Has anyone experienced simple partial seizures after a crainiotomy to treat their AVM?
seizures after treatment for avm could be because there is swelling around the area in the brain where the avm was treated/removed. At least that is what I have been told and read in the many years I have been studying it. If yours is controlled seizures, it is not as delibitating as a grandmal seizure. I have had both - usually medication is prescribed for seizures. Try to be in a quiet room, avoid anything repetetive, loud noises and keep a light schedule. It is scary but it takes time, patience and keeping your surrounding area in quiet mode.
Thanks, Liz! Here’s what’s happening and if anyone else can give me advice I would appreciate it. Ten days after my craniotomy in December, I was holding a plate and all of a sudden lost control of my whole hand and arm and dropped the plate. My hand and entire arm were very tingly, numb, stiff and kind of shaky. It lasted about 5-10 minutes and afterwards it felt so weak and tired. Soon after I started vomiting like never before. I was told by the Dr. to go to the ER. They ran some tests, CT etc. They sent me home. I was a mess! They decided it was probably a side effect from the swelling around the brain like you said, Liz. When they did the surgery they had to make an unusually large bone flap with nine big holes and they cut my temporal muscle on the right side of my face. Everything is still pretty sore but major improvement. Then, 3 weeks later it happened again without the vomiting. This time I had intense heat shooting up my thumb and it felt more intense than the first one. Dr. scheduled me for sleep deprived EEG the next day. I stayed up all night, went in and my incision (which goes from ear to ear) was the exact line of where they needed to put the electrode things. They also said the incision was too fresh and full of scabs. They wouldn’t touch me and sent me home. All the docs then decided we should wait and give everything a chance to heal before doing another EEG. We were also concerned the EEG could give a false reading because it wasn’t too far out from surgery. The reason this is such a big deal for me, is because I am a pilot and have already given up my small airplane because now it will be several years before I fly solo as it is, due to my history of 3 avm’s and having a craniotomy and now if I have been having seizures I will be grounded for who knows how long, which is very heartbreaking. I am grateful for being alive and thank God things aren’t worse but, flying was my passion and like air to me. Anyway, enough of my pity party. Now, 3 days ago I had another episode but less severe. No stiffness but very tingly and numb. And then, about 5 minutes after, I felt this tingling in my face and tongue. My arm is still feeling weak today. Everything happened on the left side of my body and the avm was in the inside of brain on the right side around the area above my eye. I have no prior history of seizures.
Anyway, I am so sorry for going on and on but, I have looked everywhere online to find out more about what is going on. I realize this is probably seizures but I was hoping there could be another explanation and they will just go away. I don’t want to go on anti-seizure meds (who does?) The neurologist wants me to have an EEG but I am still concerned about a false reading. He tells me they sound like seizures and it is possible if I have more they can cause permanent damage. Anybody have any experience with this or could help to know what to do? I found this website yesterday. I sure wish I would have known about this before the other surgeries. This whole experience has been so overwhelming, which I am sure everyone else knows. How wonderful to have this support and someone to talk to that knows what I have been through and still going through. Thank you!
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I totally understand what you are going through. It can be really frustrating especially not being able to do the things you normally can do. It can drive you nuts and make you even more impatient. What can also help is getting into a ketogenic diet (usually for those with epilepsy do this) and it helps in curbing the seizures. It takes a couple more years before the avm changes its size. Your docs should be seeing you every month for the first year to see the progress of the surgery. As for the seizures - it will last anywhere from 2 minutes to sometimes 20…so just hang in there and keep your doctor in the loop of what’s going on with you constantly. There could be some major swelling in the brain from your surgery - ask your neurosurgeon to give you some concrete guidance. keep me posted on your happenings and I will help you in anyway I can.
