Looking ahead to surgery, but fear is setting in.

[Fscene8]

I've given AED meds more than a fair chance: Tegretol, Phenobarbital, Keppra, Zonegran, Dilantin, Neurontin, Lamictal, Depakote, Topamax, Lyrica, Vimpat, Trileptal.

Trileptal has been the lesser of the evil side effects. That's why it still remains. But if Onfi can't improve its effectiveness then surgery is my option.
_________________________________________________________________

You're a hero, lol. I've never seen anyone with that medication experience.
My neurologist told me to take Trileptal and Tegretol (I forgot the amount since I met him this morning) together with small amount of Lamictal.
Lamictal is crap, gives me death thoughts and bad memory.


What are your experiences with Trileptal and Tegretol ?
Could you please tell me side-effects of both?
Thanks in advance

 

[BIGMAN131307]

Now, in your situation.. something I can suggest is to ask your neurologist if the gamma knife type surgery is going to be an optional surgery. Another suggestion is to ask what other surgery options are available for your case.

The hospital that I would have my surgery at offers both surgery & gamma knife surgery. I'd prefer going the gamma knife root if possible. My seizures originate in one location, which makes me a good candidate for either. But my neurologist is more pro-surgery.
So before I do anything I want a new round of video EEG. This would be in my favor.

If you do not trust this doctor's opinion you can get a second opinion from another. A good doctor never likes giving the option of surgery unless it is a necessary need -- that is always something I have paid attention to when shopping for specialists; just my opinion from experience.

He's not "bad", just too "doctory". He's one of those doctors that may be too smart for their own good. When I asked about gamma knife surgery over a year ago he went into a tizzy. Telling me it wasn't a proper procedure, or something like that. A few months later my primary doctor told me that my neurologist was at a convention promoting it. Overall he's not a bad neurologist, it's that the previous neurologist I had was excellent.

As you can see they ask if you tried the ketogenic diet instead of you making your mind up on what you want to do.

I am not a good candidate for that diet because I have digestion problems.

What are your experiences with Trileptal and Tegretol? Could you please tell me side-effects of both?
Thanks in advance

It's been quite a while since I was on Tegretol. I believe I was 18 or 19 when I was taken off it.

Tegretol side effects I remember having were:

swelling of your face (very minor)
depression (everyone with seizures gets depressed)
agitated (very minor)
headache (common with seizures)
tired feeling (common with most AED)
confusion (minor ofter a seizure)
nausea (minor before or after a seizure)
upper stomach pain (minor)
confusion (common after a seizure)
drowsiness (common with most AED)


I've been on Trileptal for twelve years in various combinations.

Trileptal side effects that I experience are:

headache (same)
drowsiness (same)
tired feeling (same)
confusion (same)
depression (same)
agitated (same)
memory problems (common with seizures)
loss of appetite (previous AED caused digestion problems)
upper stomach pain (previous AED caused digestion problems)
upset stomach (previous AED caused digestion problems)
diarrhea (previous AED caused digestion problems)

The worst side effect Trileptal causes me is a skin reaction (severe dry scalp: head, face).
It's like your skin is peeling after a sun tan.
________________________________________

For a comparison:

Prior AED (Depakote, Topamax, Zonegran, Keppra) I have been on did a number on my stomach and digestive system. Which let to kidney stones (still have), gall stones (had gall bladder surgically removed), Irritable Bowel Syndrome, Ulcerative Colitis, etc. While AED Lyrica caused severe night seizures, bloating, and weight gain. Finally AED Vimpat caused a bad rash on my arms, legs, and stomach.


I hope that helps.

 

[BIGMAN131307]

I've been on Onfi for a few weeks with my Trileptal. My seizures haven't gone away, that was a given. They haven't gotten any worse. But I do experience some side effects caused by the Onfi. The main one being more tired at various times of the day. Which in itself is a real PITA for me. The best way I can explain it is like being an Insomniac that has Narcolepsy. It's weird to say it but true. I'm also getting agitated more easily at times. Not violent, just moody.

Well Onfi is the last "new" AED I'll try before my next VEEG, then possible surgery.
___________________

My next neurologist appointment is around June. That's when I'm supposed to go in for my VEEG. Before any talk about possible surgery, I'm going to demand to see my VEEG footage, scans, etc. I want to see and hear in full detail what my brain is doing during my seizures.

Afterwards I am planning to inquire about the Gamma Knife Surgery. I would like to find out if that is a viable option for my situation. I'm still uncertain about having my skull cracked open like a coconut. From what I have read and heard the Gamma Knife Surgery is as effective or even better at times. It could go the other way as well.

This is a time I wished my previous neurologist was still here. He would be straight with every detail, no B.S.
___________________________________

 

[Bernard]

Hi BigMan, nice to see you around again. Sorry I missed this thread until now. I don't have much to add to what's been said already, but did want to say hello.

