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Old 03-23-2012, 06:15 PM   #1
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Lightbulb Mesio-Temporal Sclerosis

I am a 49 year old male and I was recently diagnosed with Mesio-Temporal Sclerosis. I am having alot of trouble find info on posible treatment. I have seen alot of good data with the Gama Knife but I don't know....can anyone help?

 
Old 03-23-2012, 07:01 PM   #2
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Re: Mesio-Temporal Sclerosis

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Originally Posted by C Mac View Post
I am a 49 year old male and I was recently diagnosed with Mesio-Temporal Sclerosis. I am having alot of trouble find info on posible treatment. I have seen alot of good data with the Gama Knife but I don't know....can anyone help?
Hi there, maybe your not finding the correct information because your spelling it wrong. I was also diagnosed with Mesial Temporal Sclerosis (mine was the right anterior lobe) and the treatment for me was brain surgery 5 years ago. I will be 5 years seizure free next month, and very happy I decided to have it done. Now Im not sure what options the neurologist have given you, are you a candidate for surgery or not? Mesial Sclerosis means Dead brain tissue. Mine was caused by a head injury I had at 6 years of age, and neurologist didnt find it until I was 17 years old. medications are unable to penetrate this area making the person vulnarable to seizures and recurences. This is why I asked for the surgery. I will gladly answer any of your questions, and help. What medications you take and how often you get the spells?

Laura

 
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Old 03-25-2012, 03:25 PM   #3
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Re: Mesio-Temporal Sclerosis

Hi Laura
I have searched it both ways and found some info....I have an appt with a nuerosurgen on Friday. So I am trying to get as much info as posible. I have looked at the gama knife procedure, but it does not have a very good success rate. So it looks like I will have Brain Surgery (lubectomy??). Is this what you had? What was the recovery like...how long until you returned to a somewhat normal life?
Thanks
Chris

 
Old 03-25-2012, 04:14 PM   #4
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Re: Mesio-Temporal Sclerosis

Hi Laura

Sorry, I am new at this. I believe my issues stem from an accident when I was between the age of 6 and 10. I was riding my bike and the front wheel came off my bike. I landed on my head. I don't remember anything except the wheel coming off and then coming to with my mother putting ice on my face. I don't know if that is what caused my issues, but it was the only thing I could think of...I did not start having simply complex siezures until 2 years ago. They will come and go. I can have a siezure every day and sometimes 2 or 3 in a day for months then have none for months. An MRI revealed a "Mesio-Temporal Screrosis" on one side of my brain. I don't know if there is a difference between "Mesio-Temporal Sclerosis" and "Mesial Temporal Sclerosis". My Nerulogist said, it is "Mesio-Temporal Sclerosis and it (the sclerosis) needs to be removed or it could spread to the other side of my brain. He said the procedure could to done the Elliot Hospital (where I was diagnosed) but he recommends it be done at a teaching hosital in Boston. My appt is with the chief neurosurgen at Tufts Medical Center in Boston.

I am taking 500mg of Keppra twice a day...it makes me tired and sometimes I feel depressed.

It is weird to me that it took 40 years or more for this to surface in the form of seizures and impending brain surgery.

Can you tell me about your surgery? How long were you in recovery... well until you were able to resume a normal routine? Did you have any un-expected side effects?

Thanks for taking the time with me....

Chris

 
Old 03-25-2012, 08:41 PM   #5
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Re: Mesio-Temporal Sclerosis

