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Living with Chronic Pain, boy what a treat.

Started by Deborah. Last reply by TracyZ Oct 2, 2013. 2 Replies

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

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Comment by Furie18 on April 7, 2014 at 10:25am

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. 

Comment by Vicki McGowan on April 7, 2014 at 2:59am

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????

Comment by Potatopie3 on October 2, 2013 at 2:13pm

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!

Comment by Jenger on July 26, 2013 at 10:50am
Tracy, I read this and it makes me want to cry. I was diagnosed in 2004 with Chiari Malformation. I had the Crainiotomy with cervical resection. I had been mistreated and misdiagnosed so many times, before the surgery. I can't believe how many of us are in and out of ER's. I have had Botox to temporally paralyze nerves, occipital nerve blocks, IV caffeine treatments,Lidocaine injections, so many things over these years I can't begin to remember them all.
Looking back, my life now no longer resembles the one I used to lead. I was productive, social, up for anything, hands on, you get the picture. I now am shut in most days. Struggling to still be a Mom and Wife to a very supportive family. (At the beginning of this my kids were toddlers 13 mos. apart.) But the Pain ruins a lot. I really have to psych myself into being positive about me. I don't trust doctors anymore. That is the worst.

Tracy this is where I get to you. I have been on my own for almost a year now after 10 years of being a guinea pig for any doc that thought he could help me. I am trying to become proactive. trying different things. I have lost a little weight, trying to start exercising for the endorphins, trying to eat an anti inflamitory diet. It helps nerves fire less, hence less pain. Looking outside of the box. I started knitting. It's cheaper than therapy and it is helping me have something to look forward to doing. I don't know if any of the stuff I listed will help you at all, but I guess that most importantly I have to take back control in this. Just for sanity reasons. This whole experience has been out of control from the beginning. I've been severely debilitated for many years and need "Me" back. I think anything that empowers us makes us stronger. We are gonna have bad days, worse than most have. But getting back more good ones will be nice too. You may have to find something that distracts you enough to bear the pain. I Wrap my head in a heating pad or ice, sometimes lay in a tub and keep my head I the hot water. Anything to soothe, I just try to get through. I am fortunate that I don't work. I feel for you Tracy. When it's bad, it's hell. I'll keep you in my thoughts and prayers.
Comment by Kristi W. on April 30, 2013 at 10:14pm

Tracy- Sending prayers your way. Sorry to hear you're feeling bad. 

Comment by Puggles on April 30, 2013 at 5:54pm
Tracy
I'm so sorry you're having a hard time. Prayers and positive thoughts being sent.
Comment by DianaInAlaska on April 29, 2013 at 4:34pm

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.

Comment by maggie on March 24, 2013 at 5:07am

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

Comment by shannon on March 23, 2013 at 1:27pm

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

Comment by tntmccabe on March 23, 2013 at 5:48am

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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