Looking ahead to surgery, but fear is setting in.

[BIGMAN131307]

I'm guy in my mid-thirties, my life is stalled because of my seizures.

I've been away for a while. Been dealing with other medical issues that my Epilepsy meds have caused. That problem has been improving, but my Complex Partial Seizures have not. If anything they been worse at times. I'd usually have 3-4 a month. But in the past 2-3 months I've had about 20. Some came in clusters within a few minutes, hours apart.

With the other medical problems, family issues, and whatnot my body is stressed out. That has made my life a constant cycle of medical hell. Well I decided I can't stand it no more. The family issues are being pushed to the side. While the other medical issues can be worked out gradually. My seizures need to be dealt with now.

During my most recent visit to my Neurologist we decided on a course of action. I decided to give one more med (Onfi) a try. It would be added to my other med (Trileptal). I told him that we'll give this med a few months. If nothing then I go for surgery after an updated video EEG monitoring session. He was all for this plan of action.

I was dreading this for years, but it looks like my only chance. 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.

***Sorry for this long post, but I wanted to give a full background for this thread.***
__________________________________________________________________________

The surgery I would be having is on my right temporal lobe. I would like to know from those that have had this surgery about its prep, post-op, recovery, post-recovery, now.

Explain what goes on when you check in, and when they prep you for surgery. Tell me about your post-op and recovery time. How long you stayed in the hospital, etc? When
you left the hospital how did you feel? How long did it take for you to fully recover, etc?
How are you now? Did the surgery work? Are you seizure free? Do you still take AEDs?

Please be honest.

 

[CQ:)]

During my most recent visit to my Neurologist we decided on a course of action. I decided to give one more med (Onfi) a try. It would be added to my other med (Trileptal). I told him that we'll give this med a few months. If nothing then I go for surgery after an updated video EEG monitoring session. He was all for this plan of action.

I was dreading this for years, but it looks like my only chance. I've given AED meds more than a fair chance: Tegretol, Phenobarbital, Keppra, Zonegran, Dilantin, Neurontin, Lamictal, Depakote, Topamax, Lyrica, Vimpat, Trileptal.

Hi BIGMAN,
Good luck with the new med. From my understanding usually if you try more then 3 Anti Epilepsy Meds with no success to control the seizures then there is a good possibility Meds will not completely control the seizures & it is time to look at other options.

The surgery I would be having is on my right temporal lobe. I would like to know from those that have had this surgery about its prep, post-op, recovery, post-recovery, now.

Explain what goes on when you check in, and when they prep you for surgery. Tell me about your post-op and recovery time. How long you stayed in the hospital, etc? When
you left the hospital how did you feel? How long did it take for you to fully recover, etc?
How are you now? Did the surgery work? Are you seizure free? Do you still take AEDs?

Please be honest.

I had brain surgery in March 2011 but my surgery was on my left temporal lobe. Before my neuro suggested surgey he had tried me on 5 different AEDs, Tegretol, Lamcital, Topamax, Keppra, Neurontin. When I went through the pre surgery tests I was on 3 meds Tegretol, Keppra & Neurontin which were all at high dosages & made me feel like a zombie. During my pre surgery tests the epitiologists took me of Neurontin (at my request because I hated that med) & reduced the Keppra.

This is the link to my thread I started just before my surgery & I post in when I have updates on my progress.
http://www.coping-with-epilepsy.com/forums/f41/almost-time-11741/.

I have been seizure free since surgery & I am just 3 months of reaching my goal of being 2 years seizure free.
At the moment I am still on Tegretol & Keppra but the goal both the neurologists & I have is to hopefully get me on 1 med at a lower dose. When I saw my neurologist at the epilepsy clinic in March for my 12 month post surgery follow up appt he started to reduce the Tegretol. He probably would've reduced it more when I saw him in September for my 18 month review but I was under extreme stress at the time so he felt it was better to keep my meds at the same level while I was under all the stress. I am due to go back to the epilepsy clinic in March for my 2 year follow up appt, my stress levels are pretty low again so I'm hoping if everything continues to go well by March then maybe the Neurologist will reduce my meds more.

