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  #1  
Old 07-20-2011, 11:26 AM
hypnoticsean hypnoticsean is offline
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Default ARGGHHH!!!!! Not another OP!!!!!

After an appt this morning with the Prof' that has looked after my E' for the majority of my adult life, he came to the conclusion that to chop and change AED's hasn't been at all beneficiall for sz control. I had a r/s temperol lobectomy in 1999, but not all of the damaged section could be removed. In his opinion now because of the advances of imagaging, theatre technology etc, he feels it would be worth it for the rest to now be finally taken away. As you can all appretiate this came as quite a shock having to yet again having to go through VEEG, PET scan, sub dural stips etc. All this would have to take place in an alternative specialist unit 200 miles away. My Q' for you all WOULD YOU GO FOR IT????????????????? I'm in frame of mind.
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Old 07-20-2011, 12:17 PM
lor lor is offline
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hypno, How long is the majority of your life? Is your epilepsy litterally bothering you more than ever? What I am thinking of is just my situation. I had tonic clonics every few weeks but complex partials every week. That's alot to me (but I bet not allot here)because of all the stuff that comes with E (& I hated chewed up cheeks). The thing is, if you haven't tried every med., there still might be a med. out there that works (again if you want to wait). It took 26 years or more to find a med. that controls my tonic clonics. But you might never either. No one can tell you what to do hun and we're not doctors (at least I'm not).
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Old 07-20-2011, 01:17 PM
jingle jingle is offline
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I went through it all "again" ..... I expected it to be worth it and it was.
Best wishes for you!
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Old 07-21-2011, 05:36 PM
Tattoo2 Tattoo2 is offline
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What the heck is an alternative specialist unit? That alone gives me great pause! Jeepers! I was at a Comprehensive Center such as it was for my first VEEG and because the staff was not trained and let me stay in complex partial status for nearly a "working day", when my Epileptologist who is a well known published doc mentioned depth electrodes, I went to another Comprehensive Center with a proven track record in this surgery. Not making a shish kabob out of me if they don't even recognize complex partial status. I don't care if they do have the name that will be known throughout the health care world, they do not provide good care, and it is too easy to die under those conditions. They wouldn't care but I sure would. They didn't have the telemetry in the VEEG either That is a MUST! I made a great decision. Name is not what you look at. Quality of outcome is. You have to ask that. I did but I always check things out.
You also mentioned that the "prof" who has been caring for you. Prof? Do you mean teacher/professor as in faculty? Not me! You need a rock solid practitioner. If they occasionally lecture, that takes them away from the patients and interest goes too. When I take my car n for a transmission overhaul, I take it to those people who have done that a lot and can do it well as I do not want to have to bring it back in. May seem a simple analogy but the principle is the same. Alternative? Prof? No way! If it were me I would want completely different set of eyes looking at my brain, my records, and would check their credentials carefully. I do the same when I get my car fixed!2 I have had two VEEGs at two different facilities, and the second one that did my surgery one time had the telemetry I spoke of. That is a Must! Good luck and keep us posted. I have reservations. Tattoo

Last edited by Tattoo2; 07-21-2011 at 05:37 PM. Reason: Spell checker didn't return from vacation!
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Old 07-21-2011, 08:35 PM
satman next generation satman next generation is offline
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Wowsers, I have to say, I side with Lor and Tattoo. Just how much are you presently impaired? How much is this presently affecting the quality of your life? Have you looked into all other "noninvasive" options? As I'm sure you're well aware, there is always risk involved with any surgery and there is rarely ever any guarantee. Especially when slicing into the head. I like to "err on the side of caution" when surgery is involved.
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Old 07-21-2011, 11:27 PM
howdydave howdydave is offline
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What sort of an improvement have you seen since your surgery?

Is your current situation livable?