Hi Chris,
Sorry Im getting online now, but had a very busy weekend with my family and daughter. There sure is alot of information I can try and help you with. For starters my sclerosis was on the right side, and on the frontal lobe. I startign having my seizures at age 11 but wasn't diagnosed until I had a grand mal at age 17 and placed on meds. (been on atleast 7 different meds) and Im currently only taking keppra 3000mg a day but going down to 2000mg now. Meds were no help so I had to undergo Right Anterior temporal Lobectomy. Oh man I did so much research in 2 years before actually going under the knife. I was very lucky not to need certain exams since my sclerosis was located away from major brain areas so i didnt do all test but have read about them all. For example i never did the Wada test which is mostly always done before they operate you so they are aware of the location and make sure they not going near those area. The right temporal lobe tends to be much easier to operate and have less side effects post surgery. i had right temporal Lobectomy and my neuro-surgeon only cut a about 6 inches on the side of my head and had no need to shave my hair completetly which i was afraid of. Im going to give you some tips to follow and will talk alot, so if you have soem memory problems write them down.
I used to have seizures as much as you and even worse when under stress and during menstrual cycles, due to the hormonal changes. thankfully my nighmare its over and now i want to help you end yours. sorry If I seen all over the place but Im trying to answer as much as possible without confussign you.
Before undergoing this surgery you will undergo many test to make sure they don't touch your motor skills or hearing or speech areas. some individuals even have the surgery while completly awake, but these are rare now. Once all test are back and the neuro surgeon feels he has obtain as much as he needs he will discuss your procedure and and your recovery.
Now Im going to talk about my personal experience. My surgery was 8 and ahalf hours long. Neurologist told me ahead of time I had an 80% change of being seizure free and meds free after 5-10 years post surgery and that i would loose the top left quadrent vision on my left eye, since the operation was on my right side, but I knew before hand, and with time you dont even notice it it was minor but my only side effect post surgery and worth my seizure freedom. Now after surgery was completed I stayed in the hospital for 9 days but only because I eneded up with a small fever and they kept me on antibiotics, but had nothing to do with the actual surgery, I was just in alot of pain. Yes according to my husband (since I dont recall much after my surgery) I would only hit my IV needle and the nurse knew i wanted pain killers since the headache was very hard the first 2 days. After those 3 days i began to sit up and talk to my family members. I was only eatting soft foods. I went home on the 9th day but i was already tolorate to the pain that I took no pain killers at home. At home you must try and sleep with your head abve your sholders to try and avoid blood cloths, and bleeding so either you prop yourself up with pillows or lift the bed up on one side. Well we will discuss recovery later. I was feelign much better after 2 weeks and your allowed to return to work after 2-3 weeks depeding on your recovery but most people get moving with their life fast. I was lucky i didnt need to get back to work so i stayed home relaxing, and took it easy for the first 2 months. After the 3rd month I was feeling much better and back to my old self. I even went swiming. Also I had some memory problems before my surgery, but after my surgery i had much better memory, and even recalled things I couldn't before. For me it was the best decision I could have taken, and i reccomend other to do the same if possible.
Now your first step is to write down all the questions you want your neuro-surgeon to answer you so you dont forget none. He will also give you many papers and disscuss all the procedure. Ill cut it here for today so you can digest this information, but Ill continue writting and ask me as many questions as you want. remember not all will undergo the same surgeries or side effects as others but we sure help you understand it and prepare as best you can.

good night,
Laura

Last edited by 030free; 03-25-2012 at 08:43 PM.

 
Old 03-27-2012, 02:46 PM   #6
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Re: Mesio-Temporal Sclerosis

Hi Laura
Thanks for getting back to me. I have started developing some strange rash on my hands. The Dr. took a culture and said it was a staf infection. She prescribed Bactrim lotion (an antibiotic cream). It is not working...so I am now trying to find a dermotalogist. Did you have any wierd rashes that you remember?

 
Old 03-27-2012, 04:33 PM   #7
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Re: Mesio-Temporal Sclerosis

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Originally Posted by C Mac View Post
Hi Laura
Thanks for getting back to me. I have started developing some strange rash on my hands. The Dr. took a culture and said it was a staf infection. She prescribed Bactrim lotion (an antibiotic cream). It is not working...so I am now trying to find a dermotalogist. Did you have any wierd rashes that you remember?
No the rashes are not related to your seaizures or the keppra. You must of touched something infected or a plant, but I never had any rashes, nor other epileptic people I know. I dont believe there is a connection so go see the Derm and see what he says, best of luck to you with that, and let me know what the neuro-surgeon says..

 
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