Sue Roth said:
Thanks, Liz! Here’s what’s happening and if anyone else can give me advice I would appreciate it. Ten days after my craniotomy in December, I was holding a plate and all of a sudden lost control of my whole hand and arm and dropped the plate. My hand and entire arm were very tingly, numb, stiff and kind of shaky. It lasted about 5-10 minutes and afterwards it felt so weak and tired. Soon after I started vomiting like never before. I was told by the Dr. to go to the ER. They ran some tests, CT etc. They sent me home. I was a mess! They decided it was probably a side effect from the swelling around the brain like you said, Liz. When they did the surgery they had to make an unusually large bone flap with nine big holes and they cut my temporal muscle on the right side of my face. Everything is still pretty sore but major improvement. Then, 3 weeks later it happened again without the vomiting. This time I had intense heat shooting up my thumb and it felt more intense than the first one. Dr. scheduled me for sleep deprived EEG the next day. I stayed up all night, went in and my incision (which goes from ear to ear) was the exact line of where they needed to put the electrode things. They also said the incision was too fresh and full of scabs. They wouldn’t touch me and sent me home. All the docs then decided we should wait and give everything a chance to heal before doing another EEG. We were also concerned the EEG could give a false reading because it wasn’t too far out from surgery. The reason this is such a big deal for me, is because I am a pilot and have already given up my small airplane because now it will be several years before I fly solo as it is, due to my history of 3 avm’s and having a craniotomy and now if I have been having seizures I will be grounded for who knows how long, which is very heartbreaking. I am grateful for being alive and thank God things aren’t worse but, flying was my passion and like air to me. Anyway, enough of my pity party. Now, 3 days ago I had another episode but less severe. No stiffness but very tingly and numb. And then, about 5 minutes after, I felt this tingling in my face and tongue. My arm is still feeling weak today. Everything happened on the left side of my body and the avm was in the inside of brain on the right side around the area above my eye. I have no prior history of seizures.
Anyway, I am so sorry for going on and on but, I have looked everywhere online to find out more about what is going on. I realize this is probably seizures but I was hoping there could be another explanation and they will just go away. I don’t want to go on anti-seizure meds (who does?) The neurologist wants me to have an EEG but I am still concerned about a false reading. He tells me they sound like seizures and it is possible if I have more they can cause permanent damage. Anybody have any experience with this or could help to know what to do? I found this website yesterday. I sure wish I would have known about this before the other surgeries. This whole experience has been so overwhelming, which I am sure everyone else knows. How wonderful to have this support and someone to talk to that knows what I have been through and still going through. Thank you!
I left a message for my neurosurgeon in KC where I had the surgeries but, didn’t hear back yet. My neurologist is here where I live and I spoke to his nurse because he has been out-of-town. He should call me today, I hope. They made an appointment for a EEG today if the Dr. wants me to have one. My arm and mostly hand, is still feeling weak and kind of numb, heavy and tingly. Sometimes it feels like little needle pricks. Do you know if I continue to have more seizures can there be some type of permanent damage? If so is it best to get on anti-seizure meds to prevent this? As I said before I am trying to avoid this but, denial isn’t good either.
Liz Chamberlain said:
I totally understand what you are going through. It can be really frustrating especially not being able to do the things you normally can do. It can drive you nuts and make you even more impatient. What can also help is getting into a ketogenic diet (usually for those with epilepsy do this) and it helps in curbing the seizures. It takes a couple more years before the avm changes its size. Your docs should be seeing you every month for the first year to see the progress of the surgery. As for the seizures - it will last anywhere from 2 minutes to sometimes 20…so just hang in there and keep your doctor in the loop of what’s going on with you constantly. There could be some major swelling in the brain from your surgery - ask your neurosurgeon to give you some concrete guidance. keep me posted on your happenings and I will help you in anyway I can.
Sue Roth said:Thanks, Liz! Here’s what’s happening and if anyone else can give me advice I would appreciate it. Ten days after my craniotomy in December, I was holding a plate and all of a sudden lost control of my whole hand and arm and dropped the plate. My hand and entire arm were very tingly, numb, stiff and kind of shaky. It lasted about 5-10 minutes and afterwards it felt so weak and tired. Soon after I started vomiting like never before. I was told by the Dr. to go to the ER. They ran some tests, CT etc. They sent me home. I was a mess! They decided it was probably a side effect from the swelling around the brain like you said, Liz. When they did the surgery they had to make an unusually large bone flap with nine big holes and they cut my temporal muscle on the right side of my face. Everything is still pretty sore but major improvement. Then, 3 weeks later it happened again without the vomiting. This time I had intense heat shooting up my thumb and it felt more intense than the first one. Dr. scheduled me for sleep deprived EEG the next day. I stayed up all night, went in and my incision (which goes from ear to ear) was the exact line of where they needed to put the electrode things. They also said the incision was too fresh and full of scabs. They wouldn’t touch me and sent me home. All the docs then decided we should wait and give everything a chance to heal before doing another EEG. We were also concerned the EEG could give a false reading because it wasn’t too far out from surgery. The reason this is such a big deal for me, is because I am a pilot and have already given up my small airplane because now it will be several years before I fly solo as it is, due to my history of 3 avm’s and having a craniotomy and now if I have been having seizures I will be grounded for who knows how long, which is very heartbreaking. I am grateful for being alive and thank God things aren’t worse but, flying was my passion and like air to me. Anyway, enough of my pity party. Now, 3 days ago I had another episode but less severe. No stiffness but very tingly and numb. And then, about 5 minutes after, I felt this tingling in my face and tongue. My arm is still feeling weak today. Everything happened on the left side of my body and the avm was in the inside of brain on the right side around the area above my eye. I have no prior history of seizures.