Quality of life is an isue that you alone can decide.
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Old 07-22-2011, 09:43 AM
hypnoticsean hypnoticsean is offline
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With regards to everyone that has currently replied to my post I'll try to answer them in order if thats ok with you guys? In my early 40's and multiple sz's daily, I've tried or tested every AED that is currently on the market. With regards to a 'specialist unit' for my last op I had to travel to London for VEEG & telemetry, PET scan plus depth electrodes, so I know what to expect. Even a VNS total failure, these results are then sent back to the surgical team at my home location, for the 'E' Professer and surgeon.

Life Quality is pretty pathetic because as you all know 'E' can be such a hinderance and others are just ignorant!!!!!!!!!!! The only thing that really bothers me at the mo is that since my first op, I was told all my lesion could not be removed as it was deemed to risky, so just live with it!!!!!! At evey appt' now for the past 12yrs I've said why cant you just get rid of that last bit and always had the same answer TOO RISKY!!!!! Then on this appt' accompanied with my girlfriend, just mentioned as per normal, WHAM yeah go for it, wasn't what I expected or ever thought I'd hear, pardon the pun still can't quite get my head around it.
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Old 07-22-2011, 11:07 AM
Porkette Porkette is offline
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Hi Sean,

I've had 2 surgeries to help reduce my sz. because AED's can't control them. I'm now looking into having gamma knife surgery done where you are in and out of the hospital the same day unless your body receives to much radiation then you have to stay overnight.

You need to ask yourself the following questions:

Are your sz. getting better or getting worse and more frequent?

What are the chances of the surgery helping and what are the risks?

Will this surgery cause scar tissue that could cause sz.?

How would you feel being off AED's or having a reduced amount of
AED's. ?

Would you be able to be more independent and not have to have others
help you out ex. take you to work.


I have looked at all the AED's I've taken and how they haven't helped me that much and how they have messed up my digestive system and my
blood count causing me to almost bleed to death and that's when I said enough of this so I'm going to look into having surgery again. Wishing you well and May God Bless You!

Sue
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Old 07-22-2011, 04:17 PM
howdydave howdydave is offline
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Howdy Sean!

I have serious questions about your neuro...

If all of your lesions could not be removed, why in the world would he have suggested surgery in the first place?

If your doc said it's "too risky" he is probably talking about causing serious problems to your perception and recognition of auditory stimuli, memory, and speech. Personally, I would prefer not having to relearn English all over again.

Personally, I would prefer remembering my personal history, friends and simple things like how to dress myself.

It's all a personal call...
How much is one willing to risk losing for the chance of being seizure free.

There comes a point where the risks outweigh the benefit.
This point is different for each person.
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Last edited by howdydave; 07-23-2011 at 02:15 AM.
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  #10  
Old 07-23-2011, 12:58 AM
Tattoo2 Tattoo2 is offline
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I just wanted to clarify that it is not having surgery that I have reservations about in this case. I am thankful I had surgery and have not lost consciousness n 12 years. I am concerned about the quality of place you are, may be going to, and the expertise of those you are now seeing. I would want a second opinion at this point. it is your life and the only one and the brain you have. Some have asked about your quality of life. The meds do take their toll for sure. No doubt! For me, the goal was NO seizures or as close as I could come to that. Seizures begat seizures as we have always heard do, and because they do worsen over time as we all know, my brain would be permanently affected. I didn't want that. My first epileptologist told me that I would have better outcome with surgery than the VNS. He was probably right, and I think you mentioned that the VNS didn't help you much. I do not agree with the notion that surgery is an option only if they can remove it all. In my case I do now have it on the left side too but the right was always the side in question. My artist of a neurosurgeon thoroughly removed the epileptogenic tissue from the right side and what was on the left is controlled by a very small dose of one med. The left focus no longer has the right focus to communicate with so if I have an aura, it stays that focused and does not spread. That is a rare occurrance though. I was not one of those who as going to be satisfied with having seizures to impact my brain if I could do something about it. AS in all illnesses, the goal is wellness and this was not different. I m still the same person I was but I know me without the meds now and I like who I am very much too. I am moving forward. I hope you get a second opinion from a board certified epileptologist as to what options will be best for you. Good luck. Tattoo
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