22 May 2020 Update.
Due to the ongoing corona virus situation my surgeon can't operate or hold any clinics and the hospital can't set a date for opening as the hospital is being used for Covid 19 patients.
This is really tough for me right now because i am deteriorating and the pain is worsening . Im feeling really unwell most days.
As soon as i get a date for surgery i will post on my facebook page @HelpingJemma
Stay Safe everyone and Please STAY HOME!!!! and remember social distancing to help get cases down so i can get the surgery i so desperately need.
04 April 2020 Update.
I was due to have surgery in May however due the Corona virus situation it has been re booked for June (depending on funds and whether its safe for me to have surgery) it could be re booked again. My heart rate is still causing problems dropping to 30 bpm or going the other way to 170+ ,when it drops i get tight chest, dizzyness and sweaty
My neurosurgeon is hoping the surgery to take pressure off my brainstem will sort that out and some of the other neurological /autonomic dysfunction, ease get rid of my head pressure pain.
It was quite a blow to have to change dates again because it feels like it will never happen. I know it will eventually but its still fustrating. Anyway it is what it is :( . I will be having surgery as soon as we can to prevent further damage to my brain stem.
Stay Safe everyone and Please STAY HOME!!!!
05 March 2020 Update.
Had some fantastic news (in a way). A private neurosurgeon in the UK can do my operation! Possibly in May! we only need to raise another £15,000.
The scans showed that the instability in the top of my neck has worsened a lot. He was quite shocked at how clear it was to see how my brainstem compression and instability has got worse because of how far my skull is sliding forwards and back off my spine.
A CTv scan of my head and neck arteries/vessels showed My Right Jugular vein is compressed blocking 50% of blood flow to my brain. Thankfully at the moment I have enough flow to leave that alone as it would mean another very risky operation.
He is planning to fuse my skull on to my spine with a plate and rods and screws down to C2 (possibly more). I have decided to go with him because a smaller fusion means I keep a bit of movement in my neck. It is a hard decision because there is a chance my neck could become more unstable under the fusion but he is hopeful with post op physio the rest of my neck could strengthen without needing another op.