If you do decide to go ahead with the surgery please keep in mind that it is not a cure & more like another treatment. The best way to prepare for surgery if you do eventually decide to take that path is to do as much research into the surgery as you can. There are members on here who are still having seizures after surgery so it will be good to hear their stories aswell.

If you need to know anything about the surgery (eg pre surgery tests) feel free to ask me.

 

[Nakamova]

Hi Bigman --

Any chance you could give a neurofeedback a try? Either way, I hope you find something that works well for you.

You may find these threads of interest:
http://www.coping-with-epilepsy.com/forums/f41/temporal-lobe-surgery-3312/
http://www.coping-with-epilepsy.com/forums/f23/risk-factors-temprol-lobe-surgery-14803/
http://www.coping-with-epilepsy.com/forums/f41/surgery-summer-15565/
http://www.coping-with-epilepsy.com/forums/f22/when-should-surgery-considered-15975/

 

[Cint]

Hi BIGMAN,

I had a Left Temporal Lobectomy and was only seizure-free for 14 months. Then the seizures returned with vengeance. Like you, before surgery, I was having multiple CP's a month, sometimes 3 a day and they tried me on several meds. 14 months after surgery, I had a bad TC seizure and to this day I've had CP's and some TC's. Not to mention the depression. But that was the left side. I hear the results for surgery on the right side are much better. I eventually had the VNS to help with control of the seizures. Has your neuro mentioned the VNS?

Here is more info about surgery:
http://www.epilepsy.com/epilepsy/surgery_expectations
http://www.epilepsy.com/epilepsy/temporal_lobectomy
http://www.epilepsy.com/epilepsy/vns

Good luck in your decision.

 

[RTL]

I had right-TL surgery nearly 10 years ago and have recounted the details here:

users.eastlink.ca/~kehoe/surgery/

Kevin

 

[BIGMAN131307]

Any chance you could give a neurofeedback a try? Either way, I hope you find something that works well for you.

Yes & No

Yes I could because there are two places that offer neurofeedback.

But no because the closest place only offers it for incontinence patients, while the other
is out of my travel range (public transportation).

I had a Left Temporal Lobectomy and was only seizure-free for 14 months. Then the seizures returned with vengeance. Like you, before surgery, I was having multiple CP's a month, sometimes 3 a day and they tried me on several meds. 14 months after surgery, I had a bad TC seizure and to this day I've had CP's and some TC's. Not to mention the depression.

That stinks, CPS are the hardest to deal with. When they happen most people don't know what the heck is going on. Many think we're day dreaming, drunk, or whatever. Don't let the depression get you down. Try to calm the activity with a peaceful hobby.

I hear the results for surgery on the right side are much better. I eventually had the VNS to help with control of the seizures. Has your neuro mentioned the VNS?

I've heard and read about the right side being more effective too. I'm hoping for that too.
A few years back my previous neurologist (who I really miss) talked about it. But based on the test(s) results surgery would be my best course of action.

I had right-TL surgery nearly 10 years ago and have recounted the details here: users.eastlink.ca/~kehoe/surgery/

Sounds like your on your way. Stay healthy, and keep us updated.

___________________________________________

Thx, to all that posted. I appreciate the various information. It's helping me to realize my path ahead. I know it's a long bumpy road, but I must take it. My life up to now has been an endless cycle of seizure despair. I've watched friends and family move on, while I'm stuck here. I'm tired of this, and say no more. When the weather breaks I'm in for another round of video EEG monitoring. After I get the test results, and I get to view them, if results look good surgery will be scheduled.

 

[jingle]

Started having seizures Nov 1990, had left temporal lobe surgery (remove oligodendroglioma tumor) Feb. 2006, had a seizure in May 2007 so had more surgery. That was my last seizure.... 6 years ago.
For the 2006 surgery I checked into hospital at 5:30 AM the day of surgery - Tuesday, Feb. 14. Checked out Thursday, Feb 16. Next surgery took one day longer.
I'm still on Trileptal - hospital neuro says I will be on AED for the rest of my life.

 

[BIGMAN131307]

Thx, to all those that replied.

I would appreciate more information about the post-op.

