Am looking for folks who had lumbar fusion and suffer from autoimmune disease as well

  • Thread starter Thread starter mamagoose
  • Start date Start date
M

mamagoose

Guest
Thanks agan for your input! As I said earlier I have a pre op appointment with my surgeon and hopefully he'll have answers to all these questions. Still, one most unsettling questions that still remains though is : As I have lived with several chronic autoimmune conditions for over 10 years, I wonder how this will play into my recovery. I was hoping that there might be someone out there that ,in additon to the mechanical/anatomical issues of the spine(unstable spine, spondy, grade 2 due to teenage gymnatics) also suffers from additional condiitons...i.e. Lupus, Rheumotoid, Psoriatic arthritis) I am curious to know if the fusion was successful and if their recovery took longer, or no difference. Seems like a thesis paper in the making, huh?

I so appreciate the time the folks on this board take to respond and provide encouragemnet and feedback. I am really starting to get fearful as the day draws closer.
 
Maybe you could post on the autoimmune disease board and inquire if anyone there has had fusion. You aren't getting any response here!
 
I have had 2 fusions and I have lived with chronic auto-immune disorders for many years, as well. When I went for my 1st fusion (L4-5), I asked my surgeon if I was at any addnl. risk or if he knew if this would make me less likly to fuse. He originally said that he did not know of anyone who had, had this problem and could not say for sure one way or another. But that he did not think it would make a difference and that he would think that out of all the patients that he had worked on, that he would have had someone that had AI disorders and would know if they did not fuse well. Well, I healled a lot slower that most people. He was always so suprised when I'd come in and I was still using my walker or cane...when most would be walking on their own. I never walked on my own, for more than 3 miles, which was at 6 months post-op. He said that most of his patients get up o 5 miles by 3-4 mo. period. So, my post-op pain was three times as long as most as was my healing.

From just post op until 3 months, I was getting better, just slowly. Then, all of a sudden, I began to get worse and it cont. to worsen. By 9 mo. there still was no fusion on the films and I was back to using my walker. By 20 mo. post op, I had ruptured the disc above the old area, so we went back in, to re-du L4-5 and to also fuse L3-4. Becasue we know how slowly I healed earlier, I was given a bone stimulator to use, immediately afterwarRAB. Still no fusion on that one. I can not say if any of this was because of my AI problems or not. I personally think that it at least had to do with my healing time. Whether it affected the actual fusion...who knows. My surgeon said that there just are no real studies out there, to test this scenario. Even when I had the SCS implanted, I was suppose to be in the hospital for 1-3 days and I was there for 7 days and then a rehab center. (My 2nd fusion, I was hospitalized for 1.5 weeks, and then was put into a rehab cener for a month....people seem to heel in every surgery, much faster and easier than I did.)

I did not want to tell you all of that, but I decided that I would want to know, if it were me. You can let your Dr. know about my experience and ask his opinion.

Best of luck and keep us posted.

Lorie:angel:
 
Hi! I have an auto immune disease: ankylosing spondylitis (similar to rheumatoid arthritis, but is arthritis in the spine). I have not had fusion surgery, but have had many lurabar rhizotomies (RFA), as well as 4 knee surgeries. What I have noticed is that I have a longer recovery time. The other problem with my knee surgeries, is that I formed a lot more scar tissue than most people would. I was told by my doctor that this sometimes happens to people with auto immune diseases. Kind of like the body is "over doing" the healing. Similar to how auto immune diseases act in general. I had to have extra knee surgeries just to remove scar tissue. My doctors did a "prednisone burst" immediately following surgery last time to help the situation. I think it did help, as my last knee surgeries had a shorter recovery time than the first ones. Hope that helps! Sending good thoughts your way-Kera4
 
Hi,

I have not had a fusion, but I did have multi-level laminectomies on my lurabar spine, and I also have Lupus. My lupus was pretty much controlled with Plaquenil, though...so I did not have too much of a problem recouperating from surgery. I also was not taking any steroiRAB right before surgery. My main problem after surgery was the great fatigue..it took alot more time to get over the fatigue and tiredness. On average, I should have been back to work 6 to 8 weeks after, but I needed 10 weeks. So it just took me a little longer, but I did not have a flare up or anything after surgery. Since surgery, though..I do have alot of scar tissue build up, though I don't know if it has anything to do with the lupus, but it's been causing me problems.

