I was diagnosed with Arnold Chiari Malformation, type 2 in February of 07. Surgery soon followed because of the rapidly progressing, disabling symptoms that accompany this disorder. Soon after the surgery in March of 07, a large pocket of fluid developed behind my head at the surgery location and again surgery was performed to relieve that fluid and resuture a hole that had opened up due to the pressure of spinal fluid. After this second surgery, spinal fluid leaking could not be controled from the 10 inch cut at the top of my head down to the base of my neck. Many extra sutures were put into place on my head, but to no avail, finally resulting in a third surgery in which a lumbar peritoneal shunt was inserted. Although it has only been 5 days since the shunt was put in, I still have a drop or two of fluid every now and again leak from my head. Will this ever clear up and the shunt kick in or what exactly am I now dealing with for the rest of my life? I strongly regret the surgery and the discomfort of the shunt. Perhaps I am not being patient enough but I feel that I am in for more than I knew I was going to be dealing with. Is spinal fluid leakage common for this type of surgery? I'm not blaming my doctors in any way, just asking for other advice and help if there is any to give. Thanks.
This is not my area of expertise, so I can only speak generally. It's certainly clear why you had the initial surgery. Then, when the CSF leak appeared, it was VERY important to try and close it. A leaking of CSF fluid to the outside of the body opens the brain to exposure to the bacteria around us. The chances for a devastating brain infection, called meningitis, is very much higher. So they had little option, but to try and close it.
When it persisted they tried decompressing the pressure by venting/shunting it into your abdomen.
You are right in the middle of the body's response to surgery. There will lots of discomfort for a while. Try to be patient and let your body heal. The ongoing small leak may indeed close now by itself because it's not under so much pressure
A sequence of three surgeries is a major "trauma" both physically, emotionally and psychologically. What an enormous amount to endure. It would be very hard to be patient, but that's exactly what you need to do. You are dealing with pain, frustration, fear and anger and while you try to heal, can you find someone to talk to? Possibly a therapist, spiritual guide a good friend? Even keep talking to us here. We're forming a nice bond here on the forum, and maybe you can unload on us. Also consider that, at least for a while, you are at risk for depression and may need help with that.
The day after writing this first posting a week and some ago, I had to have surgery for CSF leakage again and then again 3 days after that, finding out that the shunt had become pinched and needed to be taken out and a new one to replace it. 5 surgeries later, come to find out this is common for this surgery ( arnold chiari malformation ). You are right Quix, after a few meltdowns along the way the doc's were making me talk it out until I could make it through a day without the look of gloom and doom and buckets of tears. I have made it 8 days without any trouble with the leaks ( major breakthrough so far for me) and I'm trying not to get anxiety, as if waiting for something to happen kind of feeling. For anyone that has had this surgery and these problems, there are a lot of counseling groups out there that your doctor can direct you to. :)
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