Advice needed on cervical ADR decision

[drewrad]

If the PLL is calcified it is like having a stretched out rubber band without any of its former elasticity meaning it doesn't provide any vertical stability any longer but could cause problems with compression. Sometimes they look healthy, sometimes they do not. Everyone is different. I would let the doc make the decision once in there to see its overall health by getting an actual visual.

I know Bergnatoli actually dissects the ALL and inserts the Prodsic through it then sews it back up.

[Antifragile]

Thanks for the replies. I've decided to research both doctors further and have my surgery after the holidays.

I wish there were a graph or list of the cervical and lumbar successes for both Bierstedt and Clavel. I have been searching it through the surgical outcomes forum, but finding the threads and sifting through the stories is a lot of research.

Does anyone know which doctor has better cevical outcomes (fewer revisions or complications after recovery)?

Again, still haven't heard from Malte after sending his an email with questions over a week ago. Dr. Clavel gets back to me within one day. Communication is obviously a big factor for comfort and peace of mind, but I am more interested in successful outcome numbers.

[Brewster]

jss, there is no plan. There are no options up here. Perhaps a spinal nerve block, worked for me for about a month.

[Antifragile]

Hello all,

Just an update: I have not had my surgery yet. I had planned on having it done with Dr. Bierstedt, but due to a serious family situation, had to cancel it. I was getting ready to reschedule, but I recently heard about a blood spinning procedure called Regenokine (used to be called orthokine). Dr. Peter Wehling in Germany invented it, and many professional athletes have had it done like Kobe Bryant, etc. it's suppsed to be 150-300x more powerful than PRP. They take your blood, spin it, hear it, and inject it back in. Your blood then becomes a powerful anti inflammatory that blocks interleukin 1. It can heal herniated discs.

Two doctors now offer it here in the US, one in NYC and one in LA. I spoke with Dr. Wehling in Germany, as well as the guys who offer it here in Ny and LA and opinions were slightly different. Dr. Wehling suggested I do ADR surgery because my spinal cord is compressed. He said there was a 60% chance that Regenokine could heal me without surgery and resorb my disc extrusions at c5/6 and c6/7. The Dr in Ny suggested trying Regenokine first, but didn't give me details as of how successful it might be, but said it could take a year to heal fully. The Dr in La though I should try Regenokine first - he was very helpful and answers lots of email questions. He said I may see resorption in only 6-8 weeks and it would be ok to give the Regenokine 3 months to work. If not, I could have the ADR surgery after if o wanted and that I would heal faster if I did the Regenokine first. Regenokine costs $15,000 and is not covered by insurance. The doctors in here use fluoroscope guidance, and the doctor in Germany does not, hence why their opinions may be different.

Here are the options:

Regenokine first in LA: (I'm in Ny, but I liked the doctor there better).
Im told it may have a positive effect on my autoimmune disease as its a powerful anti inflammatory. The effects last 2-7 years. It will have a positive effect on all levels of my neck, but IF the disc resorbs (60% chance) it will not be as strong as a healthy disc or the M6. It could also help my headaches which no one is sure is ring caused by the cord compression (some doctors say the headaches are unrelated, Dr. Bierstwdt and clavel say the headaches ARE related to the cord compression as its a common occurrence) If it doesn't work, I'm out $15,000, and my life is on hold longer. I need to get back to teaching and training Jiu-Jitsu 100%. If I wind up needing both Regenokine and adr, I'll have a healthy neck, but will be close to $70,000 in debt after costs of procedures and travel. This will affect my business and other areas of my life. The positives are that it may help me avoid surgery (although I'm not so sure) and I will know I tried something less invasive first and am told I will heal faster from surgery should I get it months later.

Surgery first in Germany: $40,000. Higher chance of success and stronger end result, but more invasive. Will decompress my cord and get me back to training in 3-6 months. Downside is that I'm worried it may not help headaches, it won't address the small hernias on higher levels (c2/3 and c3/4 which I dont know if they're related to headaches). It's also a permanent option and it doesn't sit well with me if I didn't try the less invasive thing first, especially if it doesn't go well. My rheumatologist doesn't like the idea of getting Regenokine injections in the neck after ADR as he says it may introduce bacteria near the implants. The Regenokine dr in las says it's not an issue.

