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seizures after brain surgery

Hi....my wife had a brain tumor removed 7 years ago and since then has suffered from seizures.  She has had simple partial as well as at least one episode of Grand Mal seizures.  She takes Topomax and Keppra.  Most of the time she is fine but occassionally she has seizures in her facial muscles that are unseen by me or anyone else.  She says she can feel herself seizing.  Anyway, my questions is:  has anyone else experience seizures after a brain surgery and if so what is the prognosis for living seizure free?  Thanks

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Re: seizures after brain surgery

Wow. It was weird to hear about someone else like me. I had a tumor removed in 1/96. I didn't start having seizures until about the summer of '05. I was having multiple absence seizures per day and then had my first Grand Mal at work in 12/06. I have had 2 more Grand Mal seizures since then.

I had my original surgery at the University of Michigan Hospital in Ann Arbor, MI and am now going back to them for my treatment. What they have told me is that when there is damage to the brain (from the surgery or the original tumor) the brain will always try and repair itself. This is where the seizures come from, the brain is mis-firing and not repairing properly. They believe that my seizures will probably never go away and I will always have to be on medication. I am taking keppra & lamictal now. I know, not what you wanted to hear. I am sorry. Maybe your case is different. They have been talking to me about considering surgery because I am not responding well to any medication. We'll see how things go.

 I know how you feel. You feel like you have been through it all and everything is done and that is when the seizures start and bring all the bad feelings back. Send my best wishes to your wife. What kind of brain tumor was it?

Take care!

Angela

 

Re: seizures after brain surgery

Hi Everyone,  I'm new to the list.  My son has a tumor in his right side of brain (size: 3.9cm x 4.6 cm transverse plane, 5.3 cm craniocaudal).  Presumably it is a Dysembryoplastic Neuroepithelizl tumor (DNET).  Since the diagnose three years ago, the tumor has remained unchagned.  He has simple partial seizures approximately once every 10 days and it often happans at night or early in the morning.  We can't make up our mind for surgery to remove the tumor although all the doctors we have seen told us that he has a very good chance to be seizure free after the surgery.  Your cases make us more uncertain about the surgery.  My questions are: did you have seizures before the tumor was removed? How frequent and severe were the seizures during that time?   

Thank you all for your help! 

Mary, a very worried mother 

 

Re: seizures after brain surgery

I had Brain Surgery in 1981 after having a grand-mal seizure they found an Arterial Venus Malformation (AVM) when they did the surgery to remove it they found a suprise an anyurism that hadn't showed up in any of the tests after 25hours of surgery I did continue to have seizures for about another 4 years while they tried different meds to control them they eventually were able to control them until 1997 when they came back and they have not been able to get them under control since

Re: seizures after brain surgery

Hi Angela! Hope you are well!

Reading your post I thought, that this is exactly what is happening to my niece. Her name is Angela too. In 1998 she had a tumor (cerebral echinococcosis) removed in local hospital (we live in Kazakhstan). She was 8 years old. 9 years later she started to have seizures, multiple per day. Then gradually it went from simple to a grand mals. A week ago she had it at night laying in bed on her abdomen. We still do not know what exactly happened, but we found her with no sign of breathing, getting blue on her face. My dad gave her a cardiac massage while awaiting the ambulance. Doctors said that the first aid was given at right time. A little later and we could loose her.

She is on various anti-seizure medication for many years now, but it's not helping anymore. She also had a second op 2 years ago on removing the post-op cyst. Didn't help either. We can observe her gradual regression, her memory is far not good, even face expression is changing, skin is rough and red after all that chemicals.She can not work, can not study. And so far doctors can not give an answer if this will ever be cured.

How is it going with your seizures? Are you still on medication? Maybe you have heard about any medical innovations in this subject?

Thank you and take care!

