Rather despondent new member
 

Hi all. Good to be a member of this forum. I have been browsing for a while.

I will tell you guys my story.

I have suffered with a severe autoimmune condition for almost 3 decades. For many years, it has been intolerable. I mean...torturous. Then, there came news that a few patients had somehow recovered after addressing their cervical stenosis.

I did have disc bulges on scans but had absolutely no pain, headaches, no symptoms whatsoever. Nonetheless, in my intense desperation, I decided to contact 5 surgeons. 3 advised not to have the surgery, 2 said to do it.

I was so desperate, suicidal, depressed, and had been for so long, I decided I would take the chance, come what may. I refused to listen to those who told me not to do it, that I was making a mistake.

I went to Thailand and had C3-C6 fused. It is now 18 months later and my C6-C7 is paining me all the time. The pain is beginning to radiate down my shoulders and I am having mild headaches. To make matters worse, it did not help my autoimmune condition.

I have been fighting to improve my health for almost 3 decades and now, I have made the stupidest move I could ever make. I am 10 times worse off than I was before. I do not know what to do.

The surgeon in Thailand said I am not a candidate for ADR due to facet joint issues.

That is my story. Thank you for reading.

Try Bertagnoli, he is the best of the best.

Thank you for the suggestion. I am going to send my imaging to Dr. Bertagnoli but ..I have been spending so much money on trying to get better over the last 3 decades, that if I have to spend another 100K undoing this colossal mistake, I could end up homeless. Furthermore, it will be more scar tissue and complications and future surgeries.

Just such a mess. But I guess I have no choice but to see what Dr. Bertagnoli says. I did once send images to germany .I think it was onz spine or something like that. This was before my fusion. I did not pay for a consult but the admin person did tell me that the surgeon who saw my images used the term "massive instability". But I had no symptoms. Maybe I could have gone another 10 yrs before requiring intervention.

Anyway, sorry for rambling. This is just so difficult to accept

Try to conservate c6c7 as much as possible.

Maybe it could be replaced your c5c6 by an ADR and building so an hybrid system, so you can try to mitigate stress in your c6c7 level. I am not a doctor though, ask docs here in europe better than asia (germany, france..).

Keep your mind cold and do not desperate, everybody has a mission in this world even auffering cronic pain.

Thanks for saying that.

Suzanne, sorry about your situation. I hope we can help.

In the last 18 years, I have raised the topic of Lyme disease, and other bacteria, that cause disc degeneration. It's never too late to pursue this distinct possibility.

Please read this multipage topic:

https://www.adrsupport.org/forums/sh...rial+infection

Hope this helps!

Thank you for the message :) I have been seeing specialists and trying to get well for the better part of 3 decades so have been tested for everything multiple times, including Lyme. Always negative. Have been on years of antibiotics too, including IV. I felt a little better after yrs of taking them, but I am now 99% sure it is because the meds were acting on gut bacteria. I think the gut microbiome and dysbiosis is to blame for almost every chronic disease known to man. I am finally having some success with fecal transplants.

I believe that the reason the spine degenerates faster with these diseases, is because of the intense inflammation that results from gut dysbiosis. The inflammation damages the ligaments and soft tissues over time.

They have been investigating something called neck-stomach syndrome...the vagus nerve in the upper cervical spine controls a lot.

Not sure if you are familiar with the concept of fecal transplants - if not, it will blow your mind.

It is just so frustrating to finally be a little better after decades of torture, only to have it be ruined by neck pain which I caused myself. And knowing it will only get worse. And the money down the drain....sorry, it is so hard knowing you cannot trust yourself and that you made the most stupid decisions out of sheer desperation.

Before you consider revising fusions to ADR, I'd still (following up on part of my PM to you) recommend some kind of digital motion x-ray to assess your current cervical instability. ADRs are inherently less stable than a fusion, for obvious reasons, so you could end up with an overall less stable c-spine than before your three fusions.

Laura's hypermobile, self-diagnosed Ehlers Danlos, and her two cervical Prodiscs definitely increased her cervical instability. That they also replaced two desiccated and bulging disks that were causing nerve compression says we made the best decision of a bad lot of options but, nevertheless, she's now more unstable than she'd be if she'd not needed surgery at all.

