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osaka53

01/11

I hope the surgery will help you. My cysts have nerve endings wrapped up in them are inoperatable because there is a good chance I would be paralyized. My family doctor knows about my cysts and the pain I am in and has given me rx's for pain meds and I am managing. I just hate that I can not work or do things that I used to enjoy doing. Take care

osaka53

01/11

I could not do as much for them as I had been able to enjoy with their sister. My whole life changed when I could no longer work. Had it not been for the support group, I really do not think I would be here today. After you get treated like a nut case or drugseeker, it takes some of the spark out of life. I do not know when my cysts appeared, I just know that begining in Sept 99 the pain raised its ugly head. People that went to LPN school with me and worked with me as a nurse, tell me that when I sat down, I always sat with one leg folded under me and I did and have as far back as I can think. It hurt to sit on a hard surface I hope you find answers Take care

osaka53

01/11

It is a nightmare to be in such pain and no one listen. But you are entitled to have your pain recognized and treated. And, if the nerve damage is bad enough that you can not function normally--it is a disability. I applied for disability after I could not tolerate the pain I was in from being on my feet and walking and working as an LPN and I was approved right off the bat. I figured I would have a long battle but I got one month of SSI and then got disability. It is not as much money as I would be able to make had I been able to continue my career, but it beats nothing. My cysts were worse then my breast cancer.I no longer could function as I did before--I was already grandma to one, and in 1999, my oldest son and his wife had twins.

osaka53

01/11

They did an EMG on me and found very noted nerve damage down my lower sacral/hip area and down my right leg and into my rt foot. I can not feel the bottom of my rt foot. That makes driving rather tricky--I can feel some sensation in my knee and I apply or release my foot to the gas pedal that way. Where there is a will, there is a way. I need a total knee replacement but won't do it because I am afraid I won't have that feeling and won't be able to drive. Sadly, there are thousands of us, the world over that suffer from the cysts and the lack of caring from the medical community. But they are taught that the Tarlov cysts cause no problems. Go to the support group and you will find some answers and maybe some hope and find you are not alone.

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