Tell me more about your recovery process.

How long did you stay in the hospital? Did you have much bruising & swelling? Did you need extra help when you went home? Was a visiting nurse needed for changing bandages?
Where there any other medical problems afterwards? IE: vision, hearing, etc.

How often did you go for checkups to the surgeon? When did you start reducing AED meds?

 

[jingle]

If I could figure out how to do it - I could show you a photo of the side of my head after surgery.
Pain was pretty bad - I had prescribed medication to help deal with it.
Minor bruising and swelling -- I had to have my glasses "bent".
~gulp~ docs removed all bandages the hour I was leaving the hospital.
Because temple/mandible muscles were cut I didn't want to eat - especially chew - for maybe 5 or 6 days after surgery.
No help at all --- husband (ex now) was so horrified by the entire process he did not stay at home.
After surgery I had appt with surgeon and neuro and MRIs done every 90 days for a year. Then changed to meetings & MRI every 6 months - currently having it all done every 12 months. Docs say it will be every 12 months for the rest of my life.
When it all started I was taking Keppra, Topamax and Trileptal ..... Keppra was dropped even before surgery. Topamax was dropped 12 months after surgery.
I'll be on Trileptal the rest of my life.

 

[BIGMAN131307]

I'll be on Trileptal the rest of my life.

How about the seizure activity level? Has it reduced some, most, little?

Seizures the same kind? Do they last longer or shorter?

Now the all around question, was it really worth all the pain?

 

[jingle]

I have no seizure activity!! That first surgery was Feb., 2006. I did not have a seizure until May 2007. I phoned the neuro dept at the hospital (Barnes Jewish in St. Louis, MO -- a GREAT hospital) and within a few days I was back in for VEEG, neuro psych exam and then in for second surgery.
I haven't had a seizure since then.

Last visit to neuro at the hospital I asked if I could quit Trileptal or cut down.
Neuro (who sees only adults with epilepsy) again said, "No". I take 4 300 mg per day.

If I'm told I need surgery again - I'll run to the hospital.
That miserable, difficult surgery was a whole lot easier than living with seizures and being so afraid of those.

I think that the most important decision you can make is WHERE you will have the surgery.

 

[CQ:)]

I had my surgery Thursday 10th March 2011 & was kept in hospital until Tuesday 15th March.
I had 22 staples in my head, the nurses changed the bandage covering the scar every few days. I had my staples removed the same day I left the hospital.
I live 4 hours from the hospital where I had my surgery so my Mum & I had to stay near the hospital for a week. I went back to the hospital on Monday 21st March for my 2 week checkup, I saw the assistant neurosurgeon, one of the Neurologists & the Neuropsych. I was given the all clear to go home so my Dad came & collected my Mum & I on Tues 22nd March.

When I was in hospital I was vomiting nearly every day & the staff kept trying to get me to drink plenty of water to keep the fluids up. My left eye started to swell up the day after the surgery & it eventually swelled so much where I couldn't see out of it. The nurses put patch on my left eye with witch hazel on it. I was able to open my left eye again on the Sunday but by that time the right eye started to swell up so the nurses put a patch with witch hazel on that eye. By the time I was released from hospital the swelling had gone from both eyes & they were only little bit bruised.

For the 1st 2 - 3 weeks after surgery I was very sensitive to noise & everything sounded like it was really loud or echoed. When I got the all clear to go back home I wasn't able to do alot & had to take it easy.
For the 1st couple of weeks my jaw was sore which made it hard to chew & I couldn't sleep on my left side (where the scar is) for about 4 - 5 weeks.

I stayed with my parents for 6 weeks after surgery, the 1st 3 weeks I would still get tired easily so slept alot but by the 4th week I was starting to get bored. I ended up emailing my neuropsych to find out it was ok to help my Mum with smaller house hold duties (eg washing dishes), she said it was fine to help with little things like washing up but take my time & if i got tired to have a break. I was sick of laying around so you can imagine how happy I was to be able to do something, even if it was just the dishes :roflmao:.

