No pain yet Kyphosis, Severe Stenosis, Dr. Cappuccino. Help?

[Deemzee]

Hi All,

I'm not by definition "new" but haven't posted much so I'm re-introducing. Long story shorter: I have little or no pain, save some sensations in my hands and fingers and some mid feelings in my neck-- which makes all of this rather unusual. That said, I have (I'm told), problems at c3-c7 with severe spinal compression at c45 and c56. One guy described the cord flattening at c45 as "horrible". Not easy to hear.

Its all made possible because of the kyphosis I have...and I'd be curious to hear from anyone who's dealt with kyphosis. I've gotten opinions from almost everyone: Germany, Spain, London, lots from NY, Buffalo, Texas. No one truly agrees but having delayed this surgery, I may have painted myself into a corner because more doctors are saying I'm no good for ADR...but I don't want a 3 or 4 level fusion -- which is what many, but not all, say I need. I had settled on Dr Nick Boeree in London who at the time was suggesting a simpler two-level ADR approach and felt we could leave the kyphosis (most prominent at c34) alone. He was monitoring me each year and had me avoiding surgery until unavoidable. Then as many of you know, tragically, he had a fatal motorcycle accident. Sad for so many. He was a good one.

So I've been searching again for the right doctor. At present, I'm talking to Dr. Andrew Cappuccino in Buffalo. Does anyone have any info on him? I've heard some mixed reviews but not the most trustworthy (internet) sources. He's one of the few who will do a hybrid: ADR, FUSION, FUSION, ADR. sounds good to me but others say they wouldn't do it, NO WAY, especially on an unstable neck with kyphosis. It might be risky given my instability. I'm confused and terrified and afraid I'm searching for a solution that might not be prudent... even if a well-known doctor is offering it. One guy said a good fusion is better than a bad ADR. Probably true. Wish I had a crystal ball.

[Stonewall_Boris]

Hi Deemzee,

There's another member here TPATTI that I believe has Dr. Cappuccino as well and I believe he's from Buffalo too. You might want to bounce some thoughts off of him.

[TPatti]

Stonewall is correct. I just returned from surgery with Dr. Bierstedt in Germany. The disc that Dr. Cappuccino offered was a hard disc (kineflex) and he would of had to do a hybrid because of that. He agreed that 3 M6's was a good choice and agreed to be my follow-up doctor. My expierence with Dr. Bierstedt has been nothing short of amazing to this point. Besides Dr. Cappuccino I would not even consider any other local doctors (Stoffman, Landee, Moreland, Egnatchik, Hamill, etc) worthy opinions becasuse none of them believe in adr, minimally invasive approaches, or have any hint of progressive medical thinking. I will send you a pm so you can contact me.

[NJ Gene]

Deemzee, Here is a link on Dr. Cappuccino from the AIMIS Spine Group: Andrew Cappuccino | Surgeons | AIMIS Spine I would say that if you like him (after checking all of your sources and getting multiple opinions) try and get the surgery done in Buffalo. I've heard a lot of negative things about AIMIS, which effectively is a group that practices out of a U.S. hospital in Cyprus. Dr. Cappuccino is one member of this group, which consists mostly of U.S. physicians who spend some time there each year doing risky operations without having to adhere to FDA standards and not being subject to U.S. malpractice. IMO, unless you want a device like the M6, which needs to be done in outside of the U.S., you are better off staying here. You have no accountability when you leave the U.S. Furthermore, you have much less of a chance for insurance to cover the costs.

Good luck!!

Gene

[Harrison]

Dr. Cappuccino has been around for years with disc replacement and kept a low profile, while seeing and helping spine patients. I spoke to him briefly years ago; I don't have much to report, other than his many years of experience with ADR.

This page is goofy, but you will see some of his work: http://www.buffalospinesurgery.com/d...lications.html

And pls see this 4 page topic of ADR contra-indications:

http://www.adrsupport.org/forums/f51...ications-9620/

And search for kyphosis, you will find many topics, so use the advanced search:

http://www.adrsupport.org/forums/search.php

[Deemzee]

Thanks everyone. Tpatti, I'll be in touch regarding your experience with Dr. C. He seems like a really good guy, and he's certainly experienced but my case is rather unique when you factor in the kyphosis, and I worry about just how risky his approach is. I've also read some ugly things about him on various "grading" websites but I'm not convinced those are trustworthy...not to mention all of the satisfied people that don't feel the need to post. My experience so far with him does not fit what some are saying. The advice regarding AIMIS sounds spot on. The more I read about it, the more I worry it's exactly as described: a platform for US docs to take on the riskiest cases without repercussions. Unfortunately, as Dr C wants to do two ADRs and two fusions -- a hybrid (which is not FDA approved), I wonder if there is no other choice for him but to do it in Cyprus through AIMIS. This is so hard. I'm a filmmaker, not a neurosurgeon.

