OK, I understand that when Cranial Nerves have been injured or damaged the associated pain and problems don't necessarily go away post decompression. So how is it then, that I keep reading about people who are having multiple Decompression Surgeries? Isn't that problem alleviated by the surgery? I thought that by making more room for the Cranial Nerves and the back of your Brain, that.at the very least you had cleared that hurdle. It seems that although they have known about this malformation for many decades there is an awful lot of guessing going on. How can that be???
Most people who had to have revision surgery didn't have a complete decompression the first time. Not enough bone removed, the dura wasn't opened and patched, or in some cases too much bone was removed leading to cerebral slumping. Other times scar tissue develops and blocks csf flow and surgery is required to remove it.
That is a wonderful question!!! And thanks for answering Anglyn
Thank you, so much for your responses. I try always to look on the positive side of things, but sometimes it gets overwhelming. It seems that every time I turn around there are more problems and I can't run fast enough to stay on top of them. Due to a previous illness, that only fell short by a breath of taking my life, I have trust issues with Doctor's and have a marked anxiety about Hospital's. My head is in so much pain most of the time ( as I only take pain medication at night to allow sleep) and then you have to add whatever the Cranial Nerve problem of the day is, on top of that. I feel constantly sick, to my stomach as a result of my brain trying to deal with exceptionally strong pain coming from different areas of my body all at the same time. I don't know about the rest of you, but I will do just about anything to NOT throw up. Talk about adding fuel to the fire... I have a little boy that just turned 4, who deserves so much more than my body can physically give. I would love to hear some of the coping techniques some of you have come up with. Right now, I just force myself to do most of what he asks for and pay the consequences quietly while he sleeps. With my perfectionist personality it seems that I just can't stop trying no matter the price.
Hey!! Unfortunately, I am dealing with this right now with my son. His surgery was 5/29/12. 12 week post op MRI looked great-30 % decrease in size of syrinx and Sean had no symptoms. 6 months later-his MRI looks like he never had surgery. From what we are being told, there can be scar tissue formation where they did the duraplasty, which can obstruct the flow of the spinal fluid. Sean's surgeon used his own tissue for the duraplasty, which I am told has the higher rate of scar formation than the synthetic patches that are used. But less chance of infection, rejection or allergy. There is no rhyme or reason to it. Some people have successful surgery with their own tissue and others do not. That is what I am trying to find out. If you get more information on this please let me know because we are researching it now.