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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Re: DX with chiari
Oct 7, 2008
Thanks Cindy......yes it is all about aknowledgement. This is sad but one time a new doctor said to me "there is nothing wrong with you". Never saw him again !! I did go to a Headache Institute.........after 3 days I walked. This is no lie they gave me 20 different meds per day and by the third day you couldnt even see a space between my fingers.......they were so swelled. I have had some wonderful doctors too. All the drama started in 1984 it was considered a Workmens Comp case and alot of doctors dont want to get involved. I had 3 doctors that disabled me .
I guess my chief complaint is the headache with pressure pain to back of my head. My neck is middle to left side pain. It will get out of control and quickly blood pressure creeps in up to 200/100. Pain behind my eyes.....yes vertigo is the worst had tons of test for answers for that either. One I went into the dining room then turned to go back to the living room ............everything went black and I couldnt see finally when I could the room spinned so fast I went down. My brother called a ambulance he is a EMT and ER just said vertigo. I have Sympathic Pain in arm also had surgery to cut pain nerve,hoarsness...........just about pain everywhere. Also RSD in arm which I dont believe.I also went to a pain clinic,nerve blocks and that just made it worse.
I refuse to quit looking I am on a journey now. Luckie for me right now I am going to a ortho doc that does want me to have a neck I will ask for the spinal fluid test along with it. I just hope I can read all the test...........maybe my brother will help and since he is in the medical profession he knows of someone
I am also having a Endo with ultra sound they found a small mass on my pancreatis......and I dont even drink. He said he doesnt think it is cancer but wants to be sure.........and check everything else out. I have that done Oct .
Back to Chairi maybe I dont have that but I believe there is something going on in the brain and neck area. It is pitiful when we have to try and read our own MRI'S AND CAT test. We have to do what we have TO.
How are you doing these days did you have the other surgeries done? If I remember right the last post was 2007. Do you still talk to Lisa.........I read all the girls have been thru alot and great support for each other.
Dr.Oz is on Oprah we should email him and suggest he does a show on Chiari.......take care wish me luck on my new journey.
Re: DX with chiari
Oct 8, 2008
Hi Patttyyy~

I read through your post and the thing that popped right out on me is having your spinal fluid checked. If you suspect chiari, please please concider holding off on doing that. It is not recomended to chiari patients and can make your symptoms a whole lot worse!!

I was having alot of symptoms and my neurologist thought MS. He did a brain MRI then a spinal tap. I was a functioning woman, working 7 days a week, though I was having some issues. That lumbar puncture changed my life to the point that I can no longer work and am disabled. I got such an extreme headache after, that traveled down my neck, into my arms and hands. And its been that way ever since. I used to be the energizer bunny, these days, I'm more like the little engine that could:D

I then found out I had chiari and the LP actually messes up the pressure and pulls the brain further down. I would hold off if your suspecting chiari. I would never want anyone to suffer like I have because of this.

Did you have a brain MRI? This is what they use to diagnose. They also do a cine MRI, which checks the flow of CFS fluid. Your vertigo, blood pressure and hoarseness can definately be related.

On top of everything else, they think you have a mass? I am so sorry you've been going through so much. I wish you the best on the 23rd. Please let me know how you make out;)

I haven't returned for another surgery yet. I only had the TC. I desperately need to get back but the medical bills are piling up fast and thats concerning. I have applied for Social security but that may be a long road ahead.

You mention Lisa. One of my biggest issues these days is my memory and I can for the life of me remember who Lisa is? :D We post to so many.

I definately wish you well on this journey. It takes alot of work on your part but don't have alot of expectations that Dr's will be willing to concider chiari. So many have blinders on. Its really up to you do find it, unfortunately, then prove your case. Of course seeing a Chiari specialist is in your best interest if theres something there. Hang in there but stand strong!!

Take care


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