I am 21 and diagnosed early February of this year. what made me go in to the Dr was back in November of last year. I had these severe headaches for a week straight non-stop. I went into my Dr he gave me migraine medication..that dint work. i continued getting these headaches on and off but i brushed it off because i thought it was connected to stress. At the time my mother was going through radiation treatment for her brain tumor (she was diagnosed in August of last year) so i was just overly stressed with school work and taking my mom to her daily radiation appointments oh and also making sure my younger brothers got their home work done and were fed. My life was a mess so like i said i thought it was stress. i did an 8 week follow up with my dr and i told him how they haven't gone away and the medication that he gave me didn't work. He was just going to give me a different medication but given that i had dealt with my mothers brain tumor i was scared and requested an MRI. That is when he found an abnormality in the images and sent them over to the nuero surgeon. who then requested more MRI's and CT scans. Thats when i freaked out because i automatically thought brain tumor. After waiting for a week or 2 for the results i seen the nuero surgeon and he didn't specifically say i had chiari but after all the research i did from what he explained and all my symptoms i connected it all.
I am extremely scared, i dont know how to deal with it all. The headaches i get almost everyday are terrible i am not sure if it is all in my head but since my appointment i feel like my symtoms have gotten worse. or i just notice them more. My neck and back KILLS me any OTC medications dont work. I am just stuck. I go back to my dr to talk about everything even more. Something that really freaked me out was he said i had a Large amount of Cerebral Fluid inside my spinal cord which isnt normal. Does anyone else have that or know about it? They did suggest the surgery which i am looking into. I just need more answers before i make an official decision. Is there anything anyone suggests or have any pointers that have worked for you to deal with the pain? Id like to get all the help and information i could. I feel like i cant talk to anyone because no one understands or try to understand.
The fluid build up in the spinal cord is called a syrinx. Usually with a syrinx surgery is recommended as it can lead to permanent nerve damage. A lot of people on this board have dealt with this and will probably chime in.
Try to seek out a doctor who has treated a lot of chairi patients. I know it’s scary and overwhelming but you’ve come to the right place!
If you want to consider surgery as an option please take the time to find a true Chiari specialist.
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
Ehlers Danlos syndrome- 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, but continue to have the same symptoms or worsening symptoms- a second surgery will be required.
Welcome! We are glad you found us. Good luck finding the RIGHT doctor and getting the treatment that you need. Prayers are heading out for you and your family.
What helped for me was radio therapy rhyzotomy. It blocked my pain completely and I needed no pain meds for 2 years at a time. We cannot keep swallowing all those pain pills as it affects the kidneys causing new problems for us. Some days I would go to my GP and ask him to give me a pain shot. We also cannot do that every day. A rhyzotomy stuns the nerve in the neck that carries the pain message to the brain, therefore it stops relaying the message and you do not feel those migraines. The quality of my life was changed completely by the rhyzotomies.
Jma27,
I’m so sorry that you are going through all this! I also have near constant migraines from my Chiari. My neurologist has been giving me Botox injections in my head and neck to help deaden the nerves, and it does help some. I don’t go the full three months migraine free, but I don’t have them every single day like I was. You might want to look into that. Also, I recently had a migraine cocktail infusion, which is an IV of one drug followed by a shot of Benadryl and a shot of Phanagrin. It takes about two hours and wiped me out for a day and a half,but it has helped some. You could talk to your doctor about both of those. For day to day pain, heating pads, ice packs, and IcyHot help some. I hope you get feeling better! I’ll keep you and your family in my prayers!