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-   -   Tryin to get better! (https://www.neurotalk.org/arnold-chiari-malformation-and-syringomyelia/129580-tryin.html)

momof5 08-04-2010 09:52 PM

Tryin to get better!
 
I am a mother of five. I had my first decompression surgery on May 26th. Thought recovery was well on its way. Little did I know, when I went back to the doctor there was fluid at the incision site and was once again cut open on June 26th. The doctor said my body rejected the patch that was put in place. When I was cut open he said fluid shot out of the incision. After going home and maintaining a very high fever, I went to the ER and was diagnosed with Aseptic Spinal Meningitis. I was released and allowed to come home with a port in my arm to administer anti-biotics twice a day. The port was taken out a few days ago but I have developed a new symptom. I have severe pain on the right side of my face that can be triggered with as little as rubbing my nose or brushing my teeth. My right arm goes so numb and I can't use my hand when this happens. I am so confused as to what is going on and beginning to wonder if the past few months have really been worth having the decompression surgery. If someone can help explain this I would be very grateful.

Feel the Burn 08-07-2010 03:11 PM

Quote:

Originally Posted by momof5 (Post 682080)
I am a mother of five. I had my first decompression surgery on May 26th. Thought recovery was well on its way. Little did I know, when I went back to the doctor there was fluid at the incision site and was once again cut open on June 26th. The doctor said my body rejected the patch that was put in place. When I was cut open he said fluid shot out of the incision. After going home and maintaining a very high fever, I went to the ER and was diagnosed with Aseptic Spinal Meningitis. I was released and allowed to come home with a port in my arm to administer anti-biotics twice a day. The port was taken out a few days ago but I have developed a new symptom. I have severe pain on the right side of my face that can be triggered with as little as rubbing my nose or brushing my teeth. My right arm goes so numb and I can't use my hand when this happens. I am so confused as to what is going on and beginning to wonder if the past few months have really been worth having the decompression surgery. If someone can help explain this I would be very grateful.

I had that surgery,, two weeks later ended up in the ER with menigitis,, had to have surgery again,,, I can tell you to call the surgeons that did you,, but I will tell you now that they are going to say that from there standpoint,, they did what they do,, they fixed the Chiairi,,, and that anything you are experiencing will need to be adressed by a neurologist,,, you are caught in the same limbo land I am in,, one will pass you on to another,,, sorry you had to go through such a barbaric procedure,, and you had to suffer with the after effects like ai also did

momof5 10-13-2010 11:23 AM

Quote:

Originally Posted by Feel the Burn (Post 682928)
I had that surgery,, two weeks later ended up in the ER with menigitis,, had to have surgery again,,, I can tell you to call the surgeons that did you,, but I will tell you now that they are going to say that from there standpoint,, they did what they do,, they fixed the Chiairi,,, and that anything you are experiencing will need to be adressed by a neurologist,,, you are caught in the same limbo land I am in,, one will pass you on to another,,, sorry you had to go through such a barbaric procedure,, and you had to suffer with the after effects like ai also did

So, here is the latest....nothing was getting done so I had my primary doctor order another MRI...This new one says there is now a mega cisterna magna. There is also spinal fluid still on my brain. Still regreting this surgery. Between the course of the first and second surgery I had lost twenty-six pounds. Ironic, when I come out of the military, I was 180 of muscle. I have read that since I am having so much trouble with the cerebellum, which controls your muscles, is why I am loosing so much weight. I now weigh 127 and am 5'11". I am nothing but skin and bone and feel very weak all the time. The doctors act as thought they do the surgery and then they are done with you. Bedside manners gradually sluff off as time goes on and they do not believe you. I had begin to think that recovery was finally here...YEAH...until the headaches come back. When does this stop???


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