Behcet's Syndrome Society
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Back Surgery?

has anyone had any sort of back surgery? I am looking at lower back surgery to correct the depletion of cartilage and osteoporosis so its mostly bone on bone, two calcified knots on 2 dics and 3 herniated discs that have been there for about 3 years and i had broken the tailbone/lower vertabrae when i was 15 and never had it fixed. Obviously on the remicade and prednisone I will be looking at a risk of infection and so on. I have heard mostly bad stories of people getting back surgery and bad recoveries and a desire wishing they never got it. Just curious. I know i wish i never had to get my ankle surgery because it did not heal how they were expecting. If my back were to heal that way it would be a lot worse.

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I had lumbar disc surgery last year for one herniated disc. It left me with "failed back surgery" and adhesive arachnoiditis. It ruined my back, my body, and my life. It caused a severe Behcet's flair that travelled up my spinal cord to my brain. I now have loss of bowel and bladder function, weak arms, loss of sensation in my face, and tachycardia. My back pain is much much worse and now includes arachnoiditis, burning pain in both my legs, and my arms And hands burn too. The disc immediately reherniated within the first post op week, so now I have bone on bone, too. I've been in bed since surgery, I can only sit or stand for an hour at a time. I am now disabled, unable to work, lost my job.

I have found nothing in the literature on Behcet's and back surgery, but one Ortho specialist told me he and a few of his "chairman level" university colleagues had each seen one like me before, in patient's with vasculitis...

In non Behcet's patients, failed back surgery is estimated to occur 40-50% of the time! It's a scandal. Behcet's patients are much more likely to have complications with ANY type of surgery.

Back pain is a horrible thing to live with, and I recommend you live with it, if you can. Pursue other methods of pain control first: see a pain specialist for pain meds like antidepressants or gabapentin, try low dose naltrexone, and mindfullness mediatation. But don't let them touch your injections, no surgery. I am filled with regrets. I ruined my life the day I let them touch me. The surgeon said what happened to me was impossible from his surgery, and he was no help whatsover in getting me the urgent care I needed. My nightmare continues every morning when I open my eyes. There is nothing anyone can do for my scarred spinal nerves that have lost normal function and instead send pain signals to my brain. Everything burns, now, instead of just my back.

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Thank you for responding. I have had so many mixed opinions and I am on pain management. I waited till the last moment and couldn't take it anymore. Now, the amount of pain medication is a little crazy. I am at least not in misery and that is also a big reason I am hesitant to allow them to saw into my spine. Had to have 5 ankle surgeries due to one break and then blood clots and rejection of the plates. It still hurts and I can feel all the holes in the bone. Never healed. Damn prednisone. Thanks again.


I had back surgery for a herniated disc about 15 years ago and it cured me completely and I had no further pain apart from some minor adhesions after the op which was cured by a bit of back massage. As I only had one herniated disc it's hard to say if it would have gone so well had I had complications. All I can say is that it turned my life around as I was out of pain and able to do all I wanted to do again. I often wondered if there was a connection with this kind of problem and Behcet's as there was no apparent physical cause for my disc problems and I was only in my forties when it happened.

I hope that things go well for you of you decide to go for the operation. I would say to go for the operation as the prospect of living with back-pain for the rest of your life is not a good one.

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I am sure your surgeon knows exactly what the risks are for you, because of your Behcets. Hopefully he would have had a case meeting with your lead consultants and they would have come to the same decision.

If it is of any consequence, I have been refused surgery to remove two huge ovarian cysts because my lead consultant (a vascular specialist) has spoken to my gynaecologist about the risks.

You must discuss your fears with your orthopaedic surgeon.

Good luck in what ever you decide. Back surgery is always a gritty discussion subject.


Definitely am nervous. He is all about the surgery. I'm not too thrilled and I'm meeting with two more different back specialist to make sure that they all agree on the MRI. If there is any doubt it's not happening.


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