Hi All! I hope everyone has had a safe and good weekend. I am writing tonight because I know most in this group has an understanding of how I am feeling. I was recently diagnosed with ACM. Amoung many symtoms my left left was affected which caused an ataxia. I could hardly walk so it was decided surgery was the only option to prevent permanent damage to my leg. This was over six weeks ago. On Sept 14th my 1st surgery was done. You can only imagine my excitement when I was finally able to get up that except for some weakness (which continues) the ataxia was remarkably better. I was truly happy. After 18 days I went to the NS to have my stables removed and to everyone's surprise CSF fluid was leaking from my head, after a weekend of bed rest to see if the leak sealed on its on I had to re-admitted into the hospital. I had surgery again on 10-9-09 to repair the large leak and was in the hospital 12 days with a lumbar drain. Since I left the hospital my head has been leaking this yucky substance which the NS claims is glue. This past Friday after yet another visit he removed the stables and said he believed it was excess glue. All weekend we have to do multiple dressing changes ( which pulls out my hair) which hurts more than I can say! Well I guess my point to all of this is that I am getting depressed and frustrated. I am so tired of being in pain and having this horrible scar leaking this nasty stuff. I want to try to start healing and start PT so I can get my life back. Thanks everyone for your time. I guess sometimes writing it out and getting feedback from people who understand is the best therapy.
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