one sides headaches and chiari

[happyname]

Hi Everyone,
I was diagnosed several years ago with Chiari measuring 7mm.  At the time I was having headaches only on the left side.  My head always hurts at the base of the skull and also behind the left eye.  I saw a terrific surgeon here in Dallas who told me that looking at all of the MRI's he really didn't see any type of obstruction and that I didn't fit the profile of someone who would need surgery.  I have since developed some white lesions which the neuro says is MS and am on multiple meds to help with the headaches and other weird symptoms but I always worry about the chiari being the headache trigger.  Some times I can tell my face is swollen a little on that side.  I am curious if anyone out there has any similar experience?  I would hate to have spent 3 years dealing with treating symptoms that people think is due to MS and be wrong.  

Thanks

[dana_8142]

Good luck to you.  I am glad I could be of some help.  But remember - don't ignore your symptoms, keep your doc updated on any changes, and always have a positive attitude!

[happyname]

Thanks so much for your response.  I really never thought about a different pillow.  I did have all of the blood work and a clear spinal tap.  At first, they watched everything MS related because the numbness and weakness were about one year out from having a round of post bite rabies shots.  Everything that we read and researched stated that symptoms would have started much sooner if it had been due to the shots.  Who knows?  Anyway, I think I will run out and get a pillow.  I will let you all know the result.

Joy

[dana_8142]

It is really hard to say what is causing your headaches, especially if you have MS.  But I was wondering, was your MS diagnosed based on the lesions, or did you also have a spinal tap.  Sometimes MS is misdiagnosed it is possible to have Lyme disease or even syphillis and be diagnosed with MS (both lyme disease and syphillis can cause lesions on your brain).  Just get the blood work to rule thes out if you haven't already.  

As for the headaches, I recommend a good pillow.  I've been telling a lot of people about this lately.  I have Chiari also, mine is at about 7mm they said I was borderline for surgery and they just wanted to watch it.  That was in March, I recently had a follow up MRI and my neurologist said that it actually looks as though the circulation of fluid around the chiari has improved (the chiari is still the same size, that will never change) but things aren't looking so "packed" in there.  Also, my syrinx has started to recede, very slightly but there is a visible difference.  The only "treatment" I have recieved since march was a new pillow.  My husband bought me a - tempurpedic contoured memory foam pillow.  It was a little expensive, and a little akward to sleep with at first, but worth it.  The constant chiari pressur headaches that I had for nearly 2 years straight are almost non-existant.  And I can't remember the last time I had neck pain from my syrinx.  I really do attribute it to the pillow.  And I recommend it to everybody.  If you are worried about the cost call your insurance and see if they will pay for it as a medical need.  If they will not, it is tax deductable as a med need if you itemize it.  Also, there are pillows specifically designed for people who have had chiari surgery called Zipper Head pillows they are on www.medpillow.com  I have not tried these ones specifically, but they can be a little cheaper.  Good Luck to you.