Anyway, I am so sorry for going on and on but, I have looked everywhere online to find out more about what is going on. I realize this is probably seizures but I was hoping there could be another explanation and they will just go away. I don’t want to go on anti-seizure meds (who does?) The neurologist wants me to have an EEG but I am still concerned about a false reading. He tells me they sound like seizures and it is possible if I have more they can cause permanent damage. Anybody have any experience with this or could help to know what to do? I found this website yesterday. I sure wish I would have known about this before the other surgeries. This whole experience has been so overwhelming, which I am sure everyone else knows. How wonderful to have this support and someone to talk to that knows what I have been through and still going through. Thank you!
I am really surprised that the doctors had not prescribed any seizure medications to you yet after knowing that those were symptoms you were having. Seizure medications can reduce the frequency of seizures. Most times the patient is prescribed additonal medications to reduce the swelling in the brain for a few monoths to a couple of years depending on how long the neurosurgeon is going to be treating you. Please also bear in mind that each treatment is different from patient to patient. Now with that said, if you are experiencing the tingling, numbness, etc, that is telling you that the surgery has affected the motorskills in a particular limb and would probably cause it to become weak over time. Physical therapy for your motorskills is necessary and also keep a journal of the frequency of those side effect with dates so that you can communicate with the doctor on those happenings. As for me…I have learnt to live with weakness on my right leg from my knee down. I can play any sports like I used to but am able to walk and ride my bicycle with my daughter. I can drive thank goodness and did drive even during my controlled seizure activity so have faith…keep your chin up and just bug the doctor as much as you should with your ailments because that will allow for you to get as much help and also for the doctors to make note of what you need as far as health support. I had no one to go to when I had the treatment and am happy to say that the man upstairs was my saviour. I am proud to say that I am a walking testament to the clinical study done in my name and a grant provided to the hospital for the success of my treatment. So stay strong and smile okay. Don’t hesitate for an instant to contact me if you need to. my email is â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â– â–
Thanks, for all the advice and encouragment. I was on Dilantin for a month after the surgery but, still had what they think were seizures. I’ve always known this was a possiblity and was told not to be too surprised if it happened. My neurosurgeon has been great and following me very closely all along. He is in KC so I have to go back and forth for checks up while communicating by phone in between visits. All the Drs. are overall very pleased with my results so far, except for this issue with my arm. I am not concerned it is anything too serious, just one of those things I guess I shouldn’t ignore and need to take care of. I have a neurologist here in town that I have also been seeing. Because my arm is still bothering me since the episode on Sunday, they got me in for an EEG today. Dr. will get results tomorrow and then I have any appointment next week to talk about what to do next. It was quite strange during the EEG. After doing the heavy breathing and strobe lights, as they did the strobes, I could feel my arm go even more tingly and numb with little pin pricks. It felt very tired and sore afterwards and is still bothering me now. Dr. will call me tomorrow to talk about results. I have been jotting down things on my calendar, however, I should get a journal like you suggested. I also looked up the diet you mentioned, I will ask the Dr. about that. I am glad to hear PT has helped you. I sure appreciate your taking the time to help me. I am trying to stay real positive and have been through most of this but, I am a little discouraged right now. And, since I have had 3 avm’s already, the thought of another one keeps messing with my mind.
