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Old 05-05-2009, 08:41 AM
chiarithree chiarithree is offline
New Member
 
Join Date: May 2009
Posts: 4
15 yr Member
chiarithree chiarithree is offline
New Member
 
Join Date: May 2009
Posts: 4
15 yr Member
Smile hello there

Hi, I'm a fellow Chiari patient mine is at 7mm, my daughter has chiari and she is also at 10 mm. My mother has Chiari but we don't have the report that says where hers is at as far as herniation. I feel that every Chiari patient is different and has different symptoms and pain levels so what one patient feels may not be the same as the next patient.

My mother and I have had the migraine headaches daily all my life through my teens when all the sudden they just stopped in 2007, I was also diagnosed later in 2007. The only thing I had changed was to quit caffeine and also stopped taking the Exedrine for those migraines, I was taking those daily too and I think I was getting rebound headaches from those too, at the time I found out I had Chiari, it seems that stopping that had stopped those headaches for me. My grandmother has had migraines in her teen, twenties and thirties years but now since her 40's 50's and now in her 90's she doesn't have any headaches, we don't know if she has Chiari but I wouldn't doubt it.

Somewhere it is written about Chiari can regress or go back up into the skull as we age and maybe that is what has happened to me? I have no way of knowing that since the first MRI was in 2007 and I'm now 38 years old. The followup MRI 8 months later showed it as the same.

I guess what I'm saying is that because of my case we are currently watching and waiting but I'm for the most part pain free, just have other strange symptoms like muscle twitching, joint pain etc. (but I also have autoimmune disease, which at first was diagnosed as fibromyalgia, go figure). I however have a cervical small syrinx, empty sella, and pseudotumor cerebri (in remission). My mother and daughter don't. Now my daughter who is at 10 mm and she is in her teens has no daily headaches, just occaisional ones on the top of her head, but she has other strange symptoms such as the postural hypotension symptoms, occaisional sparklies when standing up, but those come and go not there every day for her so we are watching and waiting on her too. However, myself, daughter, mother and grandmother all have "familial essential tremor" of the hands, I'm betting that is going to be found to be a Chiari thing too eventually someday. We all shake in the hands when they are held out or trying to do fine things like say cutting a cake.

I would be concerned about the shots depending on what they are, if they are cortisone, I believe those can actually do more harm to the muscle tissue over time than good, but I believe that is with several repeated shots. I know they told my father that when they wanted to give him shots for carpel tunnel. The first doc I saw wanted to give me the shots as he suspected my symptoms were related to the neck, he was in a way right as I also have degenerative discs in the cervical spine like my mom and grandmother do.

However, if you are in alot of pain then maybe surgery would be best for you. I would definitely keep in touch with the NL and NS and get second opinions if you need to, it took me three before getting a proper MRI and diagnosis. I've heard that it's true that sometimes surgery doesn't fix the problems/symptoms for Chiari patients, especially those that have other complicating comorbities like Pseudotumor Cerebri and autoimmune disease like myself. I was told that having surgery may not fix it, and possibly could also make things worse for me than I'm dealing with now, which is mild for me. I dearly love my NL and NS and trust them and that is where you have to be at to make those decisions about whether or not to have the surgery. My thoughts and prayers are with you and hope you can get relief from your pain, best wishes and good luck with college too, thats wonderful!
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