I'm in confusion limbo and hell. The whole decision is giving me lots of stress. Meanwhile I can't train and need to get on with my life.

What do you all think?

Thanks,

-Carl

[annapurna]

My pea brain says that you'd need a convincing argument that your autoimmune disease led to or increased the weakness of your disks if you're going to have a chance of Regenokine reducing your need for surgery. I tend to be a big proponent of the biological repairs but I really need a solid premise for an underlying mechanism before I'm willing to trust them to fix a problem. In the absence of that explanation, I'd suggest that you look at this as two separate but related problems. You have an autoimmune disease that's likely exacerbated when you're in pain. You have weakened disks and cord compression and the pain and disability they cause is enhanced when your autoimmune disease fires up.

If you split those up and address them separately, then you can ask addressing which improves your condition the most, the fastest, the most certain, and the cheapest (up to you to rank which factor is most important).

Side note, Laura gets prolotherapy injections into the C-spine region semi-regularly to deal with the mobility of the Prodisc-C implants. If an injectionist can't figure out how to establish a sterile area to give you injections near your implants, you really need to find a new injectionist. You rhematologist is being careful but a bit too cautious in my opinion. That risk is real but manageable.

[Cynlite]

I just wanted to see if you have been tested for the Radio Frequency Ablation of the facet joints? (also called Facet Rhizotomy.)

I have had six minimally invasive spinal surgeries with four of them cervical to get rid of the horrible non-stop headaches that sometimes turn into migraines and two thoracic to try to correct the problems I have with my legs (I think the problem is cervical but, that's another story.) Finally, in 2013 after 7 years of suffering, a Pain Specialist tested me for the above procedure and in the middle of a level 10 pain headache it magically faded away in one second. OMG HEAVEN ON EARTH! The procedures only last about 10 months for me (had each side done separately) before the headaches returned because the nerves grow back but, it allows me to THINK again and at least function. I just finished two more procedures a week ago. Message me if you want to know more.

FYI, I just this week started emailing with Malte Petersen and have not had any issues as of yet. They now have my complete package. Dr. Clavel is also on my list of doctors to contact. I see Dr. Porter at the Barrow Institute on the 23rd so, that will be my first U.S. surgeon on this round. I'm waiting to find out what these surgeons think of my prognosis so, can't say much about that but, last time the surgeons locally all wanted to do a two level fusion on my neck and I declined. Last round of surgeries went from 2006 - 2010 but, I never improved that much from the minimally invasive surgeries (total cost excluding insurance premiums was about $30,000.). I traveled from Phoenix to Pittsburgh for those surgeries and I did not know anything about ADR at the time. I've got 9 years into this journey and am really desperately hoping that either Dr. Bierstedt or Dr. Porter have the answers because I'm really in bad shape right now and it came on really fast over the last three months. If I can hang in there, I'll contact Dr. Clavel and get him my package as well.

I already know I'll have to appeal my insurance and wait to try and get the Mobi-C with no guarantee they will approve a two level surgery. I'm not in your profession so, either the Mobi-C or the M6-C would probably be fine for me but, I'm really leaning towards the M6-C. It makes sense to me to have a game plan that does not involve waiting even if it does break the bank. Quality of life is more important than preserving cash for later. My point of all this is that surgeries done in the U.S. can also not work so, I think it's always going to be a bit of a gamble anywhere you have it done. I would not go back to my old surgeon in the U.S. at this point. For me, picking a great surgeon is the most important part of the equation. I missed the mark the first time at least for me but, he had some very good reviews from others including a professional wrestler.

Thanks so much for all the information you have shared! Sorry for the long post but, hopefully you found some useful information in it. This is a very good thread. Be well!

[NJ Gene]

Cynlite, you sound like me!! I had two foraminotomies at level C6/C7, once in 2008 on the left side and once in 2013 on the right side. They were effective for a period of time, but IMO, not a permanent fix. I have levels (C3 through C5) fused. At C5/C6, there is a full-fledged herniation, which two years ago was only a bulge. My surgeon at the time said a bulge was "no big deal". Most adults have one somewhere in their spinal cord. However this is a level susceptible to adjacent segment disease (ASD) with the fusion right above it. Also, I have foraminal narrowing at C6/C7, the level at which I had two foraminotomies. I'm now being told to get a CT Scan there. That will help determine where the foraminal narrowing is coming from. It could be that the disc is herniated again or it could be the result of bone spurs. Since I have a titanium plate inside me from the fusion, an MRI doesn't show the best image at that level, but a CT Scan would.

