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  #1  
Old 06-24-2022, 01:21 PM
Suzanne1234 Suzanne1234 is offline
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Join Date: Jun 2022
Posts: 13
Default 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.
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  #2  
Old 06-24-2022, 06:19 PM
elorpar elorpar is offline
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Join Date: Apr 2022
Posts: 28
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Try Bertagnoli, he is the best of the best.
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  #3  
Old 06-24-2022, 09:41 PM
Suzanne1234 Suzanne1234 is offline
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Join Date: Jun 2022
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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
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  #4  
Old 06-25-2022, 09:49 AM
elorpar elorpar is offline
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Join Date: Apr 2022
Posts: 28
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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.
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  #5  
Old 06-25-2022, 04:39 PM
Suzanne1234 Suzanne1234 is offline
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Thanks for saying that.
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  #6  
Old 06-26-2022, 07:43 PM
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Harrison Harrison is offline
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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!
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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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  #7  
Old 06-28-2022, 07:28 AM
Suzanne1234 Suzanne1234 is offline
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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.
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  #8  
Old 06-28-2022, 08:29 AM
annapurna annapurna is offline
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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.
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Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
General joint hypermobility

Jim - minor C5-6 instability and facet damage, currently using regenerative medicine to address

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #9  
Old 06-28-2022, 02:48 PM
Suzanne1234 Suzanne1234 is offline
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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
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  #10  
Old 06-28-2022, 02:53 PM
Suzanne1234 Suzanne1234 is offline
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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.
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