Former brain tumor "owner" whose partial seizures have returned

[Kornfuzed]

Hello everyone. I put a similar post on the "Kitchen" page but I thought I would also post something here. I am a former brain tumor "owner" (grade 2 glioma in the left temporal lobe). It was removed way back in 1983 (yes, eighty-three!) when I was in my early 10's. I was having partial seizures for about 1.5 years before surgery but it wasn't until I had a grand mal that the tumor was discovered. I was prescribed Dilantin and I only had 4-5 partials in the first 10 years after surgery. That was followed by no seizures for 12 years, the last 10 without any meds. Then around 2005 or so, my partials returned. These partials are a bit different -- these are little more frequent but I know they are coming and they're less "powerful" (not tired afterwards, no headaches -- just spaced out for a few seconds and then back to "normal"). I had been dealing with them without meds until last month when I had another grand mal. My new neurologist's "solution" was a prescription to Keppra.

My question is has anyone had a similar seizure history (i.e., partial seizures then brain surgery then a long, seizure-free period that comes to a screeching halt)? If so, did your neurologist come up with a successful "solution?" (I don't know if "solution" is the best word but I think you know what I mean ). Did any former brain tumor patients have a second surgery, resection, more radiation therapy, a successful new med (especially if original med was Dilantin), or anything like that? I've been on Keppra for 4-5 weeks now but I'm not a big fan yet. It doesn't really seem to be helping much (2 partials since starting) and the side effects are not great (headaches, light-headed and now a possible rash). I had an MRI last month (and one back in 2007) and both neurologists gave my neurosurgeon an A++. However, my new neurologist mentioned scar tissue. Could this be causing my seizures? That is the comment that got me interested in resection even though my neurologist didn't seem too concerned.

Well, thanks for listening. Again, I was just seeing if there was anyone out there with a similar situation. Any response would be greatly appreciated!

 

[travel bug]

Hi Kornfuzed

I am also a proud former owner of a brain tumor I'll just give you a quick overview of my history and maybe it will help answer (or at least give some insight on) your questions.

I had a tonic clonic (aka grand mal) in Jan. of '07, was taken to the ER where I was diagnosed with a BT. It seemed to be low grade, so doctors took a wait and watch approach. I was put on Dilantin which didn't work for me. Not only did I feel like crap, but it wouldn't stay in the therapeutic range. (STAY WITH me here, I'm getting to something relevant ) I had a second seizure which was a simple partial motor seizure (my tumor is/was near the motor strip on the left side) While having the seizure, I was scared, but figured I'd be okay when I came through it. But after rolling over and resting a minute, I tried to get up but couldn't lift my head up. I panicked and had my dad call for an ambulance. In the ER, the doctor told me, "You have a brain tumor, you're going to have seizures. And even if you have surgery to have it removed, you'll likely have scar tissue which can also cause seizures." In other words, "Get used to it."

Okay, okay, I'll try to cut this a bit shorter. I had a couple more simple partial motors before my doctors finally - fearing that my tumor was growing and encroaching on my motor strip - sent me for surgery. The tumor turned out to be too invasive to remove completely, and though mostly exhibited low grade tendencies also showed some grade three characteristics. So, I was put on chemotherapy for a year. Anyway, for about six months following surgery, I had many simple partial motor seizures, BUT they were much much less severe and only lasted about 20-30 seconds instead of 2-3 minutes like previous seizures. Then...no more seizures since. Yay! However, I'm still on Keppra - though at a lower dose - because of the scar tissue. I'd rather play it safe than sorry. However, since surgery, I've had myoclonic jerks (or something, my neuros aren't that worried about it so they won't try to figure out what they are for sure) that I'm pretty sure are related to the scar tissue.

Scar tissue happens My local neurosurgeon sent me to one of his heroes who is world famous. I just think it can happen with the best of surgeons. I've heard from people on BT sites who have had excessive scar tissue removed successfully, but as that could cause scarring also, I think you'd want to get a couple opinions first.

As much as I respect the surgeon who did my surgery, if I needed another, I think I'd go to a major brain tumor center where they deal with BT's everyday, all day. Many of these centers will give second opinions without having to travel to them. Some of the top include MD Anderson in Houston, Duke University in North Carolina, University of California at San Francisco (UCLA is also well respected for BT's).

Sorry, this is probably far more of a response than you were looking for I hope there was something useful in this mess!

 

[jingle]

I'm a former brain tumor "owner" - grade ll oligodendroglioma - which was removed Feb., 2006. I have not had a sz since second surgery May, 2007 but I've stayed on Trileptal. Doc says I'll be on that for the rest of my life.
Suits me ... I'd rather have a drug than a seizure.

