Newbie here,
I have yet to have my first appointment with the neurologist, I have been pushing it back every month because I don't have insurance, and definitely don't have the money for the appointment just yet..
I found out I had Chiari after months of excruciating headaches that the doctors thought we're migraines. Then the blurry vision began to get worse, and more frequent. Then the blurry vision became complete black-outs. I couldn't drive, read, nothing.. Went back to my doctor, and they discovered that both of my eyes had Papilledema. That is when the MRI was done, and the Chiari was discovered.
That was in November of 2014. The head, and eye symptoms aren't as extreme as they we're.
The last few weeks I have been suffering with neck pain, back pain (Radiates down my spine) , shooting pains in my hand, legs, and shoulders.. and random numbness in my arms and legs..
Lately I have been doing more manual labor than usual, so I really just chalked it up to being out of shape. I didn't realize that all of this could be related to the Chiari..
I remember when I was in labor with my daughter.. I was a few minutes away from pushing and the epidural wore off.. I remember telling my mother it felt like someone was snapping my spine in half..
This remind me of that..
Anyone have the same symptoms?
Is there anything out there that might help me deal for another month?
Rose, I’m sorry you are in pain, and glad you got a diagnosis for what has been going on with you. Please know you are not alone, we are all in the basket here and know what it’s like (it sucks). I’m going to paste an older post here for you to read …,
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.
Dysautonomia- Dinet.org
Tethered cord syndrome
Sleep apnea- dangerous, especially if Cranio cervical instability is involved
A few of ys have found that taking higher doses of D3, magnesium, and Bs have helped with the pain. Also, Arnical gel to the neck and back of the head can ease the pain a bit too.
I am glad you found us,
Jenn
Thank you. I feel very thankful to have found this site. It is already helping so much!