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Thread: very upset after surgry

  1. #11
    Community Member tigerchef1969's Avatar
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    Thx everyone i missed u all and wish all of u a happy safe 4th of july

  2. #12
    Community Member Diandra's Avatar
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    hi jeff, i am new to this forum...i don't have epilepsy but have had seizures from lyme disease. i just wanted to say i am sorry for the awful losses you are experiencing. i cannot imagine going through that surgery and come out losing so much function and STILL having seizures. I will pray, that in time your vision and ability to walk are restored and that your headaches will vanish and left hand will be fully functional again. I really hope you have good support from family and friends and the nursing home you are at. All my best, Diandra

  3. #13
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    HI Jeff, As far as I know my surgery only involved the right temporal lobe or really the mesial or middle area which is behind the actual temporal lobe. They find other areas of damage when they get in, in case all didn't show up on exams. If the tissue were tumor-like or more solid, they'd be able to see it clearly, but in the case of epileptogenic tissue, I can see it being more able to be detected after the skull is open and brain exposed. Using the electrocortical (sp) device to detect it before removing. This also lets them know where they are re functions if you are awake to respond as is the case in many surgeries. I was asleep for my surgery. I was told they they found lots of damaged tissue when they got in so in your case they may have been doing the same thing in trying to remove the damaged tissue the first time as in my case so you have a better chance for seizure free status and to make the surgery worth all you put into it the first time. This is too big a deal not to get it all if possible the first time.
    That's sort of how mine was done. That allows them to remove much of the epileptogenic tissue so they do not have to go back in again which happens in too many cases. Now re the peripheral vision, I do not recall being told I could lose vision, but I feel sure it was in the fine print of the consent. I know from my work experience that all things possible are in the consent to make us aware of all possibilities even though most never happen. I am not aware of my parietal lobe being involved, but a couple of years ago, I was getting my eyes examined for glasses, and the optometist wanted me to see an opthalmologist. When I saw the opthalmologist, she did a peripheral vision test and discovered that I have areas where my peripheral vision is less than it should be. I was not at all aware of it. They call those areas cuts, but they are not at all gone!! The word cuts is incorrect!!!! I see from my peripheral vision, but I guess it is not as full as it was although it causes me no difficulty that I am aware of. There are two areas, one on each side in the lower corner like a quarter of a pie from both sides. I still see well, but the deficit is there. It does not bother me however as I have worn glasses since I was 7 years old. The opthalmologist said it must be from my surgery and also said they did a good job. She did an MRI related to the visual apparatus to see why the "cuts" were there etc. Do take into consideration that I had surgery in 1998 and this peripheral vision issue was not discovered until about 2010. I was totally unaware.
    Re the parietal lobe in epilepsy surgery, I was not aware that it is also an area for epilepsy surgery until you mentioned it and I did some research.
    I found an article written by docs from the Epilepsy Center that did my own surgery re the parietal lobe surgery so it must be a very real procedure. It also mentions peripheral vision, but as I said, it has not bothered me. There are no black areas. No holes etc. What I don't understand is what's up with your not being able to walk? Did you possibly have a small stroke? What do they say has affected your ability to walk?
    See if you can find out what your plan of care and prognosis is for these issues. Keep us posted. Tattoo

    1-http://www.google.com/url?sa=t&rct=j&q=parietal%20lobectomy&source=web&c d=4&sqi=2&ved=0CGIQFjAD&url=http://www.jkns.or.kr/htm/pdfdown.asp?pn%3D0042004137&ei=ENTwT5qrBo-Q8wTFxdWLDQ&usg=AFQjCNGUTfxlOaYhvzqa1lTx8rO75iVOzg

    2- http://epilepsy.med.nyu.edu/epilepsy...-lobe-epilepsy

  4. #14
    Community Member tigerchef1969's Avatar
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    my neuro seurogeoen and neorgolist had 2 therios 1 was my vision the other was my dilantin which i tototally disagreeded with cause not once did they mention the removal of part of my parietal lobe plus i have been at a a level of 36 before and walking fine!!!!!!!!!!!!

  5. #15
    Distinguished Community Member lor's Avatar
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    I don't know what to say, except, I'm Sorry hun.
    Lorraine (lor)

  6. #16
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    When my Tegretol level was too high, it caused me to lose balance and walk into walls instead of walking straight or not make the corners clean etc. Sounds like this is similar to what you are experiencing rather than what it sounded like. It sounded like you were not able to move your legs, stand up, and support yourself while on your feet etc. That is a motor issue too, but yours could be medication. The doc took me off Dilantin in the 70's as Tegretol was new then. You also have to consider that your brain is newly post op so medicines may affect you differently now. I'd expect that. By the way, how are your seizures? Have you had any since surgery and are they are severe etc? I hope you have not had any. Why are you still on Dilantin when your seizure were not controlled so that you were a candidate for surgery? We have better ones now. Tattoo

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