I've had a horrible headache for about 24 hours. Unable to get sleep last night, muscles in the back of my neck are tight, a lot of pressure and pain deeper in the back of my head. Having a bad earache too combined with other aches and pains that are related to CM. It's been 7 months since my surgery. Currently, my PCP will not see me for regular checkups for CM. I can't see my neurosurgeon again unless I need another surgery, and I just got denied to see a neurologist I have been waiting to see. I have health insurance, and am willing to try anything out there. Anyways, I have tried everything for pain...hot shower, tea, massage, ice pack, heat pack, etc. My doctors tell me to go the the ER every time I'm in this much pain, but I've been there 3 times in the past month and although the medicine they give me works for a while, I'm getting tired of visiting. Any suggestions as to what I should do to aid the pain or if I should go back to ER and also ask about a new neurologist or someone they could point me to?
The neurologist denied me because he can't take on any new patients. Although I had top priority over everyone when my doctors wrote the referral, the earliest he can see me is September of 2015. I am trying to get a new neurologist/neurosurgeon right now, but I don't have a doctor to refer me. The only way I can get referrals right now is if I go to the ER, which is frustrating.
I'm doing physiotherapy right now ... mostly neck and upper back. He is very gentle and makes sure I feel okay afterwards before he lets me leave just incase he tweaked something. So far I get relief that day.. but the pain comes back... I see him twice a week... and he hopes that things will improve before Christmas but if it doesn't he might look at more intensive therapies like ultrasound and laser treatments. I've also been told to try massage therapy to help work out the tightness... I haven't tried that yet... maybe if physio doesn't work.
Shelby, I think you should see a new NS, but one that specialuzes in Chiari, Ehlers Danlos Syndrome and the other conditions that come along with Chiari. Have you looked into EDS/Hypermobility syndrome? Google the Brighton Critera and Beighton criteria to get an idea of how it is disgnosed. People with EDS can develop cranial cervical instability, the symptoms mimic Chiari and often get worse after a decompression.
I know you are not new to this, but I’m going to attach an old post just in case it hits on something new for you. Pain management is tough, but this routine helped me… Higher doses daily Vitamin D3, magnesium supplements, vit Bs, arnica gel to neck and head, and a cervical collar (you can start out with a soft collar from drug store) this keeps the flexion and extension of neck to a minimum- if you have cranial cervical instability this should help with symptoms.
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
I am glad you found us,
Jenn