Wow..what a roller coaster ride * warning major vent*

Hello Everyone;

Wanted and needed to share the roller coaster ride I've been on this past month. I got my official Dx in October after falling and getting a grade 2 concussion. Things started to get worse after that, but nothing like this past month. It started after xmas, when I started feeling weird tingling in my legs. I didn't think to much of it, as I have very arthritic knees. I was heading up the starts Jan 9 to go to bed with I lost feeling in both my legs. Ended up going down the same stairs again and of course hitting my head along the way. 911 was called and off to the local ER we went. My hubby was thinking straight enough to bring the DVD of my MRI pictures. After the doctors had cleared the fact that I had not broken my neck, my husband explain that I have Chiari, which the doctors and nurses looked at us like we were crazy. My husband explained as I was crying in pain at the time. That doctor told my husband and I that Chiari was impossible, my doctors are wrong. They shot me full of morphine and sent me home, the whole time I'm asking why did I lose feeling in my legs. Never got an answer. I ended up back in the same ER not 8 hrs later, when the called and said they found something on the neck xray and pop in for another. Well that turned into a 12 hr ordeal. The triage nurse noticed I seemed off and did a neuro test, which i promptly failed. When I tried to explain to this new ER doctor about Chiari, i went through the same thing again. But this time i was told what was being seen on the CT and MRI's was my brain. It was soft tissue damage. All I could think was "oh boy, I'm in some serious trouble now" During the 12 hrs, I had one of the worst headaches of my life and my legs went limp again. No one seemed to think it was an issue. Again shot full of morphine and sent home. A week later, as i was getting up. Boom no feeling in my legs for about 20-25mins this last. Not prepared to call 911 or go back to the local hospital. I had to have my 17y daughter drive me into the city (1hr away) to the hospital where the NS I'm waiting to see is. It was so reassuring to have an ER doctor not look at my like I'm insane, but unfortunately after a crap load of tests. He couldn't do anything other that get the report to the NS marked urgent. The past 2 weeks have been filled with horrific headaches, dizzy spells, pounding in the ears etc. My PCP doesn't believe that Chiari is anything to worry about, so I've had to fight for referrals to anyone.

But today a ray of light emerged. I got my appt date with the NS..

Sorry this is so long..I needed to vent

Wow that is super scary!!! Hope you get to your appointment and things move fast for you.

It's nice to know others are frustrated too, but not! :( I too have had to rely on my children to be my drivers. My oldest is away at BYUI so my 15 year old told me she was more than happy to be my new driver and feel free to pull her out of school anytime! I too feel like life is a roller coaster, I even put it as my status on Facebook, much to my husbands dismay. Whatever, it's not like anyone who deals with chronic pain hasn't thought about it. I'm so sorry that you are having a hard time getting people to listen to you. Luckily I have an awesome PCP but I did fire my NL for not having a brain! :) I hope that your NS goes well and you get the answers you so desperately need. Hang in there and compliments to your family for being so supportive. Sounds like you've got a great support group through them which is so important. Hope that your weekend is a good one without any trips to the ER. Good luck to you.


thank you everyone for you kind words and support. They have truly helped me feel better. I have been lurking for awhile on the site, but i hope to become a more active user.

@ Sarah, I'd love to fire some of my doctors. But being in Canada that is a difficult thing to do. You can't see a specialist without a referral from your PCP. I basically had to trick him into sending a referral to the doctor I wanted. He was only willing to send me to a neurologist but even with that, not one that knew about Chiari. I did all the research for him, even had documents and case studies for him. I got mailings from all over the States and Canada. He still refuses to believe that Chiari is anything to worry about. His comment to me was " This can't effect you medically or mentally in anyway, shape or form" When I started to question him on why these things were happening to me, he couldn't give me any answers.

Please vent anytime....I have been known to vent at times myself. It is horrible for Chiarians to go to and receive appropriate medical care in the ER. I am so sorry about your legs & fall a lot & have had 4 closed concussions in the past year. Please know you are not alone? Be sure and let us know what the NS says.

Tracy Z.