I need a soft voice to say it will be alright

I received a double whammy, not only did I receive my diagnosis the support I thought I had is gone.

Hi Marty,

I'm also new to this group only just coming to terms with my situation. However does anybody have any history or knowledge of acquired ataxia from hydrocephalus? I had severe headaches with a build up of CSF a VP Strata shunt was inserted but did not drain (neurosurgeon said it was underperforming?) I had no ataxia symptoms subsequent to this operation for 3 months. I then had a shunt revision and woke up with right vocal chord paresis, right eye turned in, weakness in my right shoulder, hip and leg!!! I'm now going thru some therapies....I can now, after 3 months stand on my own for 5 minutes at a time, take steps with a frame as long as somebody is with me (supporting from behind)....PEGG feeding is really getting me down...I can swallow ok but the vocal chord paresis (right side bowed) so my airway is unprotected......has anybody ever got better over time and lots of physio....I really want to walk unaided again and get out of this wheelchair!!!! :-)

Hi Jayne - I have no idea what it was called what I had, but I had very similar issues, except these things affected my left side.

They said that my brain was swelling so they had to shunt it to keep it smaller than the skull.

I had an AVM (arterio venous malformation) / brain bleed issue with brain surgery and a 3-week coma which I just attributed to my initial full-body, turned left-side turned partial left, paralysis.

After my 3-week coma, I awoke to being fully paralyzed - my diagnosis was locked-in syndrome where I needed to communicate by blinking my eyes and then progressed to pointing to letters on a communication board to spell out words. After some time and a lot of working on re-gaining voice and general movement (including range-of-motion for expanding arm movement limitations), I have been peg-tubeless for a good four years.

Every single thing that I can do now that I wasn’t able to do post-coma took a lot of time, and I’m still working on improving things; though I’m not expecting to be or move how I did pre-coma.

It was explained to me that our recovery is more like a marathon than like a sprint.

Hang in there, and take one step at a time if necessary.