day; he made special room for us and was very kind. Maybe I just talk too darn much

[treefrog]

Originally Posted by Katie

I do believe that the fusion at the lowest levels of the lumbar will not be a bad thing, but I think I would rather have two levels of ADR and one fusion instead of one ADR and two fusion. What would be the reasoning for two fusion? I have no leg pain, but do have spinal stenosis, bone spurs and compressed flaval ligament in the lumbar. I understand the cervical more...because of the damage already done.

Would it be reasonable to ask for two lumbar ADR + one fusion? My problem is that I don't know what the indications are for that. How do they decide how many levels of which they are going to do, is my main question, I guess. Any answers out there? My MRI images, both cervical and lumbar, are posted on Pg 3 of this thread.

You should be able to ask Dr. Bitan these questions, and get answers that satisfy you. I mean, you definitely should get the answers from him, before surgery.

[Katie]

LOL, yes treefrog I will definitely talk to Dr. Bitan a lot more before the surgery. I was trying to satisfy my ever increasing (and not so patient)quest for knowledge while we were away this week though.

I am unable to talk to him myself for awhile as I am stuck at my in-laws and have nothing else to do except come on here and ask questions

Errrr, that is, I'm doing extensive research for my upcoming surgery and can't join anyone right now for those cocktails and bridge....in-laws...can't live without 'em, can't shoot 'em

[treefrog]

Are you not able to put in a phone call to him? I know surgeons are sometimes hard to contact.

I understand about just trying to get some answers yourself, and then verifying them with the Dr. I have found it is very helpful to me to do this. It helps me to understand what questions to ask, and to understand the answers as well.