Liz Chamberlain said:
I am really surprised that the doctors had not prescribed any seizure medications to you yet after knowing that those were symptoms you were having. Seizure medications can reduce the frequency of seizures. Most times the patient is prescribed additonal medications to reduce the swelling in the brain for a few monoths to a couple of years depending on how long the neurosurgeon is going to be treating you. Please also bear in mind that each treatment is different from patient to patient. Now with that said, if you are experiencing the tingling, numbness, etc, that is telling you that the surgery has affected the motorskills in a particular limb and would probably cause it to become weak over time. Physical therapy for your motorskills is necessary and also keep a journal of the frequency of those side effect with dates so that you can communicate with the doctor on those happenings. As for me…I have learnt to live with weakness on my right leg from my knee down. I can play any sports like I used to but am able to walk and ride my bicycle with my daughter. I can drive thank goodness and did drive even during my controlled seizure activity so have faith…keep your chin up and just bug the doctor as much as you should with your ailments because that will allow for you to get as much help and also for the doctors to make note of what you need as far as health support. I had no one to go to when I had the treatment and am happy to say that the man upstairs was my saviour. I am proud to say that I am a walking testament to the clinical study done in my name and a grant provided to the hospital for the success of my treatment. So stay strong and smile okay. Don’t hesitate for an instant to contact me if you need to. my email is lchamberlain@embarqmail.com
Hang in there Sue…yes Dilantin did help a little with the seizures. Just keep up with what you are doing and when you are tired…rest…that helps. It is a journey each day so take it one step at a time. Yes I know its hard but pray and let the mind take over matters as it is what you make of the situation to come out of this well and healthy. I’ll be here so if you need to unload on what has transpired…I will hold your hand and be there for you.
Again, I appreciate the support. I am staying positive and looking ahead!
Liz Chamberlain said:
Hang in there Sue…yes Dilantin did help a little with the seizures. Just keep up with what you are doing and when you are tired…rest…that helps. It is a journey each day so take it one step at a time. Yes I know its hard but pray and let the mind take over matters as it is what you make of the situation to come out of this well and healthy. I’ll be here so if you need to unload on what has transpired…I will hold your hand and be there for you.
I’ve had simple partial and gran-mal seizures since having the craniotomy and I never had seizures before and didn’t start having seizures until a year after the craniotomy. I was told it was from scar tissue??? Anyway now I take 1,750mg of seizure medicine a day. I don’t want to sound like there isn’t any hope because as long as I stay on the meds everything is ok. When I get upset and about every 2 to 3 months I can count on a seizure but I keep Ativan with me just in case and I really do live a normal life. Good luck to you and don’t get discouraged, the meds can make it better.
Kimberly, which type of seizures did you have first? I am surprised you went a whole year without any and then started having them. I am sorry to hear that but, it sounds like you have this pretty well under control. Were you doing well up until the seizures or were you having other complications from the craniotomy? Do the Drs. think you will always have seizures or will the scar tissue change and they could stop? I am trying not to be discouraged and it helps to hear that you are handling it well.
Thanks for responding. Take care.
Kimberly Nolan said:
I’ve had simple partial and gran-mal seizures since having the craniotomy and I never had seizures before and didn’t start having seizures until a year after the craniotomy. I was told it was from scar tissue??? Anyway now I take 1,750mg of seizure medicine a day. I don’t want to sound like there isn’t any hope because as long as I stay on the meds everything is ok. When I get upset and about every 2 to 3 months I can count on a seizure but I keep Ativan with me just in case and I really do live a normal life. Good luck to you and don’t get discouraged, the meds can make it better.
On the plus side:
I had a few seizures not long after my operation and was put on kepra, I was told it is very common after operation which creates scars to the brain which then get in the way of signals travelling through your brain. I thought this made complete sense, but was also frustrated as I always thought another was round the corner. I have recently been told that it was the operation, so I have now come off kepra and have not had any problems. So hopefully yours will just be temporary so don’t worry. And if it isn’t a friend of mine is epileptic and after time has managed to control it and live life as normal but just having to drop a few tablets every day.
Hope this helps.
Luke
Thanks, Luke. I am glad to hear the seizures were temporary. I saw the neurologist last week and we decided to wait and see if I have any more before going on any anti-seizure meds. What bothers me now is my left arm and hand always feel weak and kind of numb and tingly. Did you have any problems like that after the seizures? If so, was that temporary too?
Luke S said:
On the plus side:
I had a few seizures not long after my operation and was put on kepra, I was told it is very common after operation which creates scars to the brain which then get in the way of signals travelling through your brain. I thought this made complete sense, but was also frustrated as I always thought another was round the corner. I have recently been told that it was the operation, so I have now come off kepra and have not had any problems. So hopefully yours will just be temporary so don’t worry. And if it isn’t a friend of mine is epileptic and after time has managed to control it and live life as normal but just having to drop a few tablets every day.
Hope this helps.
Luke
I can’t say I did but its not surprising when you have been through all this. That’s good they you don’t need the meds, i did and it used to get me a bit aggressive and argumentative which is completely out of character for me.