...
I am not a good candidate for that diet because I have digestion problems.
...

You might also try contacting Paolo and see if he can get you some of his ALAC supplement.

 

[suebear]

The hospital that I would have my surgery at offers both surgery & gamma knife surgery. I'd prefer going the gamma knife root if possible. My seizures originate in one location, which makes me a good candidate for either. But my neurologist is more pro-surgery.
So before I do anything I want a new round of video EEG. This would be in my favor.

Of course having seizures in one location is a good thing, I can agree with you on that prediction. What I question is someone who likes to perform surgery. That gives me a bit of anxiety in itself as no surgeon should want to do brain surgery unless all other necessary tools have been exhausted (medication, diet, etc)

It would seem to me there are some open ended questions still that have not yet been answered so you have a right to be nervous on this matter and I do not blame you for feeling the way you do. As for a doctor stating it is not proper procedure, I would raise my eyebrow and begin to wonder what the hell he is referring to. A patient has the right to exhaust all conditions before a doctor even moves onto the realm of surgery consideration; that is normal protocol for all surgeons whether they are chiropractic, heart, bone or neurological. The difference as I said there are some doctors who are perfectionists and do things by the book and follow the oath of medicine and there are other doctors who are surgery happy.

It is quite unfortunate there are surgeons addicted to performing surgery you want to avoid as they do not know the patients they are hurting and tend to get held with liability law suits. You mention you are not a good candidate for this surgery so that also tells me you need to avoid this factor and your need to regroup and find another surgeon who can help your situation since it is obvious this one cannot.

Two things I suggest 1) if you have an EFA (Epilepsy Foundation of America) in your area, phone them to determine who will help or 2) phone the previous doctor who you are not seeing at this time and ask if he can refer you to someone he feels comfortable that can handle your current situation and lead you in the right direction.

When speaking about this matter, I would mention what is happening about the surgery factor and how it feels uncomfortable. Something you can also do is speak with your primary neurologist and ask if he suggests someone else who can be of benefit to you on this matter. Good luck and keep me up to date as you can.

If you'd like I can provide you with two neurosurgeon names off list to review and keep for future use should you wish to use them. Both doctors performed my surgeries; the first doctor was involved with my temporal resection and the second performed both surgeries (VNS and DBS). Let me know if you are interested and I will send you contact information.

 

[BIGMAN131307]

When speaking about this matter, I would mention what is happening about the surgery factor and how it feels uncomfortable. Something you can also do is speak with your primary neurologist and ask if he suggests someone else who can be of benefit to you on this matter. Good luck and keep me up to date as you can.

The pro-surgery was from my primary neurologist.
__________________________________________________

Update:

I've had my second round VEEG monitoring session. and MRI. A month ago I reviewed the test results with my primary neurologist. My previous VEEG monitoring session and recent one match up. The seizure focal point is the same, and hasn't gotten any bigger. I only have the one localized lesion in my Right Temporal Lobe. All my vital functions are located on the other side.

The other day I met with the neurosurgeon. He was very pleasant and informed on my status. He answered all my questions. He believes I have a very good chance of being seizure free after surgery. No promises but the odds are in my favor. With this information
I feel a little more confident in surgery. I'm still worried about having someone mess with my head. But a seizure free outcome, is calming my nerves some.

At this time my surgery may be sometime this May. What day is to be determined in the coming weeks.

 

[arnie]

I'm glad things seem to be progressing. It's very fortunate that you seem to have a specific focus and that it's away from the areas that control the important stuff. I had a neurologist who kept saying I should have surgery, but I have no definite focal point and simply did not want to risk it for what seemed to me a pretty dubious outcome. I have a VNS implanted now, which is as much surgical intervention as will probably be appropriate for me at this point. As you know, there are a couple of threads here about people who have had good outcomes with their surgeries. Best of luck with the continuing workup process. Keep us posted!

 

[BIGMAN131307]

It looks my surgery will be May 13th.

Although feel a little more confident in surgery. I'm still worried about having someone mess with my head. But a seizure free outcome is what I'm hoping for.

Family members are trying to help me get ready. After surgery they will ask me questions about myself, them, etc. That's to make sure I'm in my right mind. I'm even going to mix a CD for them to play for me before & after surgery.

If all goes well, I'll be able to move on to a better future. Possibly make a better life for myself. Drive, work, school, travel, etc.

 

[rx4brdm]

Stay strong, the surgery on my left TL was the best decision I ever made. I can't say I really cared for the ten days in the hospital after the surgery or extremely sever headache that continued for a month afterward. The first three months after were a little difficult but the outcome...

Finally letting a complete car geek get his license at 28 years of age was probably the second best gift I ever received.

Don't let my experience scare you, according to my neurologist and neurosurgeon my problems were not a common occurrence.

I wish you the best of luck.