I went back to my own place in early May & saw my own neurologist as he wanted to see me after the surgery. I stayed home for another couple of weeks but by end of May I was getting really bored & missing my voluntary work at a charity shop. I emailed my neuropsych & got the all clear from her to go back to doing my voluntary work but I only did basic admin work & only worked for a few hours (eg 9am -3pm) 3 days a week. As I felt stronger & less tired I increased the amount of hours I would be volunteering & what I was able to do.

I wasn't working when I had my surgery so was on a medical certificate from Nov 2010 (the time I had the Video EEG & found out I could have surgery) until July 2011. When I came of the medical certificate started looking for PT work & in March this year (12 months after my surgery) I was ready to try FT work so started looking for either PT or FT work.

I saw the assistant neurosurgeon 3 days before my surgery so he could explain what was involved with the surgery. The assistant neurosurgeon came in to see me each day I was in hospital & the head neurosurgeon came into see me the day after the surgery & on the day I was aloud to go home. I also had either an epitologist or neurologist come in to see me each day I was in hospital to see how I was & get me to do little tests to check my strength & eyes.

After the surgery I had to go back to the hospital for regular checkups.
The 1st checkup was 3 months after surgery which was a 2 day visit as I had a series of appts & tests over those 2 days. On the 1st day I saw the head neurosurgeon in the morning then had an MRI to check everything was OK (that was the last MRI I had to have) then in the afternoon I saw the neurologist. On the 2nd day I had an eye test & a memory test.
After that I just had to have regular visits to the epilepsy clinic at the hospital to see the Neurologist & Neuropsych. For the 1st 12 months it was every 3 months (June 2011, Sept 2011, Dec 2011), after my 12 month checkup in March it was every 6 months (I had my last checkup in Sept 2012). I am due to go back to the epilepsy clinic in March 2013 for my 2 year checkup. I haven't had to see my local neurologist while I've been going to the epilepsy clinic & he asked me to go back to see him next year (2 years after surgery).

When I 1st started going through the pre surgery tests I was on 3 Anti Epilepsy Meds - Tegretol 400mg (AM /PM), Keppra 1500mg (AM/PM), Neurontin 400mg (AM, Noon,PM). When I was in for my Video EEG the epitiologist took me of the
Neurontin (at my request) & reduced my Keppra to 1000mg (AM/PM).
I had to be 12 months seizure free before we could discuss reducing the meds so when I had my 12 months follow up appt at the epilepsy clinic the Neurologist & I discussed reducing one of the meds. We decided to reduce the Tegretol, he started of by reducing it to 200mg (AM/PM).
I haven't had any more med changes since then but when I see the neurologist in March I am hoping he will reduce the Tegretol again.
I will most likely be on Epilepsy Medication (Probably Keppra) for the rest of my life but eventually we hope to gradually get me on 1 Anti Epilepsy Med but at a lower dose.

Let me know if I missed anything :roflmao:

This is a pic of my scar 2 weeks after surgery

 

[Fscene8]

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

You tried all these? Wow....you're a hero.
May I ask your experiences with Topamax and Lamictal? Were there any side effects?

 

[BIGMAN131307]

You tried all these? Wow....you're a hero.
May I ask your experiences with Topamax and Lamictal? Were there any side effects?

I've had side effects from all AEDs I've been on. Lamictal wasn't "too" bad, but Topamax was one of the worse. I'll list what side effects I've experienced with each AED. For each one I'll explain in detail.

Topamax side effects:

swelling of your face (This was mild around my neck. Looked like I gain a few pounds.)

mood changes, irritable (It would get agitated more easily.)

trouble sleeping (This mainly at night, because I would sleep more throughout the days.)

depressed (Having to take AED, lifes on hold, etc..)

pain around or behind your eyes (After seizures during a headache, worse on bad days.)

drowsiness, tired feeling (Common for all AEDs)

memory problems (Mostly because of seizure activity.)

loss of appetite, diarrhea, weight loss (I wasn't hungry. When I did eat I'd have severe stomach and groin pain with diarrhea. Which caused me to eat less, causing weight loss.)


