Hi, Guys,

Thank you to all who have helped me by answering my earlier questions.

At this point, I have an appointment with a neurologist in Dallas to discuss my case. I am trying to find out if I am a candidate for the epilepsy surgery.

Right now, I am trying to find out any questions that I should ask on that initial meeting with the doctor. I have done some research, but the seizures have been so bad that I am pretty dingy and my short term memory is almost nil. I would prefer to go into the meeting with the questions written down on paper.

I'd appreciate any input you can give me, and would love to hear from those who have had the surgery, both good things and bad. I want to be truly prepared.

Oh, yeah... One more question... Do they shave your head? It may sound like a trivial point, but it is one that I'd have to psych myself up for! If it meant not having seizures, they could have the hair! Shoot, I'd wear a bag over my head if that is what it would take!

Anyway, thanks in advance.

Sissylou

Oh Sissy, it's good to see you again! I am so sorry you've been having a rough time.

With the VNS (right?) I "think" (and I'm so very far from an expert) some of the things about your surgery will be different. At least the prep will be different.

The single thing I can say with total assurance is about the head shaving - lol.

Some hospitals do and some hospitals don't.

My incision was for temporal lobe and just the left side of my head was shaved. An internet friend also had the same left temporal lobe surgery at a different hospital and her entire head was shaved..... It sure depends on the hospital. Just ask. And don't worry. In the world today things like a bald head ARE accepted.

I know several other members of NeuroTalk have had the surgery and they will be here soon to talk to you and offer assistance.
And we will hold you in our hearts and prayers.

Hi Sissylou,
I've had brain surgery twice and each time they had to shave my head. The first time I had surgery it was for a veeg (video e.e.g.) where they placed 7 depth electrodes directly on my brain. The reason why they did this was to pinpoint the exact location on my brain to where the sz. were coming from. The second time I had surgery they did ultra sound brain surgery and I had to stay awake for the surgery except for when they cut into my head the reason I had to stay awake is because they were doing an e.e.g. having me read flash cards, as well as pricking me with a pin to be sure I could still feel thing. My surgeon removed 75% of my right temporal lobe and all of my right hippocampus. The worst part of the surgery for me was getting 5 shots across the forehead to numb me from the shoulders to the top of my head and then I had 42 staples in my head and it hurt like crazy when it came time to take them out. One reason you might be having memory loss is do to the AED's (seizure meds) you take or it could be that the hippocampus of your brain is shrinking and getting hard from the sz. This is what happened to me and that's why they removed the right hippocampus. Today they have much safer forms of surgery you might want to ask your Dr. about having gamma knife surgery done. There's no knife involved it's using high frequency radio waves to destroy the problem in the brain, it's also used to shrink brain tumors. Often a person goes home the same day they have surgery unless they have received to much radiation. Some things you might want to ask your Dr. are...
Is there any risks such as loss of sight?
Will the surgery stop or just reduce your sz.
How much testings has to be done before the surgery and what tests are
they?
Will the surgery cause more short term memory loss?
How long will I stay in the hospital after surgery?
Can you reduce or stop your AED's if the sz. stop?

These are a few questions you might want to ask. I know I had to have a angiogram, stress test, MRI, SPECT scan, PET scan, CT scan, wada test, bleeding time test, along with neuropsychological testing done to be sure I could handle the surgery and the possible after affects. What bothered me the most after surgery is not being able to lay on my right side for 6 months and I was exhausted and had wicked back pain do to the surgery. I also was on a soft food diet for awhile because it hurt to chew food. I couldn't get my head wet for at least 3 possilbly 6 months and I had 7 follow up visits after surgery it took a full yr. for complete recovery but I was back to work in 2 months after surgery. Here's wishing you well and May God Bless You!

Sue

Sissylou, I'm in the same boat as you. I'm waiting to see if I'm a candidate for surgery. I would like to see what people say too.

Hi Lor I sure was hoping you would check in. Bless your big heart!

If you don't mind me asking ......
What have your doctors and surgeon been saying about your VNS?
What tests have you had? What tests can't you have?
How do things look so far?

Sue, I had a 4 1/2 hour neuropsych test before the first surgery and again exactly 6 months after.
It was done the third time exactly 6 months after my second surgery.
IMHO the neuropsych testing is more difficult than brain surgery

I was inform by my neuro that the next step for me is to have surgery just like you two. Which I have pretty much decided to do. I will be going to Dallas as you are Sissylou. My VNS has helped alot but he feels I need to go ahead with the surgery, but just isn't pushing me, same with the rest of my dear family. Recently I have having more tonic-clonic, which as in earlier days I never had, I was only having small petit mals

Will someone inform me on the side effects they had and when they had the surgery?

Thanks for you time and good luck to you.

Darlene

Please see my separate post for full description of my left temporal resection.

If your primary seizure type is generalized, surgeons would aim to separate the left and right hemispheres. Therefore, you would then have partial seizures, but no secondarily-generalization of elctrical activity. There are separate effects of this type of surgery. The main issue that pops into my mind is many mannerisms seeming to come from another person. That would be a challenge to adjust to, imo.

Best wishes to you!

Shez

Just a quick note to all who have replied.

I appreciate your input so much and hope to be able to put it all to good use.
I am always open to hearing more is you think of anything else!

Thanks, again,
Sissylou

Hello Sissylou,
So when was, or is your surgery? If you haven't had it yet, I have some info for you. I've had 2 major brain surgeries (right temporal lobectomy, RNS implant), and I've also had the VNS for 11 years inbetween surgeries. JUst let me know what you need to know if you have yet to have the surgery.
Sincerely
shawn33