My hope is to get two-level ADR in the U.S. covered at least partially by insurance. For some ridiculous reason, insurance companies often don't cover ADR at levels adjacent to a fusion. That is the dumbest thing I have ever heard, because, in my personal opinion (based on what doctors have told me) that is the most important level to get taken care of, because it stops the domino effect of ASD. I spoke to an ADR surgeon in the U.S this week and asked him why this was the case. He told me that insurance companies are in the business of making money and not necessarily interested in what's in the best interest of the patient. Furthermore, many companies hold on to certain FDA guidelines as long as possible. Up until a year or so ago, the FDA did not approve use of an artificial disc at adjacent levels to a fusion. This has since changed, but some insurance companies try to use this as a reason not to cover someone like me as long as possible.

My thoughts are if I don't get approved for two-level, perhaps they can do ADR at C6/C7, which is giving me the most symptoms and is not adjacent to a level of fusion. Then I can consider something else later. Perhaps insurance companies will relax that rule and eventually I could get ADR at C5/C6. Another thought, while not recommended, might be to get a fusion at C5/C6. I would now have three levels fused C3/C6 but the AJS would end there because I would have an artificial disc at C6/C7.

The bottom line is I'm going to do what's right for me. I'm not going to let the insurance companies dictate my procedure (as nice as it would be for them to cover it). I'm looking at ADR surgeons in the U.S. first, but I'm also putting some feelers out to those in Europe.

Gene

[Antifragile]

Hi Annapurna,

I don't think the autoimmune disease caused
my problem, but having a beneficial effect on the systemic inflammation that is a part of it is a positive potential side effect of the Regenokine. I Regenokine costs less, helps my whole neck, is less invasivemay help my autoimmune slightly but may not be as strong and may not work - leading to a greater financial strain.

ADR is stronger, more certain, gets my cord decompressed faster, but may not help my other levels and is a permanent, more invasive procedure. Still unsure.


Cynlite, no, I have never had that procedure not been offered it because no one knows what's causing the headaches. I had nerve blocks done in the occipital region, but my headaches are in the eardrums, back of the head, and behind my eyeballs and inside corner of my eyes (like brain freeze.) Do you have cord compression?

[Cynlite]

No one knew what was causing my headaches either! I saw an ENT who told me the dizziness was not ear related. I had several thousand dollars worth of tests done at a balance center and they said it was not balance related. I was told I had Occipital Neuralgia by the first Neurologist but, the neurosurgeon who operated on me said I did not so, he never did surgery for it. I believe Occipital Neuralgia is usually at the C2-C3 level and my MRI is fine at that level.

My headaches were in the back of my head initially and behind my eyes mostly right sided. It then developed into a dizziness where I had to hold onto the walls to walk. After my first surgery at C5-C6 which included a cord decompression, my headaches were still there. The dizziness went away. Prior to the surgery, my right eye would twitch for short periods of time (longest was one day) and that went away as well. After the four neck surgeries, the headaches went away for a few years but, then came back. The headaches then expanded their scope to sometimes include migraines that made me light and sound sensitive and caused nausea. The headaches never affected my ears that I recall.

When they came back in December 2014, I can't tell you how incapacitating they were. I just had the second procedure so, for three months I have been really suffering with at times feeling like the pressure in my head would make it explode and I periodically got strange stabbing feelings in my eyeballs. Well, the procedures seemed to have worked again. I'm still healing from them but, I expect to be much better in a week. The drugs and the procedure always cause me to feel ill and give me horrible muscle spasms but, eventually that all heals and the damn headaches are gone. My neck still hurts but, at least I can think again. I hope this detail helps.

I recommend finding a rock star Pain Specialist to include in your team of doctors! I went through four Pain Specialists before finding the one who diagnosed and treated my headaches....thank God!

[Antifragile]

I'm sorry to hear you had so much pain. It amazes me that the cause of these neck-related headaches can't be found. I started suspecting they may be caused by trigger-points in the neck muscles referring pain into head.