This isn't really a question, but more of a semi-funny story that I figured I'd share..
I finally get into see a guy at Columbia (not the really famous Chiari guy, Feldstein, but still - someone on his 'team'). This guy is shaking his head at me while I"m going through the list of symptoms.. totally unimpressed. I explained I have had the headaches off and on, but had the absolute worst one of my life over last weekend (lasted the full three days, I could barely move) so much so that I was considering going to the hospital bc the pain was more intense than anything I'd ever felt... and he's like "yup, sounds like a chiari headache" - that's it. He was more concerned with whether I could still walk (!) and said he didn't recommend any further MRIs.. which is different from what I"ve heard on here. I also thought it was funny that he told me to 'try to avoid doing things that I know aggravate the chiari' - after I've told him that simply being upright seems to bring on my symptoms, and they are constant... all day, every day, since May - but I should avoid doing what, sitting up?! I felt like he was nuts but am going back for a more comprehensive consult as he got called out for emergency surgery on a 5 year old.
A little disappointed over all, but I'm sure many of you are sadly, used to this or have experienced it too.
I've noticed my right foot dragging sometimes when I get up to walk.. not all the time, and before I was attributing it to my clumsiness or whatever... I constantly make excuses to myself like I'm getting old, etc. - but I'm not yet 30. I'm not sure if the foot dragging and me missing the walls (this happpened on thanksgiving last - I go to lean on a wall and fall into it, having misjudged how far I am from it or something.. my family is used to me being a total clutz so I don't think it surprises them either. How would I know if these are Chiari symptoms!?
The doc also mentioned Topamax as a possibility for the headaches.
If anyone has anything to share.. I would love to hear it. I feel like I'm going absolutely insane. One minute I feel like I'm reacting appropriately to something life changing.. the next I feel like maybe I'm exaggerating.. then my head starts to pound.. this is ridiculous!
I feel the same when I am having a good day, maybe I am not sick enough to have brain surgery. But after being placed on meds to keep my blood pressure up and out of options with the swallowing issues. Then again the horrible headache (worst one yet) I had last weekend too that last three days and I was also headed to the ER but it finally broke. When the dog barked it was like an electrical current through my brain.
I think we all cycle with our acceptance of this illness. I know I have. Truth is it does stink and it is life changing. This llness cycles as well good days and really horrible ones. I honestly loose a few weeks a month that I just cant do. That is apart from the stuff like swallowing, BP and heart rate that I struggle with on a daily basis. Oh yeah and this morning I noticed my right foot is numb. We all go through it and it does make you feel like you are loosing it.
I dont know where you are, I am assuming by Columbia you meant SC? I see Dr Rossner in NC tomorrow. Will be my first trip to a true Chiari specialist. After 3 NS's and 2 NL's I hopefully will finally get some help.
Hi...what u describe is deff chiari....the foot dragging...and depth perception....it was one of my fear with driving, and then I was told no driving bcuz of other issues...but, it was a concern for me as well...I knew it was depth perception, but was not aware I had chiari....
Do get a few opinions and try for a true chiari specialist as u will see a difference in teh way u r treated.
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