 

[qtowngirl]

Hi kornfuzed, and hugs.
I do/have not had a brain tumor but am looking at surgery (going to the surgery unit in Oct.). I want to make note re: travelbug's comment on a second surgery causing more scarring. So true.
To add, partial (focal) seizures can cause scarring as well (Mesial Temporal Sclerosis) which also causes more seizures. I am dealing with MTS in my left temporal lobe, and as with the chicken and the egg we'll never know which came first. I've had 1000+ simple partials in the past 18 years so my guess would be the constant seizures is what caused the scarring. Hoping it's not too deep and they end up more than certain about removing it.
What I'm getting at is looking at your partials on a day to day basis; if they aren't all that often and aren't interrupting your daily life, are they something you could live with? It's tragic really that either way (surgery or partials), more scarring is a possibility, but if it was me I'd weigh it out by which was going to risk my life more.
Myself it's not a 'choice' as I have them on a weekly basis, but again if yours aren't all that often it may not be as risky as a second surgery.
BEST OF LUCK I hope you make out okay.

 

[chwooton]

Seizures after surgery

I'm a little late to this party, but in case you are still listening, I'll respond.

My son had a resection after dealing with seizures for a year due to a cyst in his left frontal lobe (back in 2004 when he was 8). He was completely seizure-free for 5 years and tapered off all drugs after 2 years. Then in 2009, he had his first nocturnal seizure, and he has continued to have about one a year, always in his sleep. We only know about them because they cause him to bite his tongue, and he feels like a truck hit him for the whole next day.

He is now 17, and this month, I happened to be on a choir trip with him, and he had 2 in a row on the bus during the night. The busses dropped us off at an ER, and he had a third one there. Now he is on 50mg of Topomax 2x a day, and is scheduled for EEGs and maybe some grid mapping this summer.

We hate the medicine--but some people hate it more His side effects include word-finding difficulties and general confusion and impulsiveness. We just hope and pray that if he has any more seizures, that they will be at night. One doctor suggested taking only valium at bedtime. When the school year ends, we will engage in tests and second opinions to get the right treatment.

 

[qtowngirl]

did they give a reason why the seizures returned?
when they resected was it simply removal of the sz focus or was it a lesion/tumor?

 

[chwooton]

Nocturnal seizures after resection

They have not given us a reason, although they have mentioned scar tissue (well, WE have mentioned it, and they have not said, "no"). We have a very vague neurologist, and we are looking forward to our son turning 18 so he can get in with one who sees adults. It seems that a doctor who deals with adult epilepsy would be more helpful at this stage, but no one in our city will see him until he is 18.

So this summer, he is going to have an extended EEG (past EEGs have shown slight activity in the area where the jellybean-sized lesion was removed--they left a pingpong ball-sized margin, though). They also mentioned a high-res MRI to look at scar tissue. And they mentioned putting him in the EMU for a few days as well.

I would think that it's tough to study and medicate seizures that only happen in your sleep and only about once a year. Pity that you have to be on meds ALL year for the one night that it happens.

Anyone else in this situation?

 

[qtowngirl]

They have not given us a reason, although they have mentioned scar tissue (well, WE have mentioned it, and they have not said, "no").

good for you guys for being so pro-active, seeking out reasons on your own. so much better to do that than just show up to appts and accept whatever is (or isn't) said.

We have a very vague neurologist, and we are looking forward to our son turning 18 so he can get in with one who sees adults. It seems that a doctor who deals with adult epilepsy would be more helpful at this stage, but no one in our city will see him until he is 18.

how much longer, a few months or so right?

They also mentioned a high-res MRI to look at scar tissue. And they mentioned putting him in the EMU for a few days as well.

that is AWESOME!!

I would think that it's tough to study and medicate seizures that only happen in your sleep and only about once a year. Pity that you have to be on meds ALL year for the one night that it happens.

'have to' is not a fine line however. it may only happen one night because he's on them all year. he's lucky to have such excellent seizure control, which pls take from many of us that don't - we'd be in LOVE with taking meds all year if it meant only having one seizure. it's a good thing, a positive thing for him.

 

[chwooton]

I know that we are very blessed in the world of Epilepsy--I thank God every day, and I pray for those who live with all kinds and frequencies of seizures. I want to be more active with the Epilepsy groups, especially now that we are back in the "club"

My son is almost 17, so one more year, and then he will go to college. Much to his chagrin, I will probably move to be near him if he goes out of state (maybe I will move and just not tell him I am close for awhile!)

The side-effects of the Topomax seem to be lessening after a few weeks...no more tingling in his fingers, and he is not so confused about everyday things, and his appetite is back. Maybe it's not such a bad thing for him.

Thanks for your reply, qtowngirl

 

[qtowngirl]

you're welcome!
i am having surgery myself and am horribly worried about seizures coming back afterward. in fact, you just reminded me! i am having a phone consult with my surgeon this afternoon and that's a question i meant to put on the list - issues with scarring and szs returning? thanks

 

[chwooton]

Well, he was COMPLETELY seizure-free for 5 years, and then, as I've said, he only has about one a year in his sleep now. Before the surgery, he had several a day and was on three meds at once, and they were much worse.

