surgery in my future

    • Anonymous
      November 15, 2010 at 8:15 pm

      Had GBS now have CIDP. Use a walker, cane and forearm cutches. Also have a manual wheelchair. The problem is my left foot and hip. Had foot drop in both feet and had achilles tendon release. Dr said my left foot dropped and twisted when he did the release. was not walking at time so he didnt do anything but said i would eventually need additional surgery to fix it. Well i have been walking for over a year and now i am on the verge of a stress fracture and am in agony all the time. seems i walk on the outside of my left foot. i have a brace on that foot as well. He is going to do a tendon transfer from inside to outside to pull foot into the correct position then break my heel.(not exectly sure what he is going to do with my heel but it is twisted as well.) he says my hip hurts becuse of the way i invert my foot and is afraid that it will damage my hip as well if we dont do something. I realyy trust this doctor he is a pediatric surgeon but specializes in foot drop tthat is why i see him. Went to another dr for the problem and he was like we have to fuse your ankle but you wont be able to walk on it ever. I was like what would be the point of that at least now i can walk just with pain. The down side to the surgery is i have to be completly off my feet for 6 weeks. Baxck to a wheelchair and no driving. that will suck. I get IVIg 2 days a week every week so my dad will have to be my driver. I also work 10 hours a week. The doctor says it will hurt very badly but that what he said about my other surgery and he was right but i had pain meds. The difference is i had both feet done at the same time and was in a facility afterwards. I will be home with my parents monitoring the meds. I am not sure i will be able to get the pain meds every four hours. I will have the doctor explain that even if i am not in pain give meds so the pain will not come back. It is awful to break the pain cycle if you let the pain return. He sid i will be able to get rid of the brace afterward. I have mixed emotions about that. right now it and the crutches are the only sign that something is wrong with me. People assume the crutches are because of the brace. they always ask what is wrong did i break my leg. I know i dont owe an explanation to anyone but…..
      thanks for allowing me to get this out.

    • Anonymous
      November 16, 2010 at 8:40 pm

      I’d try to get second, third and fourth opinions before I did something so drastic. [I know I have done so!] Yes, it could relieve your pain? BUT, IT could leave you far less mobile. I am assuming that mobility IS what you want to preserve to most degrees.
      As one who has seen over 9 neuros in my ‘diagnostic’ processes [and sub sequent treatments]… I agree with those who’ve met my best research estimations for WHAT I’ve been thru. Interestingly enough, some of these neuro’s I’d encountered I suspect, re-thought what they’d always thought about CIDP after they met ME!
      If I were in your shoes [if you can wear them?], I would truly get other opinons as to how and where to go and what to do…
      I have to admit, that I was truly lucky from the time I’d changed from my very first neuro to the SECOND! Then? I got diagnosed and treated fairly well.
      Follow your instincts on this, as to what seems ‘right or wrong’. That is crucial as to how well you get diagnosed and then treated!
      Leaving one doc for another? Key words are: ‘We don’t communicate well’. Say no more no less till loong afterwards.
      Me? I’d avoid surgery like a plague? But then, I’ve had 4 biopsies and two major surgeries [for other things] since my diagnosis. Yet? I’d still stall at any ‘biopsies’ or surgeries IF I can help it in other ways.
      Trickier aspect if finding out what all you have that may really need surgery and what might respond to other treatments.
      My heart goes out to you truly, and I understand your delemma. So, go get other opinions that can ease your mind that THIS DOC and THIS surgery are the right things to do NOW!
      I’m almost crying, because I respect that you are hurting. Please let us know what you do and also why. HUGS and HOPE!

    • Anonymous
      November 17, 2010 at 4:59 pm

      I have decided to have the surgery. it will be in january and i will go back to the nursing facility i was at before. At least this time i know it will only be for 6 weeks. I spoke with the home and they are excited to have me back.(sorry that i have to go through surgery) They will make room for me. I know this is the right decision but a big adjustment. Spoke with my coworkers, One lives in the same town as the facility and she said she would visit often I will try to get a phone installed in my room so at least i can chat with those who cant get out to see me. I know this is the right decision. It is a skilled facility and they should be able to administer my IVIG as well. I left a message for dr rao today to make sure.

    • Anonymous
      November 17, 2010 at 5:54 pm

      Sent a private message.

      Which surgery did you choose??

      Good you contacted Dr. Rao–his input may be very important as your surgery may impact the CIDP.