Dinara

Re: seizures after brain surgery

I had been experiencing full, visual aura seizures for two+ years from a modest, benign tumor (2.5 cm meningioma, right parietal lobe) that went misdiagnosed as "silent migraines"-- until I fell over in my first grand mal and woke up in the ER, with the (post-MRI) correct diagnosis.  After the crainiotomy and full resection, I went through the great medication experiment: identify the ones that will prevent "breakthrough seizures," without making you feel sick to your stomach, or sorry to be alive, all while your brain heals from being terribly violated. (Note: I truly feel for those of you posting to this board, who must make the decision about whether to have surgery or to wait. I would ask those of you for whom medication is NOT currently a part of your treatment or consideration, the importance of/how difficult the selection of meds can be to this process can not be overstated).  It seems that there is no magic combination that works for everybody.  In my case, Keppra took me to a very dark (and ultimately intolerable) place, Trileptal worked well, but the light sensitivity was just too much.   Eventually, Topamax was what worked for me, and I took it for a year.  After my followup MRIs at six months and one year showed no tumor regrowth, my neurologist decided we could taper off my medications to nothing, which we did.  On the fourth day (!) after completion of my last Topamax dose, I had three grand mals in 24 hours.  So, back on the medication for me.

It's somewhat discouraging, but the brain does remain a bit mysterious in how it heals, and what precisely causes the various seizures we have.  My neurologist (one of the best in the country) pointed out that, even though my MRI showed no tumor regrowth, there is an actual space remaining in my brain from the tumor (meningiomas are notoriously slow-growing; we think it might have been there for 15-20 years, causing swelling!), and this swelling may take a long time to correct. This correction, plus the scar itself from the surgery, may continue to cause problems for me.  In the end, they're just not sure.  I still remain hopeful that, someday, I can try again to wean myself off of the medication for good, without the seizures returning.

Peace and warm wishes to you all.

 

L.

 

Re: seizures after brain surgery

I had a left temporal tumor removed last May.  Did great for the first 6 months.  Then had knee replaced and then the headaches and seizures started.  Saw the surgeon last week - the 1 year scan was clear.  Since I live in a very rural area - I will be seeing another doctor who is closer.  He will be the one to regulate my medicines. 

I thought I was having focal seizures, but the doctor called them intermediate.  I guess I will find out what that is next week when I see the other doctor. 

Since Jan.  I have had one seizure where I bit my tongue, had no idea what was going on, spent 3 days down with a full blown migraine, numerous other seizures where I do not even know they are happening and do not remember!  My family tells me that I jumble up my sentences or just completely ignore them.  These usually happen in the early evening or any time that I am tired.  So far I am on Keppa and have not had any side effects from it.  The doctors have increased the dosage.  

What I do not understand is this:  If the tumor (a meningioma)  caused my first and only grand mal seizure - now that it is gone - why am I still having seizures.  In Feb.  the doctors said the seizure was from a bad sinus infection. 

 I am also having cognitive problems which have improved but not cleared up.  This is very frustrating! 

I do not care how my pills I have to take - I would just like to get seizure free and return to an active life!

Re: seizures after brain surgery

I had a right selective amygdalahippocampectomy performed on October 12, 2004. I did have a few seizures after brain surgery, but after the doctors adjusted the meds I haven't had a seizure in 3 years. I am currently on Keppra and Lamictal for seizures and I also take Topamax for the headaches. I don't know if she gets the "ice pick" migraine headaches, but they really suck. Anyway, my doctors said if you have seizures after brain surgery and they are treated, you have between  60-80% chance of being seizure free. That's with the type of surgery I had though. I don't know if it applies tumour removal.

Re: seizures after brain surgery

Hi Everyone,  I'm new to the list.  My son has a tumor in his right side of brain (size: 3.9cm x 4.6 cm transverse plane, 5.3 cm craniocaudal).  Presumably it is a Dysembryoplastic Neuroepithelizl tumor (DNET).  Since the diagnose three years ago, the tumor has remained unchagned.  He has simple partial seizures approximately once every 10 days and it often happans at night or early in the morning.  We can't make up our mind for surgery to remove the tumor although all the doctors we have seen told us that he has a very good chance to be seizure free after the surgery.  Your cases make us more uncertain about the surgery.  My questions are: did you have seizures before the tumor was removed? How frequent and severe were the seizures during that time?   

