What is Arnold Chiari Malformation
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain.
Arnold-Chiari Malformation II occurs in almost all ch...
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Pure frustration!
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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.
Posted on 11/01/09, 09:11 pm |
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Hi, Welcome back, I hope you had a good visit. I don't know what to think anymore! I am feeling slightly better however still having infection leaking from my hole in the head. I am also having increase swelling in my neck. The antibiotics I am taking seems to be helping but still having alot of problems. I am going back to the NS in the am to evaluate my neck swelling. I am feeling very angry though. 
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Hi, I went back to the ns this morning and we agreed that it is time to go in and clean out the incision. The infection is not getting better even after 10 days of antibiotics. I am going in on Monday for surgery at 2:45pm. I am looking forward to it to get better.
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Yay, I'm so glad they are going to take care of this!!! Yay!! How long will you be in the hospital?
lots of gentle hugs here4ya
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They say overnight. Have you ever heard of this with other ACM pt? I can't wait till they clean this out and I can actually start to heal and get my strength back.
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I've never heard of this whole glue thing. But there are post PFD patients like you that do end up having this really hard time with wound healing and CSF leaks. It's awful, I feel so badly for you and for them!! Have you been checked for EDS? Ehlers Danlos Syndrome? You should do some googling about it and also ask your NSG about it. The poor wound healing is a big red flag for EDS.
I do feel so badly for you, and I pray they get this thing handled and you CAN indeed get onto that recovery road and not take any more exits!
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KS, been thinking of you a lot and thinking about your surgery coming up tomorrow. I am praying they get all the infection out and you will feel a lot better! God bless you
here4ya
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I can't believe you would be home with a staph infection and fliuds leaking.That is very disturbing to me. Sorry I just now jumped in here. I just had shoulder surgery and have not been on here much. When I see my NS Dr. Tew I think I will ask him about you. I guess its good that the infection is draining out. But here4ya is right a staff infection can be bad. What if you have allergies to the glue? Should they have maybe tried something else the second time?
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Hi all, I came home from the hospital yesterday after my 3rd surgery. The NS removed a large amount of glue that he claimed would desolve however after 5 weeks of pure hell he removed it all. There was also a small amount of infection which was cultured and so far is negative. The final report will be out tomorrow. I feel much better other than the obvious pain from surgery. I have a 4 inch incision in my head only thank goodness he left my neck alone. I really feel this is the end and i am on the road to recovery. If not i am getting a new NS because I have lost all my faith in my NS. Thank you everyone for all your prayers and kind support. That truely what a support group is for and I greatly appreciate all of your support. Your support has truely helped get me through a the worst time of my entire life. I am right on the edge of depression and frustration and my family and this support group has been wonderful. I think it would be a great idea once I get on my feet I would love to meet you and do lunch. Well it depends on where you are from? Thank you
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