[TPatti]

As far as Dr. Cappuccino's reputation let me quote one of the things he said to me after he told me that I needed to go to Europe. He said, "I am sure you know by now that people either like me or think of me as the town heretic because I do not conform to the rest of the thinking in this area." This may explain the wide difference of opinions.
My opinion on AIMIS is that you cannot judge AIMIS as a whole but only by the individual doctor you are considering using that is using AIMIS as a tool. I also sent info to AIMIS, specifically to Dr. Pimenta who I never heard back from. Claire had forwarded my info to another doctor and I believe him to be incompetent based on his surgical recommendation and he never replied regarding my questions about his recommendation. You can find more detail about this in one of my other posts. I think that if you found a doctor that you trusted AIMIS might be a viable resource with and ONLY with the doctor you trust. As I whole, I agree that it is an organization that brings up a lot of questions. I would still recommend getting opinions from some European doctors besides Dr. Cappuccino. Dr. Bierstedt and Dr. Clavel would probably top that list.
Looking forward to speaking with you.

[NJ Gene]

Deemzee, just to let you know, I agree with TPatti completely. AIMIS does bring up a lot of questions, but if you are comfortable with a surgeon, such as Dr. Cappuccino, and he can do the surgery through AIMIS, by all means consider him. My feeling is that if he could do the surgery here vs. Cyprus, do it here. I also agree with TPatti on the excellent European surgeons he recommended.

There is no secret that I am biased against AIMIS. Part of the reason for this was last February, when I was having severe neck pain, the result of a herniation at C6/C7, I got an opinion from one AIMIS doctor, Fernando Diaz, that "This patient is unlikely to benefit from surgical intervention." Excuse me, I was in severe pain, which was radiating down my right arm. Claire, the U.S. representative from AIMIS, told me that I should be happy. I was actually quite upset. This surgeon gave no basis for his opinion, just the one sentence above. When I expressed my feelings to Claire, she suggested that I get an opinion from another AIMIS doctor. I'm sorry, but IMO AIMIS should have a group of their doctors evaluate each given case. In your situation, you already have an AIMIS physician with a good reputation having made an evaluation. If you can be sure that he can operate on you through AIMIS, by all means go for it. However, if you get the run around like TPatti did with Dr. Pimenta and AIMIS, you might have to consider one of the European surgeons he recommended.

Gene

P.S. - I had an endoscopic foraminotomy in March, 2013 to address my herniated disc and I am feeling 100% better. This Dr. Diaz was completely wrong in what he said. I would suggest that all readers on this board stay as far away from him as possible. If you don't believe me, go onto the site Doctor Reviews and Doctor Ratings | Compare & Find Doctors | Vitals , which gives patients' reviews doctors and see for yourself.

[Surprised 1]

Deemzee, I too have kyphosis in my lower cervical spine. I only found this out a couple of weeks ago so I am not a wealth of knowledge but I can share this with you. I spoke with Dr. Beirstedt who feels that using an ADR called the Secure-C in C5/6 and C6/7 will reintroduce lordosis. I'll post w/ any other info about this that I might come across and that may be of help.

[Deemzee]

Surprised-- I am very interested to hear about your situation. I can tell you that I have gotten opinions from many doctors in Europe and the US. It may be that my condition is more complicated -- I have opinions ranging from two-level ADR to multi-ADR/Fusion hybrids to four-level fusion-- but I've found that kyphosis has a tendency to contra-indicate ADRs in many of them. In particular, just this week I was told by Zigler and Blumenthal at Texas Back that I was not a candidate for ADR "due to my kyphosis". Id be curious to hear what they tell you. Mind you that I never spoke directly to either doctor so it may be that the peculiarities and state of my condition may be the primary reason, but that's not how it was related. I've been told by every US doctor (except Cappuccino) that I can't get ADR because of the deformity and theyve been adamant that to do so in my case is extremely unwise. That said, almost every European doctor has come up with some sort of hybrid approach using fusion and ADRs in combination...but no two opinions are identical which is why I've spent over two years researching, questioning, and fearing this. Meantime, the clock is ticking. It may be that im too degraded for the safe application of ADR and so it may not be applicable to your situation but im just sayin'. still terribly confused on which way to go. I do not want to fuse. Period. But i'm terrified of a failed ADR and fearful i might be a guinea pig because of the uniqueness of my case. I'm very interested to talk to dr Beirstedt about kyphosis and the secure-c, so thanks for that.
As for AIMIS, thanks to all for the good advice. I came to it by way of Cappaccino first and my dealings with him have been nothing but highly professional and supportive. I suspect that in a good doctors control it becomes a useful tool for facilitating surgeries and devices that are otherwise unavailable in the US (but it's still unsettling to hear of its shortcomings). And Tpatti-- as for cappuccino's reputation, I do get the sense that he bucks the establishment-- especially in an area like Buffalo-- but my concern involved comments on a few Doctor Rating websites that related bad outcomes, revisions by other doctors fixing his work, terribly long wait times and callbacks, and callous treatment by staff. It certainly makes it harder for me to go to him with total confidence but some of the negative posts were hard to fathom and very suspicious. And happy satisfied people tend not to post. Not sure.