Hi to all
I had hyc at Stony Brook back in 2006. I had tried EVERY DMD out there: copaxone, rebif, beta seron, avonex, IV steroids,LDN you name it, I tried it.
I was rediagnosed with SPMS, four years after initial diagnosis and was desperate for a treatment that made some kind of difference...so...I had seen a news clip about this treatment being offered at Stony Brook, L.I. by Dr. Gladstone( he went to Johns Hopkins, now}. I qualified and was admitted for the treatment. The staff at SB was incredibly professional and friendly and I can't say enough about the incredibly smart, wonderful nursing staff.
I had a subclavian line inserted for med infusion and blood drawing [every 4 hours, at times]. the infusions were given IV on consecutive days and then the side effects hit [like a ton of brick!]
My hair fell out, I was as weak as kitten[that's putting it nicely],no appetite, no mouth sores though,Thank goodness, incontinent of urine. diarrhea, sleeplessness, and so on and so on and so on.
The care I received was PHENOMENAL....THE RN's answered my questions more thoroughly than the MD's[ except for Gladstone who visited EVERY day;even on his day off] the ancillary staff knew their responsibilities and carried them out faithfully.
My stay was about 30 days.
Going home was scary!!!Weakness persisted for weeks,so much so that I needed assistance to walk to the bathroom and take a shower.Any odor made me actually vomit.UHG....I thought 'd never recover.... I did
The out come is difficult for me to asses. The incredible fatigue resolved so did that ever-present feeling of balance loss. However, the stiffness/spasticity in my legs has worsened as the years go by
BUT .....I am convinced that without this treatment, I'D BE IN WHEELCHAIR My prayer for the hyc was that progression slowed until "something better" comes along and now CCSVI !!!!!!! Hopefully this will afford more inclusive, longer lasting relief.
GOOD LUCK if you decide to go this route. Check into the CCSVI treatment, though. You may save yourself alot of grief.