Take care
Luke
Sue Roth said:
Thanks, Luke. I am glad to hear the seizures were temporary. I saw the neurologist last week and we decided to wait and see if I have any more before going on any anti-seizure meds. What bothers me now is my left arm and hand always feel weak and kind of numb and tingly. Did you have any problems like that after the seizures? If so, was that temporary too?
Luke S said:On the plus side:
I had a few seizures not long after my operation and was put on kepra, I was told it is very common after operation which creates scars to the brain which then get in the way of signals travelling through your brain. I thought this made complete sense, but was also frustrated as I always thought another was round the corner. I have recently been told that it was the operation, so I have now come off kepra and have not had any problems. So hopefully yours will just be temporary so don’t worry. And if it isn’t a friend of mine is epileptic and after time has managed to control it and live life as normal but just having to drop a few tablets every day.
Hope this helps.
Luke
That’s the problem with so many meds., the side effects seem to cause more problems. I am going to wait and see and hopefully avoid taking anything. How are you doing now? Is yours still active? Are you getting any more treatments?
Luke S said:
I can’t say I did but its not surprising when you have been through all this. That’s good they you don’t need the meds, i did and it used to get me a bit aggressive and argumentative which is completely out of character for me.
Take care
Luke
Sue Roth said:Thanks, Luke. I am glad to hear the seizures were temporary. I saw the neurologist last week and we decided to wait and see if I have any more before going on any anti-seizure meds. What bothers me now is my left arm and hand always feel weak and kind of numb and tingly. Did you have any problems like that after the seizures? If so, was that temporary too?
Luke S said:On the plus side:
I had a few seizures not long after my operation and was put on kepra, I was told it is very common after operation which creates scars to the brain which then get in the way of signals travelling through your brain. I thought this made complete sense, but was also frustrated as I always thought another was round the corner. I have recently been told that it was the operation, so I have now come off kepra and have not had any problems. So hopefully yours will just be temporary so don’t worry. And if it isn’t a friend of mine is epileptic and after time has managed to control it and live life as normal but just having to drop a few tablets every day.
Hope this helps.
Luke
Hi lIZ i had a simple partial seizure but not beacsue of a avm being removed. i had radiation andit was two years post radiation when it tookplace that I had the seizure.and it was without brain swelling.funny thing is ,now three years later.I just had an mri and it shows brain sweling around the avm,This is the first time ive ever had swelling,from what ive read its called edema post brain edema ,does not always happhen three years later,but its due to the radiation gamma ,radiation…so I just had a mri with contrast yesterday and am waiting on the results to see why after so long there would be swelling…no partial seizure now,but I am on topamax now to control it,and it seems to be helping a lot!!
Thanks, Caroline. I sorry to hear you are having the swelling. I didn’t know the effects from all the treatments would cause problems years later. It’s good the topamax is controlling things. Do you have any side effects from taking it? Let us know how the MRI turns out. It sounds like you have been through a lot and you remain to keep such a positive attitude. Take care.
Caroline said:
Hi lIZ i had a simple partial seizure but not beacsue of a avm being removed. i had radiation andit was two years post radiation when it tookplace that I had the seizure.and it was without brain swelling.funny thing is ,now three years later.I just had an mri and it shows brain sweling around the avm,This is the first time ive ever had swelling,from what ive read its called edema post brain edema ,does not always happhen three years later,but its due to the radiation gamma ,radiation…so I just had a mri with contrast yesterday and am waiting on the results to see why after so long there would be swelling…no partial seizure now,but I am on topamax now to control it,and it seems to be helping a lot!!
I have been getting partial seizures for about 7 months now. I thought it was just migraine aura, until I went to the doctor and they told me it was simple partial seizures.
Now, they put me on keppra and I haven’t had once since. What happens for me during a partial seizure is my hand goes numb (right side), then my arm, then my shoulder, then it works it’s way down until it reaches my foot then it’s gone. During these partial seizures I tend to get confused and tired.
I know these partial seizure can be scary, but I’m glad they haven’t reached the full extent. I wish the best for you.
Danielle
Danielle,
I just want to caution that this is a very old conversation (12 years old!) and we moved platforms in summer 2016 which was a change too far for some people. When you find conversations that are as old as this, consider starting a new conversation rather than trying to restart a really old one.
Very best wishes,
Richard
Hi Richard,
I realized that once I posted it, should’ve probably deleted it but oh well. It was somehow in my “Unread” category, along with 1 other & I thought I would’ve related to something like this. My apologies!
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