That is terrible. I have no idea if I am hypermobile or not. Some chiropractors say yes but who knows. If I am, its borderline. You know, I had no symptoms at all before the surgery. None. I could have just seen an osteopath. Anyway, I do not think keeping this fusion is the way to go either - my c6-c7 will become intolerable in time, then they can fuse that, then my C2 will start to go.

Is Laura's instability causing her symptoms now? Is she worse than before?

I got so enmeshed in the Jennifer Brea idea...I became convinced of something that was not even there.

I heard that for the lumbar area, they are trying something new...it is something that totally replaces both disc and facet. But I cannot find anything like that for cervical on the horizon.

With all the other massive problems in my life, I don't know if this new one is something I can even handle.

Not to say I will ever be able to afford this, but what if someone used stem cells to try to regenerate facets and then if it helped, they could then to ADR's?

Sorry for whining and thank you for the post

I have had 2 digital motion x-rays as well 2 upright MRI's before the surgery. No one agrees on anything. The chiropractors love to tell me I need a ton of things only they can help with. The experienced American surgeons say I do not have it. One surgeon in Spain wanted to fuse C0-C7. The indian expert said I did not need surgery at all. I did not know what to do and still don't. The American older surgeon said if I went ahead with the fusion, I would be worse off than before and he was right. Another younger American said to do it.

From googling, I see that Dr. Bertagnoli seems to say that multiple level ADR is totally fine if placed right....and that facets can be a little bad and thats fine because the ADR can actually relieve pressure on them. This seems to be totally different from what other surgeons say.

Is Dr bertagnoli really that much better than everyone else? Do the people who have had multiple level ADR's with him really seem to do better?

I know the one difference is that he reconstructs ligaments or something, right?

Thank you for reading.

Bertagnoli may use a ligament sparing technique but you still need to remove some of them to access the spinal disks. Depending on the approach used for your fusion, that may be moot because the ligament damage from that surgery may be more than what Bertagnoli might do.

Bertagnoli's one of the best for multi-level and cases on the edge of being acceptable. He's expensive but often the surgeon of last resort for that kind of case. As to whether his patients do better - maybe. I'd say over the years, he's had a few real failures and a number of patients who didn't improve as much as they'd wished but he's also taken patients that would have been fused from skull to ribs and rebuilt their spines with a hybrid set of ADRs and fusions and given them their lives back. He's definitely one to talk with to see what you could do but there's the risk of not being able to create an stable ADR from a fusion.

Laura's much better off now than when she had the bulging disks. On the other hand, the instability has led to vagus nerve irritation and an inability to engage any activity with the hand above the shoulder. Long-distance swimming, for instance, is now off the program after being able to swim 5 miles a day.

I don't know of a ADR & facet replacement for the c-spine, though our data is about 15 years old on that front. I do know of two people using stem cells with guided prolo injections to try to regenerate disks. Facet injections are even more fiddly than that but they might, if you discuss it with them, flood the region and hope some passes through into the facet capsules.

One thing I liked about Hauser at Caring Medical was that he was focused on the effect of instability on the jugular veins. They pass through the neck in a sheath that also holds the vagus nerve. Instead of arguing too much over instability, he had doppler ultrasound check to see how open the jugular veins were under different conditions. More instability means more conditions where one or both can close. Being an engineer, I tend to like numbers and measurements. You can still argue that it's untested theory but it's at least an internally consistent untested theory.

How painful and frequent are your cervical symptoms right now? If you wore a cervical support collar for a week or two to help with the instability you may or may not have, do you think your symptoms right now are intense and frequent enough to tell if it's helping? I'm not suggesting this as a long-term solution but a cheap diagnostic to see if your feelings about instability at C6.7 and C2 are accurate. If they are, you could approach Bertagnoli, and whatever evaluation fee he charges, with some confidence that it's a worthwhile path to take.

How wonderful a response! Thank you. I am confused as to whether your name is annapurna or laura lol

well, i had heard little things here and there that maybe the vagus nerve has some connection with levels further down from C2 also but I could not find anything about it. You gave me some helpful info!

I was assessed long distance for blood flow issues by neurovascular expert dr liu and i was all clear on that front.

i guess i will just let the c6-c7 pain worsen until i can no longer take it and then see what to do. I am sure you are right in that ADR with preexisting fusion is probably even worse than jusr ADR instead of fusion.

Forgiving myself for what I did despite zero symptoms is the biggest hurdle.

