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  #1  
Old 09-07-2010, 11:12 PM
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scotto74 scotto74 is offline
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Default Hello everyone -- multi level DDD in the C spine, cord compression at 5-6 and 6-7

Hello everyone,

I have been battling a slowly deteriorating neck for the past 6 years (mostly inherited, but have had some minor auto accidents and ran a marathon), and have finally reached the point where my doctors feel I must have surgery to relieve the compression on my spinal cord at C5-6 and C6-7. So far, I have seen two surgeons (Johns Hopkins and New York Presbyterian Hospital) who both recommended a two-level fusion, another (UCSF) who has recommended a hybrid surgery (fusion at 6-7 and ADR at 5-6). I've also been in touch with Dr. Bertagnoli and Dr. Fenk-Mayer, who are recommending ADR at 5-6 and 6-7 (and possibly levels above pending further x rays and EMG results) -- however, I am admittedly a little apprehensive about going overseas to have surgery, especially if I have any complications or need any type of follow-up surgery or revisions.

I also reached out to the Texas Back Institute after doing some research on here, and got some disappointing news today. Dr. Zigler and another surgeon reviewed my information and concluded that my condition was "not surgically remediable" and referred me to a local surgeon at Jefferson Hospital in Philadelphia (close to my home). I have an appointment with Dr. Bitan in NYC next week and am hoping to get some better news...

The compression on my spinal cord is starting to affect my legs (difficulty walking uphill, up stairs, stiff, achey and increasing amounts of nerve pain), and the surgeon I saw at UCSF told me in no uncertain terms that I need to have this surgery ASAP to relieve the compression on my spinal cord.

I guess I'm just looking for any insight you might have in terms of other possible surgeons I might be able to talk to, or any other advice or guidance you might be able to offer. I feel somewhat lost right now, but I know that I need to take action soon!

I look forward to getting to know some of you, and thanks in advance for taking the time to read my post -- or any thoughts or insight you might be able to offer.

Best regards,
Scott
__________________
Diagnosed 6 years ago (at age 30) with multi-level DDD of the C-spine
Have had numerous epidurals, nerve root injections, PT, etc.
Now have severe stenosis and cord compression at C5-6 and C6-7 -- also have herniations and some stenosis at two levels above
Cord compression is starting to affect my legs and movement, nerve pain has increased
Need to find a surgeon soon, hopefully not a two-level fusion
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  #2  
Old 09-08-2010, 03:12 PM
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Harrison Harrison is offline
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Scott, thx for your eloquent introduction. You've already made some considerable progress indeed.

Unfortunately, you seem to have an incredibly wide range of recommendations! Can you tell us why Dr. Z said that your C spine was "not surgically remediable?"

Dr. Bitan is highly experienced as you may know, as are the other docs you mentioned. You're on the right track getting these assessments!

BTW, do you happen to know the degree of compression on your spinal cord? Did they mention the specifics on the radiology report?

I hope we can help in your journey to the right decision. BTW, what is your PCPs role in all this?
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #3  
Old 09-08-2010, 04:19 PM
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scotto74 scotto74 is offline
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Harrison, thanks for responding... this board has definitely been a good source of information along my journey, so thank you for providing such a great service and sounding board!

As for Dr. Z, I did not get a chance to speak to him personally unfortunately. Someone in his office called me back to break the news. The line "not surgically remediable" really felt like a punch in the gut! I tried asking whether she meant that Dr. Z (and the other surgeon who reviewed my case) didn't feel that I needed surgery yet -- or whether things had gotten so bad in my neck that they didn't feel they could help me. She said it was the latter. She basically just told me it didn't make sense for me to make the trip to TX, and gave me a referral for a surgeon in Philly. My gut feeling is that they don't want to take my case maybe because of its complexity -- I don't know. I had another surgeon at UPenn in Philly tell me something similar last fall. He said he could attempt a laminectomy to try to widen the area around my spinal cord, but there was no guarantee that it would help. He also said he would not attempt a two-level fusion on me because he felt it would be too risky.

I'm not really sure about the degree of compression, but I've attached a copy of my latest MRI report, which was taken on May 18th...