Thank you all for your help! 

Mary, a very worried mother

(This message is for all of you)

Re: seizures after brain surgery

Hello Mary. I had seizures from 18 months old till I was 4 yrs old. they went into remission till I was 17 yrs old then came back. I have had Simple partials, complex partials and Tonic Clonics during this time. I just had surgery 5 months ago when I was 37 yrs old and have gone from about 2 Tonic Clonics a day to 1 Tonic Clonic in the past 5 months. That only occured because of a high fever.

If your sons Tumor is on the Right side of the brain it is the easier side to operate on generally. There are less cognative functions that can be effected. The other thing to consider is that as he gets older it will be a longer and more difficult healing process. Also there is the potential that the tumor could grow making it more difficult to opperate on and more difficult for your son to function while dealing with the tumor still being there. If the DR's are telling you that there is a good chance that he will be seizure free by doing this I would go for it and get it done. Since I posted last to you even my simple partials have begun to subside more and more as time has gone on. So dont be discouraged by my earlier comments because it truely is a 12 month healing process in order to be 100%.  Good luck in your decision. And God bless. I really hope for you and your sons sake that all goes well.              Sincerely Scott.

Re: seizures after brain surgery

Hi Scott,

Thank you very much for your kind regards and useful information.  May God bless!  I will post once we have a decision on my son's medical treatment.  Sincerely Mary.

 

Re: seizures after brain surgery

Youre welcome Mary. Good luck in your decision, and keep us all posted. We will be pulling for you guys.   Take care    Scott.

Re: seizures after brain surgery

Hello my name is Ranger and I just had my surgery 4 months ago. 11/12/2007.

I was having about 2 seizures a day prior to surgery. After surgery I had a couple of seizures while the brain was healing. Especially during the first 2 months. Since then the only thing I feel is the Pins and needles feeling on my scalp. Which in itself is a mild seizure. I need to wait until the 12 month period to judge for sure. However at this point it appears to have slowed but not completely stoped them.

As long as they continue to slowly improve or at the very least dont worsen from where they are I consider it a win, and worth the surgery.

Re: seizures after brain surgery

I had a pituitary macroadenoma that had infection involved removed in early 2003. Everything had been fine since then until last May.  I started having psuedo-seizures and grand-mal seizures and no neurologist could pinpoint why it was happening, until my last ER visit. The neurologist that was called in looked at my entire case history and said that anyone who has had a brain tumor, especially when infection is involved, can have seizure disorders starting 6 days, 6 years, or even 60 years after they had surgery. I have since been put on Dilantin to control the seizures and Flexiril and Hydrocodone as needed just in case seizure activity starts.  So far, I have dropped from 3-4 grand-mal seizures a week, to AT MOST 1-2 psuedo-seizures per week.

I thought this could help you out and give your neurologist a place to start/look.

Joseph

Nashville, TN

Re: seizures after brain surgery

What is the seizure cause and where are the seizures comming from? MRIs CT scans, EEGs can determine this. Also how the seizures look in the brain. I have had 4 testing surgeries and being told how likley I was to be seizure free they did not want to go though with the surgery because of where in the brain my seizures were mostly comming from. The doctors figured it would countinue and create more scarring in my brain tissue. Its better to leave as is. I have about 5 noticed complex partial seizures and 2  noticed absnense seizures a day. And 102 seizures a day. I am currently waiting on a refferal for a surgery for parkinsons that is proven to help with seizures. It is like a pacemaker but in my head.

Re: seizures after brain surgery

Hi, I'm 32 and have simple partial seizures. I had a right temporal lobectomy 6 weeks ago and had my first post op aura last night, no seizure to follow though. I was still devastated afterward, thinking that surgery was unsuccessful when my recovery was going so well. I have heard it is normal to have an aura or seizure at this stage, due to dried blood still absorbing into the body and the brain continuing to heal. Lately, I've been feeling really "low" and emotional - not sure if that has anything to do with it. Has anyone experienced this? I'm new to blogging...
Thanks for your help! Lynn