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looking for help, thanx for any advice

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Old 01-04-2005, 02:44 PM   #1
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Join Date: Sep 2004
Location: az
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kisa HB User
looking for help, thanx for any advice

Ok. Not sure how to start, I have AVM tumors in my right hand & arm. The hand itís very visible on three digits, excluding the thumb & pinky & top of index finger, (but riddled with them on bottom). There is nothing that can be done other than emobilization at this time.(on advice from a trusted radiologist, I will not consider at this time, as I will loose funtcion of what little movement I have) In 1976 a team of Cosmetic Drís, (they are but from a few who study the vascular structure of the hand) attempted removal. The idea was to do the whole hand, not realizing how involved the AVMís became. (They also did not know what they were back then) The middle finger was taken apart & placed back together as best as they could with a skin graft to close. The skin graft popped off & needed to be replaced about 12 hours after completion of the first OR visit They found out they are formed in & throughout the structure of the bone, tendons & ligaments, I have a lot of neccroses (sp?) in the bones. The best way it was described to me was, there is a lot of blood flow, & the capillaries are always moving, & as they move, it is eating the bones. They are commonly found in the brain & or spinal cord, mostly in women, & many never aware. Hormones play a big part, & some women have ruptures when they are pregnant. So the past decade has shed a lot of light on this type of tumor, & yes, they do grow back. Anyway, I have question, & am wondering if this is due to my hand, (is what my firsts thoughts were), or in my brain? I am to have a MRI of brain & cord in the next few weeks,( I am waiting for all the insurance codes to become approved). Along with a nerve conductivity test as well an angiogram. My Dr.s are arranging this to be done at the Mayo Clinic in Scottsdale AZ. I am grateful for that. Ok, so about 8 weeks ago, I went to sleep with my head resting in the palm of my bad hand, I woke up 2 hours later & my entire hand, wrist & arm was numb, I thought it was asleep & went directly to bed. When I woke up, my arm was still numb & my muscles were tight & lots of new pain. I could not move my hand or wrist & I went out of my mind. I went to a few Dr.s & we decided on the tests, so far, we are thinking my pre-existing tumors have something to do with it. Three weeks into living like this, (I was already compromised to begin with) I needed help with washing my hair! my left arm went thru the same symptoms. Today, I am amazed, in the last 3 days, I have control & use of my arms & hands.(after 8 weeks of no use) I have no clue what this could be. I was unable to even wave a week ago, so dependant on others, not able to even write a holiday card. I have been going out of my mind. Can anyone give me any clues? I know this is long, & I am sorry itís so hard to explain, but today I think this is a nuro. Problem, & hopefully I do not have AVMís in my brain. I still have numbness in both left & right arms from thumbs to my shoulders, almost feels like novicane numb, today, my right big toe also feels "numb". I have no clue what this eposode cold be & sorry if this does not make sence, its so confusing & finding the right words to describe it is hard, Thank-you in advance for any advice or thoughts anyone may have. I am at my wits end, & not sure what way would be best to pursue my needs.

It was suggested to me to try this board, if I am in the wrong area, please let me know, & thanx again

Last edited by kisa; 01-04-2005 at 02:50 PM.

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