CIDP and surgery

Vicki,
I have had one surgery that may hare started my CIDP and another that definitely made it worse. Everybody is different but as it stands for me, I’d rather live with this pinched nerve in my shoulder than risk surgery. There are others here who have had surgery but I don’t know if anyone has had that particular surgery.
Julie

Vicki,

I had to have a lumpectomy…it was suppose to be a simple removal of a small suspicious lump. And, it was very tiny. I had it done on Feb 28th and it was not cancer. However, the incision has not healed. It’s a small cut and wont close. I dont understand it and have been back to the surgeon many times….there is no explanation for not healing other than this autoimmune disease making it take longer. It’s absolutely ridiculous. Another dr told me he wouldnt prefer to do a breast reduction on me b/c of the healing issues.

I know this isnt the same thing…but if healing quickly is something you might expect, I’d think again.

good luck

Stacey

Stacey ~ try using a small amount of Vitamin E oil on your incision. Take a capsule and poke the end with a pin then squeeze out a small amount. Try it at least 2x per day. You should see a difference in a few days. Beings it has been so long (3 months!) it may take awhile but will be worth it. Good luck!

Vickie,

In regards to surgery and CIDP,

I had nasal surgery 1999
lumbar laminectomy L4-L5 2002
cervical fusion with disc replacement C6-C7
gall bladder removal 2008

I did not have any problem with surgery as it related to my CIDP. I did consult with anesthesia prior, and my surgeons were aware of my condition prior. Everything turned out fine.

In regards to foot surgery, please dig deply about long term implications. Will this be a short term fix, with a poor long term prognosis?

Personally I saw 2 different neuro’s two orthopedics, and a podiatrist to try to relieve my foot pains. I have six large bone spurs, severe plantar tendon tightening and calcification, poor tendon function on the top of my feet , rapid muscle fatigue, etc. None of the Dr.s would do any surgery on my feet. A couple of them advisaed strongly against it. Generally they all said that any short term gain would be offset by long term problems and loss of function.

I know that each person is different and each situation presents its own solutions. I would only advise caution. Learn as much as you can about the operation and don’t rush into it. Your son’s condition won’t change so fast that you won’t have time to learn and understand.

I know this is a difficult decision for you because you love your son so much, and don’t like to see him in so much pain. I know how much that hurts.

Take care and good luck with your decision

Dick S

Have had one minor surgery after diagnosis. Ended up 6 weeks back to physical therapy. I’m avoiding surgery whenever possible. But as everyone has mentioned, we are all so different in how we react to things.
Good Luck

2 years ago I had a major surgery [mastectomy for cancer], two months later implant surgery [implant for ‘balance’?], last year dental surgery, and recently a biopsy – which I’ve cleared with my neuro each time.
My neuro has said the best time to get such surgery [invasion?] is about 10-14 days after my infusions. I’m on a 4 week cycle so timing this stuff has been interesting.
The way I figure it is that I get the most immediate ‘bang’ for my initial problems and then there is still enough IG to work on any other problems I might have afterwards. I’ve been lucky and not encountered any infections or abnormal reactions. AND I know that the bulk of my infusion is going where it is really needed! Not to the just healing parts of a surgery.
Vickie? As for the kind of surgery your son is to have? I really cannot address that all? The only thing I would fear is how nerves that run down the leg to the foot would be disturbed/injured or damaged during such surgeries. Those nerves we have are soo tiny, and they cause soo much pain. I don’t know about you? But I want what nerves I’ve left to be ‘gold plated’ some time in the future? They cost enough to treat, don’t they? OK maybe platinum. Maybe in neon? I truly hope this helps.

Hi

I have had two surgeries since diagnosis. Both relatively uneventful, however healing took forever! The first incision probably took 3-4 months to heal properly. The anaesthetic and the process itself caused incredible fatigue; and my nervous system really went crazy and I had quite alot of nerve pain. (These procedures were nothing to do with CIDP)

My concern is that your son is quite young. If he starts with such drastic surgery now, you have to wonder what would be down the track…. I would really want to consider your alternatives, if there are any.

Best wishes

Debs