Since surgery, I've also had to have several lurabar ESI's and a nerve block due to scar tissue problems and reherniations, etc. These work great for my pain, however..once the steroiRAB wear off, then I get some horrible flares!!
It's the same as everything I've lowered my doses of oral prednisone in the past for lupus flares. All of a sudden everythign comes back with a vengeance. I will suddenly feel like I'm hit by a freight train. I get joint pains all over the place, nerve pains everywhere, even in places i'd never had them before; unbelievable, widespread muscle spasms, constant migraines, hives, massive fatigue, low grade fever, all sorts of symptoms. IT seems to take me several weeks (sometimes a few months) for the flare to subside. I know lupus does not involve the spine, but even my entire spine (including my neck area) goes into major flare ups of pain and stiffness. Last summer, after a nerve block, I got sudden eye problems, grittiness, major tearing, extremely light sensitive, the migraines were happening constantly...i got diagnosed with dry eye syndrome. I also developed some new rashes on the outsides of both elbows and around my ankles, still no clue what that was all about. Eventually the rashes went away and I am taking lubricating eye drops, which is even helping my migraines. SteroiRAB help me greatly with all my pains & symptoms...but I sooo dread when they wear off because it always enRAB with weeks of flares with pain and all sorts of symptoms.
 
Thak you so much for your post. It is very informative and answers some questions that I have had for my doctors. I too have had the longer recoveries with my RF procedures as well as the injections and blocks. I have just assumed it had to do with the AI problem...I am now even more sure of it.

Thanks again,
Lorie:angel:
 
I'm wondering if you've had the surgery by now. I've never responded to a chat site before, but I certainly feel like my experiences qualify. I had lurabar fusion of L5-S1 in Aug 05. I have since been diagnosed with Ankylosing Spondylitis. It took 1 1/2 years to recover from the surgery. I haven't worked since. I really miss my job. I haven't experienced any relief from the fusion, am actually worse. Hard to say what is A.S. pain and what is mechanical pain. My spinal specialist (he did not do the surgery) says that my discogram from before the surgery was negative. I take that to mean the surgery wasn't necessary. This has been a frustrating 3 years. I continue to search for ways to relieve the pain. I am trying all sorts of spinal injections. I'm on Methotrexate for the A.S., but it doesn't help for long after each increase of the dosage. I continue to be hopeful, at least for some relief from A.S. pain. I've had other surgeries that I was sort of slow to recover from, pain-wise, but nothing like that fusion.
 
Interesting...I have Ankylosing Spondylitis, and have similar experiences after my spinal injections. Always a flare-up (am in one now for a nerve-buring procedure--my least favorite procedure to date, not counting the fusion). I don't seem to get much improvement from procedures, but I'm not ready to give up. I have been getting migraines since having a spinal fusion. Also having eye problems recently. Once had iristis, have had a few occasions of eye inlammation,which causes eye spasms, feels just like iritis to me...severe light sensivity, tearing, and a feeling like a migraine around the eye that increases throughout the day. I've never talked to anyone before with similar experiences. Sorry you have them too, but nice to know I'm not alone.
 
Mamagoose, my bf has an autoimmune disease (maybe several) but he clearly has celiac disease. He had a 2 level fusion with BMP in 2005 and it failed. We were told it was that his body attacked the BMP. He had a revision in 2006 in which bone was grafted from his pelvis. He did end up with staph infection a week later and had to be operated on again. Eventually he did fuse BUT he is still has alot of pain and is on a lot of meRAB. He had a total hip replacement in July and ended with other complications. The doctor who helps him now said he would have put off the hip replacement because of the autoimmune disease. He's been on a gluten free diet and he would have wanted his body to become stronger before having more surgery. So basically I question your doctors as much as you can before you have surgery because the autoimmune diseases can affect your healing. We were told he would be okay but at the time we had the wrong doctors.

Good luck and feel better.
Lynne
 
Back
Top