My chiari was discovered when I got an MRI to look for a pituitary tumor that could be causing low testosterone. They didn’t find a tumor but they did find the CM and sent me to a neurologist for evaluation. The neuro test didn’t find anything, but as I learned more about the condition it appears I do have some symptoms. I don’t typically have any pain, but I do have lifelong tinnitus and complex sleep apnea, which I suspect is caused by the CM. I suspect I’ve had the sleep apnea since childhood, as I had nocturnal enuresis (bedwetting) up until puberty. I was a forceps birth which I’ve read could be a possible cause of CM.
I also have Celiac and other food sensitivities, and mood issues. I’m not sure which is caused directly by the CM and which is secondary to the other conditions. For instance sleep apnea can cause low testosterone. After getting my sleep apnea treated my testosterone did not recover on its own, so I’m now on supplementation (Androgel). Not sure if that is just because I’ve had the sleep apnea for so long that my testosterone production was permanently shot, or whether the low T is caused directly by CM. I occasionally get migraine visual auras but interestingly never get the migraine pain itself.
One thing I’ve noticed is that my symptoms get worse in the springtime, when I get seasonal allergies. Does anyone else notice an increase in problems during their allergy season? If so did getting allergy shots help any?
I live in Denver and unfortunately the chiari specialist who lives here has recently retired. I went to see another neurologist about my concerns, but he seemed dismissive of the fact that I didn’t have any pain and basically told me to come back once a year for a new MRI or if I do start getting headaches. Anyway, looking forward to learning more and hearing about other people’s experiences. I’m also interested in finding any doctors in Colorado who might know more about chiari than the one I ended up seeing.
Hi Nick, I too have a 5mm herniation laying down, but I also have CSS. Dr wants to replace 3 discs. I have no cysts, but blocked CSF. Neurosurgeon recommended neck and Chiari surgery, but I am not ready. I have sleep issues too, bladder during the day. I wear a hard collar when doing chores and driving, helps the head, neck and shoulder pain. Wear a soft collar at night, it helps the arms/hands from going numb and tingling. I have been a migraine sufferer for about 22 yrs. I get dizzy at times, drop things, swallowing issues…nothing that stops me from driving, taking care of my grandkids. So I consider myself pretty lucky. Taking much better care of myself since being diagnosed in Dec. Tina from WI
I haven’t had a CSF test to see whether there’s any blockages. Not sure if that’s something worth doing for the symptoms I have. What’s keeping you from going ahead with the surgery?
Hi Nick, I didn’t have a CSF test, just an MRI. The Nuerosurgeon showed us the scans in slices and showed us where there wasn’t any spinal fluid. I think it was white instead of grey. After researching about Chiari, it seems many patients have the same issues or worse after surgery or need more surgery. My mom had a brain tumor in 1980 and brain aneurysm in 2011, so I know first hand how serious brain surgery. I haven’t worked since 2005, but I drive, do chores, spend time with my 5 grandkids. Since December I try not to bend over. I don’t strain, ride on the Harley, shovel snow, chop wood, or lift heavy items. When I start to have a lot of pain I put my collar on and rest. I know if and when it gets really bad I have the option of surgery. My father died of Alzheimer’s at 76, so I worry about that diagnosis too. I already have some memory issues, so opening the brain it not the best thing for me. Tina from WI
Did you get the special MRI that shows the csf flow or was this just on a regular MRI? They didn’t check my CSF at all, just had me do a neuro exam to see if I had any symptoms.
From what I’ve read the surgery is serious and the results are mixed, so I don’t blame you for being hesitant.
Yeah the one I had didn’t use dye, but then again the reason I was getting it was to look for a pituitary tumor that might be causing low testosterone. The discovery of the CM was incidental to the reason for the MRI.