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Old 05-16-2009, 01:49 PM
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SPINAL AVM T-10/T-12
I was in the military when on Nov 2005 I woke up with a sharp pain in my back. I got out of bed and collapsed to the floor. My left leg/foot had varying degrees of numbness. I made it to the doctors on base and took X-rays/MRI's. I was able to limp around. Once the MRI's were read they noticed a large mass on my spine (T-10 to T-12). They thought it was cancer. My neurosurgeon gave me an Angiogram and told me it was a large Spinal AVM that "exploded". No surgery could be done. I actually got all my sensation back within 2 months, with just numbness in my thigh and a little in my foot but little to no limping. Then April 2006 it all of a sudden started to go bad again for no reason. I limped to the doctors and needed a cane by the time I left the office...they immediately sent me to my neurosurgeon. One look and he admitted me into the hospital and had steroid treatments to slow down what was going on. I now was wheelchair bound with numbness from my left hip to my foot. Also now couldn't urinate...needed a catheter.

After a month in the hospital I was able to learn to walk with a walker and finally a cane. I then left to rehab. It took 6 months to stop using the catheter but I still retain too much fluid to this day. Things were getting better the rest of the year, walking better and then I re-bled in Dec. Since then I have a major limp, pain issues, bowels issues, and sexual issues but it has plateaued off for the last year. This caught me between relationships and these issues have made me I guess less attractive and as I am approaching 40 it doesn't look good for having a family. But all in all, after reading other stories at least I am able to get around and the pain is bearing with meds. i am one of the rare Spinal AVM's so if my story helps anyone at least that is a good thing. I am now retired from the military as of March and living off my retirement and disability.

<u>Update:</u> <b>Does your AVM sting at times?</b> - May 16, 2009 - 15:04 EDT
I ask this because evn though my AVM had a massive hemorage that could not be treated and that was 2 plus years ago, it still stings right at the spot of the AVM at times. It scares me because I keep thinking its going to explode again as it did originally in a sharp pain and that my condition will get worse. When it first started to happen the doctors did another MRI and Angiogram but nothing was new. This sensation occured off and on for awhile but now is almost daily. I guess I may just be oversensitive to it but it is scary. I don't want to be a bubble boy and keep asking for MRI's and my nuerosurgeon says ther is nothing left of it to be a problem any more. It affects my sleep. I just wanted to know if anyone else had this occur. My story is a few stories down.
<u>END Update</u>

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Old 10-18-2010, 01:36 AM
RON RON is offline
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i had an opp for avm on the spine in 2003 and i was parlized from the waist down with no blader or bowel functions or sexual feelings i to suffer from stingin legs and feet painfull lower back and hip pains i cant stand or walk im waiting to see a specialise my head is always buzzingim on all kinds of meds baclofen gabapentin temgisic metformin thyroxin amytriptilnand more every time i ring surrgery thy say there nothing thy can do im ron from wales united kingdom write back and i can tell u more all the best ron
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Old 10-27-2010, 05:55 AM
RON RON is offline
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Originally Posted by RON View Post
i had an opp for avm on the spine in 2003 and i was parlized from the waist down with no blader or bowel functions or sexual feelings i to suffer from stingin legs and feet painfull lower back and hip pains i cant stand or walk im waiting to see a specialise my head is always buzzingim on all kinds of meds baclofen gabapentin temgisic metformin thyroxin amytriptilnand more every time i ring surrgery thy say there nothing thy can do im ron from wales united kingdom write back and i can tell u more all
the best ron
i dont no eaxctly what i can ad i wasnt told exactly
what i had only an avm paraleces might happen but u dont think it will happen to u i spent five weeks in hopital and then i spent seven mounths in rehab hospital hope you can write back ron tthanks
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Old 10-28-2010, 10:55 AM
RON RON is offline
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its happening to me daily my hole body stings all over and hurts all over and for most of the day its ok its happening right now ron FROM WALES UNITED KINGDOM
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Old 11-04-2010, 09:43 AM
RON RON is offline
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john why dont you reply to my thresds give me some idea if anything happens in your boady ron
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