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seizures after brain surgery

Sun, 03/09/2008 - 08:03
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

Comments

Re: seizures after brain surgery

Submitted by Idina on Tue, 2011-05-17 - 02:35

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

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

Submitted by Lisa_Miller on Sat, 2011-09-03 - 21:10

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.

 

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

Submitted by bcinbar on Thu, 2012-04-12 - 00:36

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!

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!

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