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Might have surgery and kind of nervous about side affects
Wed, 05/09/2007 - 15:42I've had epilepsy for 26 years now and have exausted all the meds. and tried the VNS and I still keep on falling down. I went to the University of Florida Shands hospital and they told me that there with surgery "they are caughtiosly optomistic" about the possibility of at least getting my seizures under control, with a small chance of completly getting rid of them. All this time the docs that I've had have been telling me that sergury is not an option. I'll tell you after all the testing I've gone through in the past year I hope that they can do something! I've had four EMU's and even had a MEG Scan. That was something I had never heard of much less had. They have told me that the thing that makes them kind of hesitant is that where they have to operate is in the area of my complex motor skills.
The main thing I'm looking for is just some advice, experiences, results, from people out there. The more the merrier. So PLEASE help me out here. Thanks, Eric
Comments
Re: Re: Whats it like to have your skull cut open???
Submitted by ehcinelli on Wed, 2007-05-09 - 19:51
I have faith in them its just that....well I'm nervous. I worry about my mom, sister and my nephew. There is another factor involved that I forgot to mention. My daughter has epilepsy also, and we know that she got it from me, as I got mine from my dad, who also has epilepsy. I just worry about those people in my life because of the what ifs that are involved.
As for a MEG scan it is like an EEG, CAT scan, and MRI all rolled into one. They put electrodes on your head like an EEG and put you into a vault like room. Then you are put on a table like an MRI. Now this is where it really starts to get diferent. They put this bladder like thing around your head that is filled with liquid helium. The reason for the helium is that thay need to cut down on the electrical interference as your head becomes a super conductor. Instead of using other power sources they use the electrical current thay your brain produces. That is also the reason for the vault. You see the vault is lined with copper which helps to prevent any external electrical "noise". It is very new process and there are only a few of these machines in the US. I can't wait to see the results from this test. The surgery all depends on the results of this test. That is all the I know about it, and I may have made a few mistakes in my description but I have done my best, and I hope it helps you out.
You can get some more info. on this by going to the University of Alabama website (thats where I had my test done). Good Luck, Eric
Re: Re: Re: Whats it like to have your skull cut open???
Submitted by tuckster on Wed, 2007-05-09 - 20:57
It must be hard with all the family involved but think if you are much better after surgery the possibilites for your daughter would be great. I would love to know how the results turned out Our doctors here in Aussie think they dont need to do this MEG test as the logistics and cost would be enormous but I am really interested as this is the only thing we havent done I was under the impression it was still very new and in research mode!email anytime dltucker@optusnet.com.au and let us know how you get on Good Luck we'll keep you and the family in our prayers
Re: Whats it like to have your skull cut open???
Submitted by tuckster on Wed, 2007-05-09 - 19:25
I think things are changing all the time maybe this is why they said no surgery before My 12 year old son is due for surgery in 11 weeks and he is nearly looking forward to it as a chance to get on top of his seizures The doctors here in Australia are very cautious about surgery and if you have it offered to you I think there is a good chance it will work i guess you just have to do a little research and have faith in your neurosurgeon!!!! What was the MEG test like we dont have it here yet?