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Sewing Violinist 01-09-2015 12:35 AM

New Member Glad to be here
 
Hello,
I have a story similar to many who have posted here. Spending years in pain with a spine growing older everyday waiting for a treatment that will hopefully be available in my lifetime. I'll try and keep my history brief, chronic back pain for 24 years. About 8 years ago I started experience numbness in my hands and feet and radiculopathy I did chiropractic, PT (five rounds in the last 5 years) OT, aqua therapy, cervical traction, massage, acupuncture, oral medications (muscle relaxants, otc, NSAIDS and ultram {which makes me anxious and gives me insomnia but I have refused anything stronger}) am I forgetting anything? Oh yeah, Pilates. My symptoms have been chronic: nothing has really worked. I've seen multiple physicians my GP, orthopedic surgeons, rheumatologist, physiatrist, and neurosurgeons. My last visit with a neurosurgeon was in 2011. MRI results: C 3-4 mild annular bulge, C 4-5 small central disc protrusion which almost makes contact with the cord with mild canal stenosis, C 5-6 small central disc protrusion. I was told at that time that I had DDD at three levels the worst being C 4-5 and C 5-6 and I would need surgery in the next 5-15 years and if I want to avoid fusion to wait as long as possible for an ADR, which at the time could only be done on 1 level. So I've been waiting, in pain for the last 4 years. Funny thing, everyone always asks me how did I injure my neck. I've never had an accident, as far as I can tell its just been wear and tear. I did play the violin for 8 years, and I'm curious if that is a risk factor?

Then, in December I stumbled upon the Restore Clinical (M-6) trial The RESTORE Clinical Trial that is taking place across the country and I contacted Stanford since it is the closest to my area. However I got word today after the MRI review that I am not a candidate for the study because I need treatment on more than 1 level, which I knew, but i wasn't sure and I'm thankful for a second review of my MRI. I am not disappointed at all, but maybe someone else who needs one disc replaced and wants an M-6 will find the link useful. If I do need ADR I want it done right, the first time so I don't have to go under the knife again. I never considered going out of the country for ADR until I started reading this board. Of course, I would like something that my insurance covers and money is tight (paying for oldest son's college tuition.)
Does anyone know of any clinical studies in the States for cervical disc replacement on more than 1 level? I'm trying to avoid cervical fusion and I live in a rural area, so I wouldn't let any of the local doctors operate on my neck anyway. I'm fortunate I can still work and I would like to be able to keep it that way.

If I chose the microdisctomy (also not covered by my insurance) route while waiting for multilevel ADR what is that process like? I would assume I would need to have my MRI repeated since it is now 4 years old. I really learn a lot for hearing about other people's experiences. You all are so positive and I really appreciate this group already.

43 years old (too young for all this to be happening):D
cervical radiculopathy
mild carpal tunnel
sciatica
2011 MRI results:
C 3-4 mild annular bulge
C 4-5 small central disc protrusion which almost makes contact with the cord with mild canal stenosis:(
C 5-6 small central disc protrusion.

drewrad 01-10-2015 02:04 PM

Sorry for the trouble you have been facing for far too long. My advice is to immediately get European consults for your situation. Do not waste any more time. Quit paying the college tuition if necessary and run like hell to Europe.

24 years, gentle lady, is enough.

Also get a complete MRI. The sciatica suggests more than just the neck.

Dema 01-10-2015 05:36 PM

Reposting this as I posted it originally under Kelly's Post Surgery by mistake!

Hi Sewing Violinist, I am sorry about your suffering and pray that you will find the right procedure & treatment to help you get some relief from your pain symptoms.
In my quest to find a solution to my cervical problems, several spine specialist told me that though I have multi-level issues (C3-C7), that a significant percentage of people over 40 would show problems in their MRI's, but would be asymptomatic & have no pain to complain about. So it is important to identify the specific levels that are contributing to my pain symptoms, and try to fix those only. Of course, there is a risk that the other bad levels will degenerate further in time, and may start causing pain and require future surgeries! Insurance in the US only approved the Mobi-C for 2-level ADR, and as some of our friends in this site have showed, it is not easy to get the insurance to cover multi-level surgeries. The other option here in the US for mutli-levels, is hybrid (ADR & Fusion). From the tens of US based spine specialist that I have contacted, I would do the surgery with Dr. Lauryssen or Dr. Wohns, but I am leaning toward the M6 and will need to go to Europe for that, unless the FDA approves the M6 in next few weeks!
Finally, if you do any diagnostic procedures to identify the specific levels responsible for your pain symptoms, please be careful selecting the right doctor to perform this. As I was 2 weeks from surgery (M6 ADR scheduled for 3/13/2014) in UK and the Dr. performing a C6 nerve root block here in USA injured the spinal cord, and the surgeon could not operate until the cord heals (still waiting!).
Dema & Raouf (husband)

NJ Gene 01-11-2015 02:39 PM

Sewing Violinist,

Welcome to the forum. I'm very sorry to hear about the pain you've been going through for 24 years. What concerns me the most is that you mention that at C4/C5 you have a protrusion that almost touches spinal cord. In my opinion, seek out several surgeons in the U.S., as well as Europe who perform ADR. I had a similar situation twice, in 1998 and in 2010, but my protrusion was pressing against the spinal cord each time. I had fusions at both levels. I was not familiar with ADR in 2010 and might have elected to go that route had I known about it. Fortunately, I have good range of motion even though 2 levels are fused.

Many members will give you suggestions. I recommend that you contact Texas Back Institute (TBI) and have Dr. Zigler or Dr. Blumenthal review your MRI. They are one of the best places in the U.S. for ADR. They also have a good record with insurance reimbursement for ADR. It might turn out to be a situation where you have a hybrid approach (ADR one level, then fusion the level below that and ADR on the bottom). Even if insurance covers one level of ADR and the fusion and you have to pay for one level of ADR yourself, you will save a lot of money, as compared to paying the entire cost yourself. However, I do recommend that you get the opinion of some European surgeons as well. They have more experience in ADR than most U.S. surgeons and they use some of the most advanced devices (i.e. the M6 is one of them), many of which aren't approved yet by the FDA in the U.S. It's kind of ironic that the M6 is produced in Sunnyvale, CA, but is not approved by the FDA, yet it's been used in Europe for a decade.

I wish you the best of luck whichever way you end up going.

Gene

colorado babe 01-12-2015 09:35 AM

I second what NJ Gene said however, I feel my surgeon did an awesome job as well. He is in Colorado and performed a multi-level ADR at the C5-7 and a fusion at the L5/S1 and he gave me my life back. I am almost 3 months post surgery and if you saw me now you wouldn't ever know that I was in the pain since 1998..

There are many great surgeons here in the U.S. and as we all know they are limited to what they can do but if I were you, I would try to find someone who you really click with and go with it. Whether it be in the US or abroad.


If you do decide to go to Europe, you may want to touch base with your insurance to see if they will cover your neck if in the future you should have problems. This is a concern by many and I highly suggest you do your homework before going that route.

I wish you luck on your research and decision. You will know what is best for you. Welcome to the Board. :beer:


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