If I send images to Dr Bertagnoli, he might say that if I want reversal I had better act now - that is, if fusion has not taken place yet. So that is another mountain to climb.

thanks so much for your time and help btw

When I started on my journey I was very intrigued with Dr. Bertagnoli.

Certainly he is very skilled. However I'd only personally go with an ESP device... More so for lumbar, but I have both... And in the end both cervical and lumbar are ESP.

Anyway - at the time Dr. Bertagnoli did not use ESP at all. Not sure if he does today, but it ruled him out as a doctor for me.

Given your situation I would consider him a top candidate.

I know of one person who had a cervical revision and she went to Dr. Schmitz. One of the benefits there might be that he's an actual neurosurgeon I think, as opposed to a spine surgeon? I really don't know, but something for you to consider perhaps?

Same reason for me, that's why I did my cp-esp with dr. clavel. Still with pain but for the moment I would say i feel better with cp-esp than fused.

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Elorpar

2020 Accident at previous c5c6 degenerated level
2020 c5c6 herniated disk compromising spinal cord
2021 C5/6 fused but bone spures not removed
2022 Chronical pain at c5c6, bone spurs removal and c5/c6 fusion reversal to cp-ESP by Dr. Clavel

wow. so you guys actually had a fusion changed to an ADR? elorpar you mention you are stilli in pain. may i ask what kind of pain and where it eminates from? why do you think the ADR did not improve the pain more?

Jack- did the person you know do well with Dr. Schmitz? May I ask why you want only an ESP? I know very little about this so far.

When I had my neck done, I also had L4-L5 fused. It is maybe 19 months since then and the pain is really starting to bother me at the level above the fusion. Wonder if I should try PRP or something. I don't think they inject the disc itself so not sure what they do...

I heard there is a new device going on trial that will replace both disc and facet in lumbar...

I think Cheryl0331 is the person who was revised by Dr. Schmitz, https://www.adrsupport.org/forums/sh...ad.php?t=14123.

There's a clinic in Austin participating in a trial for the combined lumbar ADR and facet joint replacement device; or it least it was in 2021. The trial is out of the Cayman Islands (location stayed with me because Regenexx practices there as well). I can't remember the details but that's hopefully enough keywords to find it on an internet search.

PRP inside the disk isn't going to help much as the disk interior isn't vascularized in that fashion. Stem cell injections and stem cell-like procedures have had some success inside the disk. There's also the idea of PRP or similar all around the disk and surrounding tissue to stabilize and halt further degeneration. Laura and I are both pursuing that for c-spine and I'll be pursuing it for lumbar after a bout of idiocy picking up a heavy weight a few days ago has left me with lower back pain

From the lumbar perspective - the ESP to me is the most superior design out there, by far. I don't care for the M6 for it's mesh loop that seems to be allowing the unconstrained core to escape (in some failures?) and the fact it is an unconstrained device that won't significantly limit twisting... And for the damage the 'blade' at the top and bottom of the disc will do to your vertebrae...

I could go on about other discs.

The CP-ESP I don't quite feel as strongly about but still believe it is likely the best out there. I just wouldn't bet my life on it.

The person who had the revision is Cheryl. Last I heard she was doing well.

BTW - the whole reason for choosing an ADR - and importantly IMHO a constrained ADR... Is to reduce likelihood of adjacent segment disease and specifically wear and pain on neighboring facet joints.

My symptoms were FAR less severe than some here, but in the end I'm glad I had both my lumbar and neck done... with ADR's... instead of waiting until it got really bad and then fusion would be a more likely outcome.

I wish you luck in trying to get better.

I had c5-c6 fusion reversal to cp-esp, the doctor who made my fusion didn't clean well my bone spurs and my cage was not well placed/chosen.. so I decided to revise and to try adr by the way.

I am still in pain cause my spinal cord and nerves were damaged by my former giant hernia due to an accident, also an adr will not be 100% as a natural disk so you can expect discomfort.

I think I am better with the change though.

ESP and M6 models are the most used elastomeric adr in europe (and axiomed in usa), but recent studies show that M6 causes debris and probably osteolysis in long term.. as well as its design can provoke core failures.

Anyway any decision in this field is very personal, even "specialist" doctors cannot take this kind of decision for you. It really sucks cause sometimes you feel very alone and misguided when you have a problem like this..