My PCP has really not been involved at all in the process -- however, I have been receiving treatment over the past 6 years under the care of the Penn Spine Center, so I consider them like my PCP for my neck. They are strongly urging me to have surgery at this point, as they feel there is not much more that can be done conservatively and I am starting to show signs of myelopathy. However, they are not really providing much guidance in terms of choosing a surgeon or the whole fusion vs. ADR decision.

I'm staying optimistic and hopeful for my appointment with Dr. Bitan next Thursday, and I'm also seeing an orthopedic surgeon (Dr. Jason Cohen) at Monmouth Medical Center that morning. He performed a 3 level cervical ADR for a good friend and work colleague of mine, and he has been recovering very well so far.

Sorry for the lengthy reply, but thanks again for responding Harrison!

Scott
Attached Files
File Type: pdf MRI May 2010.pdf (766.0 KB, 33 views)
__________________
Diagnosed 6 years ago (at age 30) with multi-level DDD of the C-spine
Have had numerous epidurals, nerve root injections, PT, etc.
Now have severe stenosis and cord compression at C5-6 and C6-7 -- also have herniations and some stenosis at two levels above
Cord compression is starting to affect my legs and movement, nerve pain has increased
Need to find a surgeon soon, hopefully not a two-level fusion
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  #4  
Old 09-08-2010, 05:43 PM
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Harrison Harrison is offline
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Scott,

I am a bit surprised and sorry to hear more details of your cervical spine, especially problems at T1-T2.

I noted that on your MRI report there is a history of brachial neuritis. Did this precede the onset of cervical issues? How do you think the neuritis relates to the condition of your cervical spine?
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #5  
Old 09-08-2010, 05:44 PM
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jss jss is offline
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Scott,

Condolences on your condition. My first and third cervical surgeries were to relieve compression on the spinal cord. However, in my case every doctor I saw agreed on the course of treatment, and no one told me that surgery wouldn't help. I can imagine that you feel punched in the gut.

Dr Zigler's comment still seems ambiguous. Did he feel that his surgical abilities were insufficient for your case? Or did he feel that no current surgical technique would help your condition? Even having read your radiology report, I still have many questions; did Dr Zigler see your problem as neurological, or as being with the vertebra and joints? I did not see anything mentioned in your radiology report for which there does not exist an accepted and generally successful surgical intervention. Did Dr Zigler see something in your images that the doctor that wrote the report missed? As Dr Zigler's credentials are beyond question, it would be a good thing to know what he meant. You can call TBI and request Dr Zigler's notes.

I understand your reservations about surgery in another country. I had a double ADR with Dr Clavel in Barcelona, Spain in 2009, which to date has been very successful. But had there been a problem, not only would I have had no recourse, but my physical and financial conditions would have certainly become much worse. If you do eventually seek foreign treatment, I would strongly encourage a lot of research.

Good luck, Jeff
__________________
C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #6  
Old 09-08-2010, 06:26 PM
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scotto74 scotto74 is offline
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Harrison -- To be honest, I have never even noticed the "brachial neuritis" history thing before, nor has it ever been discussed by my doctors at Penn!! Having read a little bit about it, I'm not really sure that I have the symptoms... maybe it was a typo?? I'm kidding.. Seriously though, I will make a point to discuss it with my doctor at Penn next time I see him for a follow-up.

Jeff -- Thanks for the condolences, I really appreciate it. I'm sorry to hear about your surgeries also, but I'm hopeful that things continue in a positive direction for you. As for Dr. Z, I definitely will call to follow up and try to get more info. I was really hopeful that they might be the answer for me, so you can imagine how disappointed I was to get the news. They really did not offer a reason behind not wanting to see me, only that I should consult with a local surgeon in Philadelphia, and they also suggested that I get a CT Myelogram. When I asked if I should send the results of the Myelogram CT scan, she said "sure" but also made it clear that the doctors view was that they did not see a surgical solution for me. I'll try to get more info and let you know. I'm not in any way trying to tarnish Dr. Zigler's reputation or speak badly about him or his staff. I was just disappointed that I wasn't going to have the opportunity to see them. I'm really hopeful that Dr. Bitan might have a different prognosis for me next week...