I remember reading an account from a mom who said that her sons seizures came back after 3 years (again, not nearly as bad), and I ignored it--I didn't want to believe it, and I thought, "Ill deal with that if it comes, but I am not going to live every day worrying about it."

So you might ask your doctor if scar tissue causes different types/intensities of seizures than what you have pre-surgery. (then let me know

When is your surgery, and is it for a focal point or a lesion? Have you done the grids already, or will you?

 

[qtowngirl]

lesion, and they said grids aren't necessary. thank *!%*!*!

 

[jingle]

I'm old so I hardly fit in here but I had surgery Feb., 2006 to remove a lesion and didn't have a seizure until May, 2007...... then more surgery to remove more tissue. (left hippocampus which I miss a lot) I haven't had a seizure since then ..... still on Trileptal and will be on something the rest of my life.
I see my neuro (who sees only adults with epilepsy) the end of this month. Another MRI in Nov.
chwooton ... best wishes for your son.

 

[CQ:)]

I'm old so I hardly fit in here but I had surgery Feb., 2006 to remove a lesion and didn't have a seizure until May, 2007...... then more surgery to remove more tissue. (left hippocampus which I miss a lot) I haven't had a seizure since then ..... still on Trileptal and will be on something the rest of my life.
I see my neuro (who sees only adults with epilepsy) the end of this month. Another MRI in Nov.
chwooton ... best wishes for your son.

Hi Jingle,
The good thing about CWE is that there is a broad range of members who are different ages so you are never to old to join in on the conversations.
Great news about your seizure control, I hope you can continue to remain seizure free.

I had brain surgery in March 2011 but mine was to remove scarring on my left temporal lobe. I haven't had a seizure since surgery, I am currently on 2 meds Tegretol & Keppra but in the final stages of coming of Tegretol. Like you I will most likely be on 1 med for the rest of my life but eventually I should be on a lower dose of the med.

 

[Zolt]

Hey Kornfuzed,

I also had a tumor removed from my left parietal, back in 06, it was so big the Radiation Oncologist said if i have radiation that i would not be able to work. I told them i'll skip the radiation. My Seizure start in my arm and either stop there, or go on. Since it was a big tumor, there is always the risk of having scars/lesions. Luckily the tumor has not returned, so far. I've been on the fad meds, dilantin, keppra,.... and none really worked for me, i've always managed to have a seizure once a month on average. I'm on Gabapentin right now and it's side effects are a lot tolerable for me then the other meds i have been previously on.

It's ok, i've learned to live with seizures, but still it's like a religious moment having one. Knowing you are not in control of your body is not fun. But better seizures than the alternative coma or death from the Tumor. My tumor was found after i went to the ER after complaining about a fainting spell i had, I did not know it was a seizure at the time.

After learning that there are surgeries for seizures, i asked my neuro if that would help he my seizures, he said no. So I'm pretty much stuck in a rut, but i'm still happy and alive.

Zolt

 

[M4dH4TT3r]

I went crazy for a few years then the biopsy removed the pressure and I became sane again. I also had the brain tumor the size of a golf ball in my right frontal lobe removed then had a portion of the lobe removed to stop me from having 5-10 gran mal seizures a day now only have 1 or 2 a year while sleeping (mainly if I drink alcohol, rum excluded for some reason , take drugs, have a headache, or take asprin/tylenol/etc and am still effected by them when drifting off to sleep)

@zolt I highly recommend swedish neurological institute in washington doerghy does a damn good job I was awake for the surgery doing cognative tests while they numbed up parts of my exposed brain to make sure I didnt loose anything important on top of what they already knew controlled what!

I also find what seems to have helped me alot was not taking pain meds after the brain surgery (itchy shit that it is) but rather toughing it out with a ice pack I find because I didnt numb up any nerves they all work wonderfully still even the ones they said probally wouldnt.

 

[qtowngirl]

Well, he was COMPLETELY seizure-free for 5 years, and then, as I've said, he only has about one a year in his sleep now. Before the surgery, he had several a day and was on three meds at once, and they were much worse.

I remember reading an account from a mom who said that her sons seizures came back after 3 years (again, not nearly as bad), and I ignored it--I didn't want to believe it, and I thought, "Ill deal with that if it comes, but I am not going to live every day worrying about it."

So you might ask your doctor if scar tissue causes different types/intensities of seizures than what you have pre-surgery. (then let me know

When is your surgery, and is it for a focal point or a lesion? Have you done the grids already, or will you?

Hi cheroot on, just read this again and noticed I was to reply. He said scar tissue wasn't a concern after surgery. Said that it was somewhat of a myth that gets people more worked up than it should. I was surprised, however he is one of Canada's top neurosurgeons that specializes in epilepsy and vascular surgeries so I'm going to feel comfortable believing him. He said there are four classes you're in, one being 75 to 80 percent Sz free for life, two being still have szs but rarely, three being szs cut down by half, and four being no change in Sz activity. I'm in class one!!!! For my particular surgery, an amygdalo-hippocampectomy, my chance of a seizure free life is 80 percent. So, don't think it can get much better.