 

[Cint]

It looks my surgery will be May 13th.

Although feel a little more confident in surgery. I'm still worried about having someone mess with my head. But a seizure free outcome is what I'm hoping for.



If all goes well, I'll be able to move on to a better future. Possibly make a better life for myself. Drive, work, school, travel, etc.

Keeping my fingers crossed for you. I didn't like someone messing with my head, either, but since you are taking the chance, I DO hope you have a much better outcome with brain surgery. May you be seizure-free! Good luck!

 

[qtowngirl]

It looks my surgery will be May 13th.

Although feel a little more confident in surgery. I'm still worried about having someone mess with my head. But a seizure free outcome is what I'm hoping for.
If all goes well, I'll be able to move on to a better future. Possibly make a better life for myself. Drive, work, school, travel, etc.

:clap: SO GOOD TO HEAR!!! now that you have a date you can plan, feels better ey.
i get you on someone messing with your head, but in all honesty someone named epilepsy has already messed with your head for years, and you've decided to introduce them to someone else - their name is brain warrior and hopefully your E is ready for a pouncing!!

proud of you big, a hellish decision to make/accept but you're showing real courage, I WISH YOU ALL THE BEST!!!!!!!!!!!
if you need to talk or have any questions just pm me

ps- driving again is so beautiful!! i leave the house every day even if i don't really have anything to do.

:hugs:

 

[suebear]

If all goes well, I'll be able to move on to a better future. Possibly make a better life for myself. Drive, work, school, travel, etc.

Stay positive and after surgery take things one day at a time. Because brain surgery is considered trauma to the brain it takes minimal six months to recover, in other cases it can be longer it just depends upon a lot. Your doctors will go through all of this with you.

Yes, you are correct, this type of surgery can be quite positive and life changing but please give it time to make those changes happen. I learned after my first surgery when given the dr's orders to recover and lay around they were quite serious. :twocents:

 

[Bernard]

Thanks for the update BM. I am wishing you all the best.

 

[Ruth]

It looks my surgery will be May 13th.

Although feel a little more confident in surgery. I'm still worried about having someone mess with my head. But a seizure free outcome is what I'm hoping for.

Family members are trying to help me get ready. After surgery they will ask me questions about myself, them, etc. That's to make sure I'm in my right mind. I'm even going to mix a CD for them to play for me before & after surgery.

If all goes well, I'll be able to move on to a better future. Possibly make a better life for myself. Drive, work, school, travel, etc.

Hi BIGMAN131307, that is great that you have family support. That is important. You will need it.

I have been on a lot of medicines over the years, since 1949. I have never had surgery. Have you considered a VNS?

It is also important to have a positive attitude. You do!! You have us supporting you.

Soft music is best when you make your CD. I do not know what loud music would do for your brain.

Take care, Ruth :hugs:

 

[CQ:)]

Best of luck with your surgery Bigman,
I agree a positive attitude is really important & also take your time to recover.

 

[BIGMAN131307]

Have you considered a VNS?

I've consider VNS in the past. But it wouldn't help me the way my seizures happen. They come on with no aura or any type of warning. So as a preventative measure it would be a waist. Since my seizures last from 3 to 5 minutes, using it during a
seizure wouldn't happen either.

Soft music is best when you make your CD. I do not know what loud music would do for your brain.

You should check my recent post in the "http://www.coping-with-epilepsy.com/forums/f21/what-you-listening-17907/index30.html" thread.

Those types of songs relax me. I have others that also relax me. But there are some bands that just hit the right mood.
ex: Alter Bridge, Creed, Scott Stapp, Nickelback, Fuel, 3 Doors Down, Stained, etc.

 

[Ruth]

Hi, I know one person who had seizures worse than me. She could not even hold her baby. The VNS worked for her. She did need someone to do the swipe though.

Have you gone to Speber's Auditorium to listen to music, here in the forum? You can listen to whatever music you like. I did not know that Shelley had started a new thread. She and Spencer (Speber) were good friends.

 

[BIGMAN131307]

Have you gone to Speber's Auditorium to listen to music, here in the forum?/QUOTE] I have in the past. But now I try to keep the music that keeps me in a relaxed, calm mood playing.
______________

Went in for testing prior to surgery. Everything looks good. I can see that tunnel in
front of me. I'm just hoping the light at the end leads to somewhere nice.

 

[qtowngirl]

well said bigman, and you will
it's on the 14th right?! my new brain will send you good surgery vibes all day! GOOD LUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

:hugs:

 

[BIGMAN131307]

Thx, I feel the tingling already.


Well to be prepared for the day, I have a mission to complete.

Today I need to cut my hair & shave. Although I'm not going to post a personal photo, I'll post a good substitute.

This is what my general appearance is currently.

Funny thing, this is how the people around view it as.

Why all the fuss? It works for them.

The only thing left will be for them to cue ball my head.