Lamictal side effects:

swelling of your face (same)
mood changes (same)
depression (same)
loss of appetite (same)
tired feeling (same)
headache (same)

sensitivity to light (Most AEDs tell you to stay out of direct sunlight. I'm sensitive to indoor lighting. Anything higher than a 40watt soft-white bulb is too strong to be close to me.)

upper stomach pain, stomach pain, upset stomach (Diarrhea, constipation, loss of appetite started to mess with my digestive system.)



I hope that helps.

 

[suebear]

A medication which I had a bad reaction to was Felbatol; didn't stay on it for very long. Another medication I didn't take for long was Banzel.

 

[jingle]

I've tried lots and lots .... I've been on
Tegretol, Phenobarbital, Keppra, Zonegran, Dilantin, Neurontin, Lamictal, Depakote, Topamax, Trileptal, Felbatol, something that started with "S" , and something absolutely hideous (for me) ...so dizzy I could not walk unless I had a hand on a wall.

Never tried Lyrica, Vimpat or Banzel

 

[BIGMAN131307]

I've done some research on my local Epilepsy Centers website. I see they have Gamma Knife Surgery now listed under treatment options under Neurosurgery.

I'm trying to find out if that is an option for me. If it is available and I'm a good candidate, Id prefer that over tradition TL surgery.
__________________________________

Who has had Gamma Knife Surgery for TLE? What was the results?

 

[suebear]

I've done some research on my local Epilepsy Centers website. I see they have Gamma Knife Surgery now listed under treatment options under Neurosurgery.

I'm trying to find out if that is an option for me. If it is available and I'm a good candidate, Id prefer that over tradition TL surgery.
__________________________________

Who has had Gamma Knife Surgery for TLE? What was the results?

Something that I discovered when it came to the different types of surgery when I had asked a question to my neurologist was the reason he could not perform one surgery and needed to go with the other was due to the reason HOW the surgery needed to be done. In my case, the first surgery I had impacted my hippocampus and it effected the risk of having another type of surgery being done. When I had asked why, as the neurosurgeon explained to me, should he move forward with doing that particular surgery, the removal of what was needed I would literally loose not only more memory I would be highly likely to loose vocal capability. He was not willing to put me through that risk. The area the surgeon needed to enter was near the hippocampus and in my case, that is also the same area where my long term memory and vocal area had grown.

So with all of that being said, we chose to go another route and went with the DBS capability which was a lot safer as it was a simple procedure and would be more focused on the seizure range where my seizures are happening.

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. 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.

 

[Amoobaa]

Hey, I just had temporal lobe surgery. It was ok.. Totally out of it when I came round- but that's to be expected when you've undergone that kind if general anaesthetic. I don't really remember lots of pain but apparently I was in a bit of pain. Felt very fragile and a bit nauseous. It's been a couple of weeks now and I'm out and about. It's just so hard to tell because everyone is different.. We all have unique situations and reactions. I think it's been harder for my family than for me. I expected and was prepared for a miserable time.. I don't think they were prepared for how emotionally exhausting it would be for them. I want to give you more info but to be honest I can't know for sure what is the recovery effects, what's the seizure activity, what's the keppra side effects, what's just me .. You know? It's hard to differentiate and know what's what at this stage. I had my chewing muscle cut as well but I ate and exercised it straight away.. And it's been fine. Good luck with everything

 

[ashmstng]

Hey Bigman~

I keep up somewhat on this page. Not as much as I used to. 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. Its your decision. I will admit I have met some wonderful friends on here that I keep in touch with outside here.

To help you on what I know and dealt with. I had brain surgery on my left temperol lobe May 22nd 2008 at University of Florida Shands. I was on 4 meds before the surgery (Tegtretol, Topamax, Lyrica and keppra). They took me off Lyrica, and Tegretol before the surgery then took me off Topamax after the surgery. They told me they had to keep me on one med the rest of my life and that was keppra. I can say it surely was better than 4 meds. Since then been seizure free (4 Yrs). I can say the only thing I have after and had before the surgery is short-term memory loss. I can say I am happy with my decision and the outcome. The family/friends that helped me get to that decision.

I hope you figure what you want to do and do YOUR RESEARCH. They is plenty of pages to look into it. GoodLuck!!