Anyone having seizures as a result of their aneurysmal clipping?
Hi Mary,
I have had several grand mal seizures in the years since my clipping. Thanks be to God, I am well controlled now. My last one was 20 years ago but I still take anti seizure medication.
Carole
I had what seemed to be very successful clipping of two unruptured aneurysms, then one good day at home, followed by an episode of seizures that seemed completely out of the blue to me. I don't remember the ambulance ride and all that, and spent a couple of days in the hospital. The various tests (EEG, CT, angiogram) after the seizure were all clear, so I am hoping that it was just a delayed surgical complication, but I don't know yet. It's also really depressing, suddenly being unable to drive, think clearly, and so much more. I'm on 2000 mg of Keppra (1000 2x/day) but I don't know if it'll be forever or just while I heal from surgery. I also don't know how much of the yucky I'm experiencing now is 1) side effects of the seizure, 2) side effects of the medicine, or 3) side effects of the surgery, and how much I can expect to resolve, but I'm trying to be patient and positive. So glad to know I'm not alone.
Hi Mary,
The only time I encountered seizure activity was when I collapsed into a coma after rupture...then again when my coils compacted several years later...I've had two clippings and at neither time did I have any problems with seizures...What does your Neurosurgeon offer on this? Are you currently on anti-seizure medication? Peace to you as you get thru this,
Janet
I received 3 clips for one odd-shaped ruptured aneurysm in January 2014. So far, no seizures, knock on wood. I never really feel "in the clear" though; my Dad had a ruptured aneurysm in his 30's, and started having seizures several years after his clipping surgery. He was on anti-seizure meds the rest of his life. My neurosurgeon has said I probably won't have them, but I don't think there are any guarantees. I try not to let myself get too tired, as I've heard that severe fatigue can bring them on. I can't say whether that is true or not, but I can tell my body feels very very strange if I let the fatigue take over; kind of like my brain is "offline".
Hi Everyone,
thank you all for your response. I have not been active at this site for 3 years now. time flies. I felt as though I couldn't be helped and insult to my injury the medical professionals had me feeling like it was all in my mind. They had me so distraught that I started believing them. Things got really bad. I ended up in the psych ward 3 times for suicide ideation. I'm currently under the care of 1 neuro doc, 2 cardio doc (arrythmia and vascular) a psychiatrist and therapist. I'm having all sorts of issues and seizures are not the least of them. I am taking AED's. I have not had a tonic-clonic seizure yet and I pray I never do. The things (seizures) I have now are scary enough. I was told by a neuro doc that they are simple partial seizures, he even used the word complex at one time. They're getting more intense so I just take it one day at a time. I am still driving and working. My cardio doc suggested that I start my disability, not easy at all and don't see this happening in the near future. I've had multiple EEG's and all were negative for seizure activity, but was told that it is relatively hard to capture a simple partial seizure.
Again thank you for your responses. I hope this post finds you all doing well.
Some of the things I am experiencing
Smells
Sounds
Vision distortion
Feeling unplugged (powering down)
Sinking, (rollercoasted sensation)
Excessive yawning ( at time back to back and it can feel like my yaw will dislocate)
Rigid/stiff muscles ( my entire body stretches)
nausea
and extreme fatigue after episodes.
Mary...I know a # who have seizures...and recently pulled data on seizures ...which is set aside until I finish my work on cognitive impairment/dementia variants...and I cannot mentally manage two subjects...I know we have had some members who have had either clips, coils, or stents...who have had seizures... post - procedure...
My bit of memory that in cognitive issues, there are also variants in seizures...I have not yet gotten that into my limited brain cells...
I so remember my first Aid...for an employee with epilepsy... when I was so young/new supervisor...pre-911, cell phones, etc... After she was off in ambulance, my week knees were ready to return to the floor for their own recovery...she/I had been blessed w/my corporate first classes...
Mary, I just saw this and realized I replied over a year ago. But I wanted to add that I have some of the symptoms you listed above, too! I thought they were either side effects of the AED (Keppra) or just me (I have a really slow heart rate normally and some other hearing/vision issues, which may be genetic). I definitely get episodes of extreme fatigue/drowsiness, with the yawning thing, and even the stretching. when I get really tired, it seems like one eye just stops working sometimes, and I have that rollercoaster or flying feeling when I'm falling asleep or meditating sometimes.
It's all very sporadic, though, and I haven't had any more seizures since my no-good-very-bad-first-seizure day, or at least nothing I would call a seizure. I did have an EEG that showed some slowing and epileptiform waves on the side of my brain that did not have the clipping surgery, which is odd, per the neurologist, so she is keeping tabs on it.
I don't know that I have anything useful to offer about it all, except that you're not crazy. My clipping surgery may have saved my life, but it also opened a whole new can of worms-- the seizures/need for AED's; a bit of depression (maybe an AED side effect, maybe not), temporary cognitive impairment (not sure if that entirely resolved... it'shard to evaluate yourself over time), a couple new cardiac issues that were discovered as a followup to the post-surgery seizures, fear of future aneurysms and seizures, etc.
Mary... you may want to search:
olfactory bulb and optic nerve anatomy and physiology
the images that come up (at least in my google connection)... display the proximity of those cranial nerves...the olfactory bulb is essentially a smidgen behind/between our eyes...(how close behind...I have not figured out)...
(I always fail in using the website address on the base of the images...to attempt to return to)
These are the two (of our cranial nerves - left and right) that form/connect to a specific portion inside our brain...
The other 10 (CNs 3-12 - L /R) are formed/connected around the brain stem...
but they are yet all essentially in close proximity.
