Hi all, when I look at symptoms of syringomyelia - I have some but my neurosurgeon did a needle prick test on my fingers and felt I didn’t have a cyst. I have some weird symptoms that he doesn’t think is connected to Chiari - so just wondering - your thoughts ?
Just wondering which symptoms did the neurosurgeon think are not connected to the Chiari?
My neurosurgeon has never said anything other than occipital headaches are connected to chiari in my case. HIs only concern was a blockage in an aqueduct and he punctured a hole in the 3rd ventricle (ETV) because of hydrocephalus and if I had a complete blockage it would kill me.
I reached out to him a few times after my EVT (Jan 2017) because of swollen face, eyes, terrible terrible vertigo - last bout couldn’t walk and vomiting,
numbing fingers, hands sometimes going up my forearm, numbing on my toes and ball of my right foot. These are all just during the early mornings, either when I’m sleeping or laying in bed and it can be both hands and arms. It’s different than when someones hand or fingers fall asleep because the are sleeping on that side. Now it’s the big toe tingling and feeling numb on my left foot - and I feel this during the day.
I have a tingling nervous thing across my shoulders that never goes away. The worst thing is this terrible jolt that I feel when I’m falling asleep. It’s not a normal hypnagogic jerk - mine are coming from just at the base of my head. And I hear a snap. Also I have this vibration thing - count to 70 fast. This is also inside my head when I’m falling asleep - it can happen repeatedly. I feel that there is some eye movement and vertigo when this happens. My pulse is the same and it’s not noticed in any body movements when this happens. I have ringing in my ears - and the frequency changes - sometimes super high pitch and sometimes it sounds like broken fan. I can also have pain in my ears - checked many times - doc didn’t find an infection. Also one ear never both at the same time feels like a curtain has fallen in my ear - kinda like when you swim and water has blocked up the ear canal.
Any kind of head movement looking up or bending over can trigger dizziness and a terrible pain at the base of my neck. I used to love a full complete workout of Classical Stretch, but some of the movements just don’t feel right - so I’ve adjusted this. Also I’m very careful how I hold my neck now. I don’t dare let my chin stick out for long.
An xray found a curvature in my neck and mild osteophytic and mild narrowing at C5-6 C6-7.
After my surgery - when I was being released - my surgeon said I’m good to go - even ski if I like after a couple of weeks. Wouldn’t that be lovely! Being under a surgeons care is a first for me - he did a great job and has been kind to email me back with my concerns and even do another MRI - Feb 2018. Chiari hasn’t changed but the ventricles and hydrocephalus have. So to him - surgery was a success.
1 Like
Syringomyelia, as I understand based on what my Neurosurgeon explained to me when going over my MRI in 2016, is when the CSF is all but blocked and the fluid then forces it’s way through almost like a drip and forms pools in pockets down spinal column. The only way she could determine the presence of Syrinx was through an MRI. I had 2 of them appear on my MRI. The nerve damage created in my spine is life long, but has improved some since they flattened out after a very successful surgery 18 mos ago. Mine were extreme numbness in my arms and legs and I wanted someone to break my spine to relieve this intense pressure I felt in 2 places. I also felt like my head was a champagne cork under extreme pressure. Not a headache but this intense vice grip pressure. I had extreme light sensitivity and my eyes got super bulged out. I had an MRI today and my CSF flow is normal and the durapatch healed beautifully and everything is all tucked into place still. My syrinx have flattened out. One is no longer visible and the other is very small compared to what it once was. All my symptoms for the most part are gone. Every once in a while I get numbness and sometimes light headed if I bend over for too long. I had physical therapy after surgery which was super helpful in rebuilding my neck muscles since decompression surgery give you severe whiplash. I have degenerative disc disease in my neck but so far no issues. I had a pinched nerve a while back that gave me some of the symptoms you are describing with regard to the numbness. I have horrible ringing in one ear since surgery, but have been told it is related to the 2 bouts of Meningitis I had during recovery. That is when the ringing showed up. My ringing is like having a seashell up against my ear all the time. There is hope it will eventually go away. Glad your Dr. is so available for you!
1 Like
I also had and have the ringing in the ears my Dr said he did not think it was due to my Chiari. The other symptoms of hands numb tingling happened to me the surgery did help with that but I have noticed it has started again. I also can’t bend over or even turning my head to try to see behind hurts and triggers dizziness.
Thanks for sharing. It puts my symptoms into perspective. 