Advice please

    • May 2, 2017 at 10:47 am

      Hi I have the AMSAN variant of GBS. My GBS struck in May 2014 and initially I was diagnosised with cervical stenosis and sent to another hospital for immediate surgery. The 2nd hospital found the GBS and I did not have suegery. Now my new neurologist, who’s specialty is neuromuscular wants a 3rd opinion from a new neurosurgeon about surgery. My previous neuro strongly believed that my cervical stenosis is causing some of my balance and numbness issues. He had referred me to two different neurosurgeons and they both said I was not a canidate for surgery yet (he disagreed with both of them). My new neuro has ordered a new MRI and the 3rd opinion. He is concerned that if left untreated for too long I may not recover my reflexes in arms & legs, numbness in fingertips and legs/feet (he was very informed about GBS and this Foundation). He stated that neurosurgeons may have been concerned about ta GBS flare aftger neck surgery. So has anyone undergone this type of surgery post GBS?

    • GH
      May 2, 2017 at 11:16 am

      If two neurosurgeons said I was not a candidate for the surgery, I would not want to have it. But I have no experience with stenosis.

    • May 2, 2017 at 12:30 pm

      The two previous neuros spent 5 mins with me and were going off an MRI done in 2015. I saw them both in 2016. I really feel they did not do a thorough exam of me to be honest

    • May 2, 2017 at 3:14 pm

      Are you being treated at a Center of Excellence? If none are close to you, perhaps forum members can give you some Neurologist recommendations if we knew your location.

      Since you may have AMSAN/AMAN this topic thread may be of interest to you:

    • May 30, 2017 at 10:45 am

      Jim-LA I have that forum saved as a favorite lol

    • jk
      June 3, 2017 at 9:32 am

      I have and have had stenosis. In my case, the recommendation for cervical level spinal surgery came years before a diagnosis for CIDP. I did have cervical surgery.

      Following surgery several things happened.

      1. The neurosurgeon stated emphatically, “..the areas where you have trouble have nothing to do with the region I operated on.”

      2. The neurosurgeon had his nurse tell me, “Do not return or attempt to get an appointment without a referral from a neurologist.”

      3. The ensuing nerve conduction (NVC) and muscle testing (EMG) operators all wrote in their reports something such as this- “…cervical radiculopathy, resolving.’ It is my belief they said so based on a bias of knowing about the cervical surgery.

      Well, they were all wrong and he was impolite, at best.

      I. too, would be reluctant to undergo surgery understanding that there is another possible cause of radiculopathy. On, the other hand, if you have nerve root pinching and smashing going on at the levels being considered for surgery I would ask more than one doctor, “show me and get the nerve tests results for that area.”

      No matter the cause, nerve compression and damage left untreated does not bode well for a healthy future.

    • August 15, 2017 at 6:40 am

      What state are you in? Interested in neurologist who is well versed in GBS.
      Good luck and thanks!

    • August 15, 2017 at 1:12 pm

      nairbear62 I am in Hannibal Mo burt by neuro is in Columbia Mo

    • August 1, 2018 at 5:29 pm

      QUESTION: Been CIDP survivor since 1992. Treatment has been regular IVIG through Mediport.

      Last week; through Cystroscopy told I have a golf Ball size Tumor (from appearance it’s Cancer) on the inner lining of my Bladder.

      The will do 2nd Cystroscopy on 8/13/2018 to remove the tumor (hopefully get it all+ not deep into the muscle off my Bladder.
      Next, they inject a Chemo Drug (mitomycin C) into the Bladder.
      After Neuro, saw the Urologist Report, he told my Infusion Company to Postpone my IVIG?
      CONCERN about CIDP WITH CANCER, Chemo Drug with IVIG, on and on.
      Anyone else encounter this?

      Or, am I the only Double Winner. Thanks Folks