CIDP and surgery
AnonymousMay 14, 2008 at 8:38 pm
My son is 19 years old and has had CIDP for about 10years. He has extensive nerve damage to both his hands and feet. He wears AFO braces which allow him to walk for long distances but over the years his feet have begun to roll out and turn in causing pressure sores and callouses on his left foot. his Orthopedic doctor did a gait study and analysis and is suggesting surgery to fuse the bone on the top/side of the left foot and a tendon transfer also to stabilize the foot and allow him to walk short distances without his braces and to be able to wear the braces comfortably for the rest of his life.
Our concern is whether or not his foot will return to at least the present strength after the surgery. Due to the nature of CIDP we are just wondering if his nerves arent’ sending many signals to the muscles to stimulate them if they will be able to recover after the surgery or will he worse off.
Both his neurologist and orthopedic doctors seem to think that Brett’s present level of strength can not be improved upon by the surgery but at the same time they don’t think that his feet will be worse off either.
has anyone out there had any similar surgery while also having CIDP> If so what were the results? As we all know there are no guarantees with surgery but I just want to go into this with all the information possible.
I would appreciate any input that you may have.
Also, he is seeing a chriopracter for another condition and we were wondering if any of you have had ultrasound treatments while having CIDP and if so were there any complications?
Thanks so much.,
AnonymousMay 16, 2008 at 3:36 am
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.
AnonymousMay 16, 2008 at 7:27 am
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.
AnonymousMay 16, 2008 at 9:07 am
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!
AnonymousMay 16, 2008 at 12:50 pm
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
AnonymousMay 16, 2008 at 7:12 pm
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.
AnonymousMay 17, 2008 at 12:44 am
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.
AnonymousMay 20, 2008 at 1:24 am
Thanks so much for all of your input. We are still weighing everything before actually going through with the surgery. The problem is that Brett’s left foot (the one we are wanting to have surgery on) is so severely deformed from weakness and rolling out already that he is in pain everyday that he walks. He is incurring sores and callouses and more and more deformity. The ortho says that what he hopes to fix is the rolling out. By fusing some of the bones on the top of the foot then his foot can no longer roll out therefore there would no longer be pressure on the sides of his braces causing the sores and the callouses would not be so bad either because they are on the outer edge of his foot, also caused by the rolling motion. We just don’t see any other way to stop the pain he is in. I do fear that the surgery itself will cause other complications with his nerves not regenerating in certain areas and with overall weakness. This doctor has done many of these surgeries on kids with Cerebral Palsy and other neuromuscular diseases with good outcomes but CIDP is different in so many ways. Hopefully when we see the doctor a few days before the surgery we will get some more questions answered. If not then we may just have to put it off for awhile. Please keep us in your prayers.
Thanks so much,
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