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Amygdalahippocampectomy in 10 days

My amygdalahippocampectomy happens in tens and I am getting to that soul searching point. I have over analyzed, over stressed, over emotionalized both the pros and cons of doing the surgery. Medication has never worked effectively as was evident two weeks ago as I railed my bmw into the side median of the freeway while having a seizure. Luckily for my aura's, I was able to react quick enough to get off the road without hurting anyone else. That's three cars and seven years! I come to this forum to hear stories from those that have had the type of surgery I will be having. *What types of seizures do/did you have *Did the surgery take your seizure away *Did you get off the drugs (very important) *How did you feel after the surgery-alert? Memory? Languange? *If you had any complications, what were they. Do you still have them or did they eventually get better/go away with time. *Did you take/or were you encourage to take any rehabilitation classes for memory or speech? Here is a little about me. *I have complex partial seizure and have had them since childhood. *I currantly take 3000mg of keppra and 500mg of zonogran *I am very active and hold a middle management position with a commericial printing company-50 hours a week *I drive and I expect to continue to drive after surgery (maybe not for the first month or two) *This surgury is not to slow me down. The reason for the surgery is to stop the seizure but to also get me off the awful medication. Your thoughts (hopefully positive) would be appreciative. Best Regards.

Comments

Re: Amygdalahippocampectomy in 10 days

Rob,

I've detailed my surgical experience here:

http://users.eastlink.ca/~kehoe/

I think it may offer some insight on many of your questions.

Kevin

Re: Re: Amygdalahippocampectomy in 10 days

Kevin,

Thank you for sharing your detailed history with me. It was very encouraging to read your story.

Re: Amygdalahippocampectomy in 10 days

Rob, I can tell you from my experience that the surgery greatly improved my quality of life. I had partial and complex partials. I tried all the meds but never found one that worked. Since surgery I only take Tegretol twice a day, which has no side-effects that I can tell. The result for me is that my seizures are under control and I have a life, promising career and great family. All of this was possible due to surgery. I had no loss of memory or speech and hence no rehab was needed. Besides the scar in my hairline you would not know. I understand your desire to be off meds completely and hope you will, but understand that you might not get off them altogether. You may be like me and find that one with minimal side-effects does the job. I spend 3 seconds in the am taking a pill and 3 in the pm for a total of 6 seconds a day dealing with my epilepsy. This means that for the rest of the day I never think about epilepsy all because of surgery. I wish you the best.

Re: Re: Amygdalahippocampectomy in 10 days

Memory and speech have been a concern of mine. Was your surgery done on the right or left side? My doctor commented that I did well in regards to memory retention and recall during my neurophyscological test and would come out of surgery doing fine. I know that no one case is the same the any person going through this type of surgery but it is still reassuring to hear that you came through with none of those losses. Thank you for sharing.

Best Regards.

Re: Amygdalahippocampectomy in 10 days

*What types of seizures do/did you have
15/20 complex partial/month.

*Did the surgery take your seizure away
Yes, last seizure two days before surgery

*Did you get off the drugs (very important)
Completely off medication by two years after surgery

*How did you feel after the surgery-alert? Memory? Languange?
First week, forget it. If the pain doesnt shut you up, the painkillers will.

*If you had any complications, what were they. Do you still have them or did they eventually get better/go away with time.
Skewed vision (trained myself to see correctly by reading small print, started to improve gradually, back to peripheral vision skewed only by about 3 months after surgery and fuly back to normal by 6 moths after surgery.

*Did you take/or were you encourage to take any rehabilitation classes
for memory or speech?

No, but it would be useful. I have personally found cod liver oil to be beneficial for memory and mood improvement.

Overall, it has been life improving for me, but not without social difficulties which has taken me time to overcome. But 15 years seizure free, it was well worth the pain and complications.

Re: Amygdalahippocampectomy in 10 days

Hi Ewan,

First of all I cannot understand that you are driving if you still have seizures. You can drive yourself death but second of all who do you take with you into death? So I am sorry but that is something I don't understand and if I am right it isn't legal to drive while you have seizures, so if you have an accident all the costs are for you.

Having said that I am also in the traject of surgery. The first time they wanted to operate on my it stopped when the wada test showed that I had on the left side of my brain less memory than was needed to operate. They have put an VNS in me (vagal nerve stimulator) and with that stimulator they are now trying to get rid of my medicines, because the barbiturates that I take are the same that they used for the WADA test, and the thought is that i didn't pass the test (by one point) because of that. Taking those medicines off without a stimulator was to risky and therefore they implanted the stimulator. Now I am building down the medicines very carefully and in a year time I have to get rid of them, than take the test again and maybe the operation on the right temporal lobe.

By the way I have seizures since I was three years old (I am now 47) I never let the seizures stop me to do what I love most (training dogs in obedience) and competed in world and european championships. I have about 30 seizures a month so the surgery isn't an option but a must, I have no other choice. (excuse my english writing, i am dutch so if i make mistakes sorry for that)I am taking 1600 mg Tegretol and 225 mg Fenobarbital, 200 mg Vimpat and some diazepam when needed. All those medicines destroy my body and all internal organs so therefore I múst get rid of the medicines.

But if I were you I wouldn't drive anymore until at least one year after your surgery, I know that is terrible for you but what is worse? Driving a child into the death, or not driving at all?

With regards,

Silver

Re: Re: Amygdalahippocampectomy in 10 days

Hell Rob,
I read your original mail a few weeks ago, and have been wondering how you're doing--I hope things are turning out well for you. I also curently share some of the questions you posted before your surgery. I have complex partials in my left temporal lobe which sometimes spread to become generalized seizures. I am in the process of scheduling surgery, also an amygdalohippocampectomy of my LTL at mayo clinic. Did you have surgery on the R or L TL? If you did have surgery on the LTL, have you noticed any changes in short term memory? How was your experience in surgery? I'm a bit nervous myself, and worry about changes to episodic and verbal memory. Have you noticed any large changes in such (short term) memory? It might be a little soon for this question, I guess. I just wanted to wish you good luck with recovery--someone recommended playing scrabble on line for working memory after surgery. Any advice or warnings you have regarding your experience thus far, I'm open ears.
All the best to you,
KR

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