I was told that the main things during surgery was that the anesthesiologist watch for blood pressure and heart rate changes. They definitely should know that you have had GBS and if you had problems with autonomic nerves such as affecting the heart and blood pressure or weakness of lung muscles so that you needed a ventilator. I did fine with surgery as well, but I made sure that people knew that if anything went wackey, it was likely because of the GBS and the fact that my system is more sensitive and less tightly regulated than it used to be (also known as normal).
WithHope for a cure of these diseases.
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.
I talked to my ex-wife and she said no way (obtw she works for my neuro). He called me last night and is getting me in for a second opinion today.He informed me that with my immune system I do not need any foreign things in my body. He also said it was irreversable and to cancel my appointment and we would look for other options. He told me he had seen disasters from this kind of surgery. Geeeeeezzzzzzzzzzzz I hate the pain !!! I’m a DA and all I can rely on is you all and my neuro.I would hate to have the surgery and it not work and come out with a vent again. Thanks for all the opinions and responses.
I have/had a very severe case of CIDP & have been put under 3 times since my initial attack with no problems at all. I have also had extensive dental work done without any adverse consequences. But like everything else, I supose we are all different. I wanted an elective surgery done (breast reduction) before my husband retired, but he wouldn’t let me take the chance. I wish I would have now, as Medicare if now my primary. I am too borderline for me to qualify for that now.
Nate has an orthopedic doc that is treating his equinovarus foot deformity. He told us that normally he would have repaired that deformity surgically but he will not take the risk of anesthesia with a post GBS patient.
Anesthesia is known to have a large risk of relapse of your GBS, that being why Nate’s ortho will not put him under.
He has had Nate fitted with an AFO with an ankle hinge to try to straighten nate’s ankle and foot.
He knows it will take a long time to do that but for Nate, it is the only option.
So far nate’s foot is starting to respond some. His heel is almost down now but the other deformities are still mostly the same.
I would discuss the possibility of a relapse with your doctor before entering into any decision.
I have to tell you my back surgery did not go well. I had a complete flare up with the anesthesia and did not respond to anti-reversal anesthesia medications for 5 hours. My onset of GBS was in 1995 and I am one of those Chronic relapsing kinda gals. Surgery for me is something to be avoided at all costs. I ended up with partial paralysis and could not get out of bed again for months. I don’t want to be taken as an alarmist but we must have that face to face discussion with the “gas passer” or knock out Doc.