Jeff, I'd really be interested in learning more about the process you went through to choose your surgeon -- because I really have no idea where to start or what to look for. I found Dr. Bertagnoli through a Google search, and he seems to be well represented on here and has done thousands of ADR surgeries -- so that's why I contacted him. Beyond that, I really am not sure where to start...

Thanks again, and I hope you both are having a great day!

Scott
__________________
Diagnosed 6 years ago (at age 30) with multi-level DDD of the C-spine
Have had numerous epidurals, nerve root injections, PT, etc.
Now have severe stenosis and cord compression at C5-6 and C6-7 -- also have herniations and some stenosis at two levels above
Cord compression is starting to affect my legs and movement, nerve pain has increased
Need to find a surgeon soon, hopefully not a two-level fusion
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  #7  
Old 09-08-2010, 10:00 PM
annapurna annapurna is offline
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Just a few thoughts on surgeon selection: You're going to need someone who's going to look at your back as an interesting puzzle to solve rather than as a threatening lawsuit when total recovery isn't possible. I'd try to work through phone consults whenever possible when you can't go in person. I'd also spend some serious time in research and thinking for yourself what you'd hope for in recovery. I'm over my head in guessing how much recovery you could expect but if you go in to conversations with potential surgeons talking about stopping the ever-worsening condition and trying to get some of you life back, they may be willing to talk with you a bit more frankly about what they can and can't do for you. Please don't think that I suggesting that you settle for less, but the more you work with the surgeon, the more he/she's going to see you as a person rather than a statistic. Laura's had good luck with her back but the problems she's fought, and is still fighting, with her knee have become so consuming that she's really only walking now because a surgeon decided to treat it as a challenge to solve. Of course, he up and quit so we're going through the step now of looking for another Don Quixote surgeon.
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Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
Knee, Shoulder, Toe, Finger, Elbow Problems

Jim - no spine problem but lots of other fun medical challenges

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #8  
Old 09-08-2010, 11:30 PM
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jss jss is offline
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Scott,

I clearly understand that you're not trying to tarnish anyone's reputation; but just sharing your experience. That's all that any of us can honestly do.

How I selected a surgeon ... My experience is so different than your's, I don't know that it can be helpful, but ... here goes. First, I went through the process backwards; I selected a device first and foremost, and then selected a surgeon.

I'd had two fusions ten and eight years earlier. I'd since also earned two pre-med degrees and so knew in 2008 when I started having problems again that two more cervical fusions would leave me severely debilitated for life (I'm 47). By 2008 cervical ADR was available, but the ones available in the US would, in my view, be only marginally better than fusion because none of them (including the one that Dr Zigler wanted to implant in me) cushioned axial compression. The Nuvasive NeoDisc did, and I tried to get in on the trial; but because it was a double blind study, I had a 50% chance of waking up with another fusion. I pleaded with Marc Kowalkowski, the director for the NeoDisc trial at TBI, to be assured of an ADR, but to no avail. Since the M6 had a proven track record with thousands of implants (overseas), and since it cushioned axial compression and addressed the major problems with other ADR implants (subsidence, migration, facet joint & adjacent segment disease), and since I was an engineer and felt qualified to make a decision on a device (rightly or not), I decided to have M6 ADRs. Since the M6 was not, and still is not, approved for use in the United States, I accepted that I'd have to go overseas.

With the device selected, only then did I set about looking for a surgeon. Of course I looked into Stenum and Bertagnoli (Zeegers does only Mobi-C). I didn't expect my insurance to pay, so I looked for less expensive avenues with surgeons just as qualified. I went to PlanetHospital.com and Healthbase.com; two companies that hook up patients with international avenues for treatment. To my shock I learned that the M6 was not approved for use in India (where I was fully expecting to go)?! There were only a handful of other options that turned up that use the device I wanted. Only Dr Clavel at the Barcelona Spine Center in Barcelona, Spain met all of my cost/credentials criteria. He wasn't even close to the cheapest, but the cost was two thirds what I'd pay in Germany. He had only about a tenth of the experience of the Germans, but at almost 300 ADRs performed (only 10 at the time with the M6), he had more than any US surgeon. He'd also been involved in ADR R&D, and went to high school, college and medical school in the United States.

