Not happy with Dr Prokupa. Jim's symptoms returned so quickly after surgery. Surgery was end of Sept. He had an MRI and today Prokupa had no reason as to why Jim is so bad. Almost worst. Said he was done with his part. Suggested we go to a Neurologist that Jim saw for two years while adding new symptoms. Basically scratching his head saying complex case. Said it was probably due to Syringomyelia. Jim has two that apparently did not grow but did not go small like he expected. He is on the internet as a specialist. Yet dismissed Jim today.
Not sure what to think. I am in shock. What do I do, where can I find an approachable Dr that cares. Anne
Thanks for the update, but so sorry to hear so much is going on....
Praying it is not urgent and you get the Dr and care you need...soon. <3
Hi Selma (and all),
I am cancelling the gym - I'll be happy to go back to my old symptoms forget weight. My neurosurgeon found a swollen optic nerve on checkup (the eye that's been hurting me for months and experienced oscillating Scotoma twice last year) so I'm seeing a neuro ophtamologist next and will fill you in... I'm not a surgery candidate but if the eye is from compression (I think I am slightly more herniated on left eye side) then saving my eye is priority. My neurosurg is retired in terms of operating so I gt get referred to Dr. Macdonald at St Mikes as his resume impressed me. Supposedly end of the year wait time :O. This flare is so chronic that I am not sure how things will turn out for me lol... Maybe urgent... Ttys :)
Hi and thank you for the update.....and Congratulations on the Wedding!!!
There is info on Chiari and pregnancy...google the name Diane Mueller, she is a nurse and works with Dr Oro and they have co-written books and one she has out is on Chiari and pregnancy.....
I would listen to your body and cut back on the gym as you already noted you are heading toward more pain.....that is the bodies way of saying it is not ready for all that....
It is possible for one side of your body to be affected...my Dr explained that you can have more obstruction on one side so it affects one side.....
I always seem to have more issues on my left....
Hi Selma,
After a year break from the gym, I was very hopeful. I also barely touch booze now and my migraines literally are extinct due to that alone (I act also stopped dying hair, those two were top triggers for a decade lol)... However I piled on some weight and am back on track, and so is the neck pain and that itchy back of skull feel inside the head from flow issues I bet.
I also got married last summer and keep googling childbirth options for Chiarians. I do use my voice a lot at work and it does give me Ice pick back of head pain. I'm being stubborn and using leg machines as high as 60lb... I have to get into swimming instead or I'm setting myself up for hell.
My left eye pressure seems more prominent too... Its the gym. Unbelievable. I wish there was an easy way to check pressure without spinal tap but I still don't understand how it's only felt behind my one eye :O
My thoughts are always with you you dedicated sweet lady. The chiari.ca news are great :)
Hi Missyorkie...
Are you in Kingston Ontario by chance?