We are patients and survivors of Chiari (types I-IV), here for your support.
Latest Activity: May 11
Started by Deborah. Last reply by TracyZ Oct 2, 2013.
I had Chiari surgery last February. He also did spinal surgery C 2-7. He had to do both because I also have a rare blood disorder and I am Coumaden. I had to get those Lovenx shots in my stomach…Continue
Vicki, i totally agree! When we found the syrinx in my back, the neurosurgeon finally saw me. No matter how bad the pain was for me he said he didn't operate on the Chiari until it was passed a certain degree of herniation. He may be a good neurosurgeon in this area but he knows squat about Chiari! i left the office feeling just as bad as when i went in. When i finally get in to my neurologist i will be telling her that. She is so booked i had to wait for my appt in 2 weeks, even though i was having major feeling of dizziness, lightheadedness, and buzzed. It's ridiculous! And i had to deal with that for at least 4 days straight! they should all be put through some kind of pain simulation if they will be working with Chiari patients. i am still trying to get in to see a guy out of town that other members in my groups here have seen.
Tasmanias autumn(USA's Fall)has started to cool down and we have had rain,Chronic Pain has gotten worse and Dr seems to think because I had my Chiari decompression done I should be fine.Never did anything for my degenerative spinal condition. Dr still hasn't read up on Chiari.I think they should all have to experience simulated pain before they practise,what do others think????
To the lady who wanted to know how to get an appmnt w/a pm doctor...I went through my primary doctor....It will be a long wait...buy at least I hv an apptmnt!
Tracy- Sending prayers your way. Sorry to hear you're feeling bad.
I just have to say that Mayo Clinic in Arizona has the worst service every and they didn't know anything about Chiari. I live in Alaska and sent down all my records, even dental, because they asked for 2 years of records.. When I went for my first appointment I figured someone would have at least reviewed my records. She said no, she likes to wait until that day of the appointment because so many cancel. I said I traveled all the way from Alaska and was told there would be a (Team Approach) and since I was on a time table, we were there 21 days, I wanted to get something started. It's like I was bothering her. I had the MRI 3 days later. . Then she waited and waited to call me. A week before we left, I had already given up and when we went for the follow up appointment, she had the nerve to say that we could have done it over the phone and by the way, they don't diagnose a Chiari if it's less than 5.
Hello beautiful people..
I posted a sad situation about a recent trip to the ER for an emergency directly caused by my Chiari 1. It was in regards to my throat closing up and my lack of ability to get my swelling and pain under control because of a significant flare up . Just to reflect on this visit the ER physician was veryngabusive towards me due to his lack of knowledge of Chiari and his lack of compassion for chronic pain. This physician was combative and convinced I was a drug seeker before even entering my room. I won't go back into detail as I am sooo over him:) Anyway, because I am determined to educate as much as possible Chiari 1 and the havoc it wreaks on our one and only body I decided to not sweep under the rug. I reported him to the hospital administration, risk management and ER house manager. I didn't do this for any compensation no reason but to educate. Anyway, I didn't expect any of these individuals to take me seriously BUT- I received a call back from the risk manager and I am happy to report
Hi all, I was diagnosed with Chiari Malformation type 1 in 2011. I had my 1st surgery in Jan 2012 which was schedule, my schedule surgery was in Feb in 2012 which was not planned. I blacked out in my daughter's room and she called 911. I woke up in the ER with my hunsband and daughter there and the Dr. telling them that Ieither had a heart attack or seizure. I went back to the hospital back in Nov and they found a kink in my brain stem. I have an appointment with the mayo clinic in June. Now I have chronic neck pain and chronic headaches, my speech , i stutter, i have to really think about what I say and sometimes in mid sentence I stop because I forgot what I was saying, I also repeat myself. I am waiting for results from my MRI. I dont know what else to do. Any ideas would be great
I know that everyone is different and have different degrees of Chiari, but I have been through most of the things that are being posted on this site. All I can say is it all stinks !! My pain started in Feb 1990 and was finally diagnosed in Dec 1999. Having been through everything in Sept 2011 I finally feel like I am winning. All the symptoms that I have had are gone, even pain was down to once or twice a month. They were minimal compared to what I was use too. So if I can conker with Gods help everybody can.
I just wanted everyone know that we all have cycles of issues and there is a light at the end of the tunnel.
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