I just submitted my info to the WI Chiari Center. Ugh! It's that double-edged sword, I want them to find something so they can fix it and I don't want them to find anything so I don't have to have anything done to fix it. It has taken me months to fill out that appointment form because I am "Cleopatra...Queen of Denial"! I know there is something wrong in there but do I really want to know what it is?
Ooops! I didn't know this would show up here! I was just chatting with myself...LOL
Please post any information you want to discuss. We are here for you & I personally like the :Queen of Denial" comment.
I know how challenging lfe with Chiari can be. The ups and downs are really stressful . Just know you have a lot of people
Hi Emmaline, I have already had decompression surgery and was good for about 9 weeks and then I had a car accident (they warned me about doing that!) and since then I have been having problems. And the problems have gotten progressively worse. I have already been through surgery once and don't want to do it again (waaah!) But sometimes the pain is so bad that I can't stand it. I guess I am looking for a Chiari specialist because all my doctors have little or no experience with Chiari, even my NS. I have never had a CINE MRI and wonder what they would see. I don't sleep at night much and I am exhausted by 2 pm and ready for bed. I have 4 kids - 3 with special needs, which is a whole nother can of worms! So I guess I am just dragging my feet because I don't want them to find anything else wrong with me but I know I need to take care of myself, for my family, and get checked out. I certainly don't want to live my life the way I have to now! I would love to go 1 just ONE day without pain or pain medication. Lofty goals, I know, but a girl can dream, right! :)
Wouldn't you really rather have a reason to be experiencing what you are? Not knowing was hell for me, once we got to the surgery conversation, I was calm about it. Everything became ok again.
Hope whatever they find gives you what you need!
I know exactly how you feel. I need a revision and I have been dragging my feet making appointments. My doctor is very busy also so it's taking forever. Just thinking about going through it all over again turns my stomach. You should be proud of yourself you took the step and you'll find out more information it's better than not knowing. Then you can decide from there. My final appointment is in a few weeks and my knees are weak thinking about it.
I totally understand you right now! I think we may be in a similar boat my friend! I just submitted my information yesterday! I'm not sure if I did it to find answers for myself or to shut my mother up! LOL
I had decompression in 06, he made room and placed a dura patch in. Nothing was removed, just made bigger for flow. I've been dealing with a lot of neck, shoulder and arm pain. It causes headaches in the back of the head. My eyes often feel like they are going to explode. Ears ring and feel full.
I HATE saying anything to anyone, because of the stupid responses. Sure enough I said something, and the person replied..."Oh I get that too, it just tension". Maybe they are right? But my left arm is getting so weak.
So I feel it's time to give myself a peace of mind. I just want to make sure that everything is okay. But I don't think I want them to find something that needs dealt with.
I live in Northern Illinois, 3 hours from the Wi Chiari Center.