AnonymousJuly 15, 2011 at 7:16 pm
Back when I was experiencing back pain my primary doc ordered xrays and mri’s. His recommendation at that time was for me to have back surgery. I have spinal stenosis and arthritis in my lower lumbar area. I got a second opinion and that surgeon referred me to a Neurologist, believing that there was something more at hand. That’s when I was first diagnosed with CIDP. My Neurologist told me at that time that many people have surgery with little or no improvement in their condition and that usually they were misdiagnosed. Now that the IVIG treatments have proven ineffective for me, my Neurologist is now reconsidering back surgery. Has anyone else experienced a similar diagnosis?
AnonymousJuly 15, 2011 at 7:54 pm
I know of a number of people who had unsuccessful (sometimes multiple) spinal surgeries who turned out to have CIDP. Get at least two opinions before even considering surgery. In the meantime, please read “Healing Back Pain” and/or “The Mind-Body Connection”, by Dr. John Sarno. You can find them cheap on Amazon.com. Best of luck.
AnonymousJuly 16, 2011 at 12:37 am
IVIg is not the only treatment for CIDP. Steroids such as prednisone and plasma exchange by plasmapheresis are also effective treatments, although not in everybody. I would encourage your doctor to try those first before moving on to back surgery.
Godspeed in finding a better treatment,
AnonymousJuly 18, 2011 at 9:14 pm
I’ve had numerous xrays of my back (it was first thought that my spinal stenosis was the primary cause of my nerve problems), I’ve had 2 MRI’s, 3 EMG’s, 1 Spinal Tap, tons of bloodwork. I started my quest in Dec 09, was finally diagnosed in Sept 2010, didn’t start IVIG treatments until Nov 2010.In April of 2011 I stopped treatments.
AnonymousJuly 27, 2011 at 2:45 am
I have CIDP, and have had it for a long time. I originally thought my problem was my back. Well, I had both a bad back and a peripheral neuropathy. After a lengthy period of diagnosis, it was determined I had CIDP. But, I also had structural back problems. I had bone spurs, really bad narrowing around the spinal canal and that contributed to my overall pain and problems. It also turned out that my neck had similar disc, bone spur, and other problems.
Bottom line is that I had a disc laminectomy where the neurosurgeon trimmed back some of the ruptured disc to relieve pressure, removed a bone spur and cleaned up the whole area. I was fortunate and healed quickly. Two years later my neck problems worsened and I required a fusion at c6-c7. I had the same neurosurgeon. His work was impeccable, I healed quickly and got quite a bit of pain relief plus increased range of motion.
I did experience some discomfort right after surgery. I don’t know why, but I lost feeling in my legs after both surgeries. In each case feeling returned after a day,but it was surprising, scary, and uncomfortable. It felt like I had two stumps from my thighs down.
Each one of us will need to make decisions all the rest of our lives due to this cussed illness. Both these surgeries worked out for me without any other effects long term. I have heard from others who did not fare as well. If you need the surgery, get it. Back or neck surgery should not affect CIDP, other than the stress of the surgery.
Good luck with your decision. e-mail me if I can be of further help.
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