When I put all of that into a pot and mixed, and did a cost/risk/outcome analysis, the decision had been rendered academic; so I went to Spain. I've since finished two half-marathons, one full marathon (with a new personal best) and a 100 mile bicycle race.

That's what I did, and how and why I did it. So far, it looks like I made the right decision.

BTW: Since my double ADR I have seen a few patients come on this site that have had highly successful surgical outcomes in England. Had the English options presented themselves during my research, I would certainly have looked into them as well.

Good luck, Jeff
__________________
C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #9  
Old 09-10-2010, 01:20 PM
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scotto74 scotto74 is offline
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Jim,

Thanks so much for sharing your thoughts and suggestions. Alot of what you said in your post really hit home with me. I think why this process has been taking longer than I anticipated is because I am really trying to find that special surgeon who thinks they can help me despite the many challenges in my cervical spine. So far, the doctors who really seemed caring and confident they could help me (Dr. Bernard Rawlins at NY Presbyterian and Dr. Dan Sciubba at Johns Hopkins) both agreed in the recommended approach -- a two level fusion at 5-6 and 6-7, which is a surgery I really don't want to have (my older brother has had three failed cervical fusions and is headed for a fourth, but that's another story that I don't really feel comfortable sharing). Dr. Mummaneni at UCSF suggested a hybrid surgery (fusion at 6-7 and ADR at 5-6) but I only had like 5 minutes to talk with him so I didn't really get a great feel for the personal side of things. I'm really hoping that Dr. Bitan might be that surgeon for me, who looks at my situation as a puzzle he can help try to solve. I'll know next week, but I'm definitely keeping my fingers crossed.

As for my expectations for recovery, things have gotten so bad for me physically that at this point I'm really just hoping to retain as much functionality in my legs as possible, and avoid some of the long-term damage that can result from myleopathy. I'm already having trouble walking, having really uncomfortable nerve pain radiating down my legs, and starting to have other worrisome developments. I just hope to arrest of all that -- and have the best chance for a normal life possible. Sure, I'd love to play tennis (my lifetime passion) or hoops again -- but I realize that may not be in the cards for me.

As much as I want to do all of my research and find the best possible surgeon and surgery for me, I also feel like I'm running up against a clock here with this compression on my spinal cord. Each day my legs ache and stiffen up a little more, and my hands feel like they are getting increasingly clumsy. So hopefully I will find a surgeon soon and get a date on the calendar!

Thanks again for taking the time to write, I really genuinely appreciate it. And I wish you and Laura all the best of luck in her ongoing journey and in finding the right surgeon!

Best regards,
Scott
__________________
Diagnosed 6 years ago (at age 30) with multi-level DDD of the C-spine
Have had numerous epidurals, nerve root injections, PT, etc.
Now have severe stenosis and cord compression at C5-6 and C6-7 -- also have herniations and some stenosis at two levels above
Cord compression is starting to affect my legs and movement, nerve pain has increased
Need to find a surgeon soon, hopefully not a two-level fusion
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  #10  
Old 09-10-2010, 01:27 PM
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scotto74 scotto74 is offline
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Posts: 18
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Jeff,

Thanks for providing the detailed background on your search for a surgeon and a device.. what an amazing journey! I wish you all the best of luck with your continued recovery, and I hope you keep on cycling and running those marathons!! I ran one (Chicago) right before all of my neck problems started, and it was an incredible experience. I've pretty much given up on the idea that I'll ever run one again (due to my neck), but I think it's amazing that you are back at it!!

The M6 really does sound like a great device with alot of potential. I'm not sure if it would work for me given the condition of my spine, but it sounds like a very interesting option.

Do you know of any docs in England that might be worth checking into? I thought I saw the name Nick Boeree (sp?) on someone's post recently (I think it was Tyler). I just need to make a decision and move quickly in the next couple of months.

Thanks again for sharing your experience, and best of luck for continued progress!

Scott
__________________
Diagnosed 6 years ago (at age 30) with multi-level DDD of the C-spine
Have had numerous epidurals, nerve root injections, PT, etc.
Now have severe stenosis and cord compression at C5-6 and C6-7 -- also have herniations and some stenosis at two levels above
Cord compression is starting to affect my legs and movement, nerve pain has increased
Need to find a surgeon soon, hopefully not a two-level fusion
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