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.
I was diagnosed with Chiari I in 2003. For a while the symptoms of Chiari were stable and nothing to worry about. It was about 2010 when I became disabled for migraines/headaches. Luckily my Periodontist has put me through a TruDenta program that has treated some of my migraines but my headaches are still bothersome and will put me down. My Chiari on the other hand like yours are is getting worse or at least the symptoms are. I am finding that in the afternoons I am finding it really hard to hold my head up. It is truly as if my neck muscles are not strong enough to hold my head up. In the past 3 to 4 months I have become the most clumsiest person in the world and seem to be tripping over myself for some reason. I have limited myself to driving during the day and short distances because my depth perception is not great. Now here is the big one; I know it is know female related b/c I just had it tested, I am going through a huge bought of insomnia. . Does anyone want to weigh in?? If you do go back to that first group, I would demand an appointment Dr. Feldstein only!!
This thread you posted on is old and the member you addressed your comments to is no longer an active member....you can send a PM ( private message) that will generate an e-mail letting them know someone is trying to chat with them.
Or you can post questions or info in a current thread and that way chat with current members.....if you have any questions please let us know.
I have not had to deal with female issues for so many yrs....not sure my memory will help with what you are comparing your issues with..but I still havev nights of insomnia...and I had the PFD 6 yrs ago.....not sure it is female related it is more Chiari related...JMHO
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