Understanding what you going through
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Thanks, mother&wife |
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I am sorry to hear that you are not doing better. I recently had my decompression done on 11/10/2008 and even though I am still just shy of a month after surgery I am doing a lot better. I have found these sites that might be helpful to you. Type in Chip's Chiari Page in your search engine. This page has helped me a lot and they also have a support group. Try also typing in Chiari Malformation Institute in your search engine too. They are a hospital in New York that does ONLY Chiari Malformation procedures and may be able to help you. I don't know where you are located, but it's worth a shot maybe just to get some answers. Maybe your doctor just had not done enough of these procedures too and cannot help you. Have you tried searching for a surgeon in your area that is top notch in this field or has done quite a lot of them? I didn't know that my town even had a support group until I looked and found quite a lot of people who have had this done. I thought I was very much alone in my journey until I started searching. Now, I don't know what the months ahead have in store for me, but I am going to keep the faith that I WILL get better each and every day, even though sometimes I think I will not. I have to as I have two beautiful children that need me. I wish you luck on your journey and if you have anymore questions or anything please don't hesitate to contact me.
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i am a mother of two young boys and a wife age 38. After reading your post, it sounded as though I had written it. I had my chiari surgery Oct 1st and will have mri done end of March or beginning of April to see how I am doing. I have been doing a lot of reading but everyone is different. I am on nerontin for pain but it doesnt help. I would like to know what can help better csf circulation. I have days i feel better than others. My symptoms that have not gone away are strong face tingling on back of neck, face and ears as though the blood wants to burst out my skin or something is crawling under my skin. When I wake up in morning my legs and arm are heavy as though they weigh a ton and i walk like a soldier. at any rate, I wish you start feeling better soon and that your mri results show improvent. I will keep you in my prayers and do not give up. take care, Rosa from NY |
so its been 7 months after my surgery. i went back to my doctor today i told him that ive been out of no where throwing up, i have stabbing pain in my arms that come and go i have some pain in my neck and back. none of my feeling came back still numb. i have to go back in a week to take another mri but for the pain and stuff he wants to put me on neurontin i was wondering if anyone has taken it and how it worked for them please let me know thank you.
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i had surgery last year in april - my recovery has been awaful - i still dont feel recovered and i wish id never had the surgery! i have had just so many problems and the effect on me and my life is just huge - ive not been able to go back to work since the surgery and dont thinkn my work will ever have me back now!
i hope things get better for you - im tired of all this now - i wish every day i could turn back the clock and never have the surgery |
help
Hello, I am look to find a sugeon to relief me from this pressures headache and this noise in my left ear that is driving me crazy and I am having other symptom, have been dx with a9.4mm chiari 2 month ago and not getting any better. can you please tell me the name of the Dr that did the surgery please
thank Laura Quincy,MI Chiari 9.4mm Quote:
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:grouphug:There is a web site called "WACMA" The World Arnold Chiari Association********Click on onsite info and there is a listing for doctors and you can search by state. It looks like there is only one in your state, but if you are willing to travel you can go to another state. Good luck.
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Good Luck! |
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