The one trigeminal (CN 5in the brain stem)..has 3 branches...the ophthalmic...(V1) connects to the retina/optic area.. The other ones are CN III- oculomotor, CN IV trochlear; and CN V1 - abducens that support/control the muscles of our eyes...
I do not know which of your artery(ies)were treated ...and, you may want to search that similarly:
artery name anatomy and physiology
This may help you form your questions for your neuro-docs...
Hope you will share any of your results...and, forgive me for anything I have mistyped and/or reversed in order...
patioplans
Mary Terrance said:
Some of the things I am experiencing
Smells
Sounds
Vision distortion
Feeling unplugged (powering down)
Sinking, (rollercoasted sensation)
Excessive yawning ( at time back to back and it can feel like my yaw will dislocate)
Rigid/stiff muscles ( my entire body stretches)
nausea
and extreme fatigue after episodes.
akhol said:
Mary, I just saw this and realized I replied over a year ago. But I wanted to add that I have some of the symptoms you listed above, too! I thought they were either side effects of the AED (Keppra) or just me (I have a really slow heart rate normally and some other hearing/vision issues, which may be genetic). I definitely get episodes of extreme fatigue/drowsiness, with the yawning thing, and even the stretching. when I get really tired, it seems like one eye just stops working sometimes, and I have that rollercoaster or flying feeling when I'm falling asleep or meditating sometimes.
It's all very sporadic, though, and I haven't had any more seizures since my no-good-very-bad-first-seizure day, or at least nothing I would call a seizure. I did have an EEG that showed some slowing and epileptiform waves on the side of my brain that did not have the clipping surgery, which is odd, per the neurologist, so she is keeping tabs on it.
I don't know that I have anything useful to offer about it all, except that you're not crazy. My clipping surgery may have saved my life, but it also opened a whole new can of worms-- the seizures/need for AED's; a bit of depression (maybe an AED side effect, maybe not), temporary cognitive impairment (not sure if that entirely resolved... it'shard to evaluate yourself over time), a couple new cardiac issues that were discovered as a followup to the post-surgery seizures, fear of future aneurysms and seizures, etc.
I had a mitral valve murmur prior to having the aneurysm, that was the only known heart issues outside of mild palpitations. I say mild because now the palpitations are un-real. I was recently diagnosed as having aortic insuffiency, and aortic ascending aneurysm, severe left septum hypertrophy and couplet, bi couplet palpitations (the metoprolol helps with those). Like you my fear is having another rupture. I freak out when I hear loud noises and woshing in my ears which I hear from time to time (usually when stressed). I had a neuro-cognitive test done a few months ago, they said that I was fine, exceptional even. I know other wise. I have good days when things just flow like clockwork and I have days when I am confused, anxious and horrified at taking the next breath.
I get the distinct feeling that they think I am hallucinating, and I very well maybe. I am not the same, I don't think, eat or do anything that I did the way I did since the aneurysm It's getting very frustrating trying to get medical help, trying to understand what is going on, living in fear, unable to step outside of my home, the isolation from family, friends and church, the angina attacks, the health issues, trying to work, the bipolar and depression and believe it or not the list goes on.
Thank you for your response. I appreciate you taking time to share with me and help me.
patioplans said:
Mary... you may want to search:
olfactory bulb and optic nerve anatomy and physiology
the images that come up (at least in my google connection)... display the proximity of those cranial nerves...the olfactory bulb is essentially a smidgen behind/between our eyes...(howlose behind...I have not figured out)...
(I always fail in using the website address on the base of the images...to attempt to return to)
These are the two (of our cranial nerves - left and right) that form/connect to a specific portion inside our brain...
The other 10 (CNs 3-12 - L /R) are formed/connected around the brain stem...
but they are yet all essentially in close proximity.
The one trigeminal (CN 5in the brain stem)..has 3 branches...the ophthalmic...(V1) connects to the retina/optic area.. The other ones are CN III- oculomotor, CN IV trochlear; and CN V1 - abducens that support/control the muscles of our eyes...
I do not know which of your artery(ies)were treated ...and, you may want to search that similarly:
artery name anatomy and physiology
This may help you form your questions for your neuro-docs...
Hope you will share any of your results...and, forgive me for anything I have mistyped and/or reversed in order...
patioplans
Mary Terrance said:Some of the things I am experiencing
Smells
Sounds
Vision distortion
Feeling unplugged (powering down)
Sinking, (rollercoasted sensation)
Excessive yawning ( at time back to back and it can feel like my yaw will dislocate)
Rigid/stiff muscles ( my entire body stretches)
nausea
and extreme fatigue after episodes.
*************************************************
I had a ruptured aneurysm of the postieror communicating artery. I researched as much as I could about the location of my aneurysm. I only learned that it was not as common as the anterior artery (my spelling and thought process can get pretty bad as well), They wanted to coil it but told my family that it had to be clipped because the rupture was at the "Y" of the artery. I still don't understand any of this. The doctors told my family that I may have seizures but that it was highly unlikely since I did not have any during my 14 day stay in ICU. Given the strange events that have and are taking place since about 6 months after surgery, I feel/think other wise.
I have shared with neuro doc the numbness, tingling, muscle twitches that I experience from time to time. If these events had only happened once, I probably would have just let it be, but they happen every now and then and seem to be happening more over the last year.
I am comming up on the 5th year since my surgery. I am suppose to return to the neuro surgeon for a contrast CT. Because of the heart issues, the dizzyness, the brief momments of vision lost and the palpitations, I am starting to believe that I have another berry lurking somewhere in my head. Paranoid? I'm sure that I am.
I discussed my issues or mentioned I should say in my reply to "Akhol" in this post. The list is long and includes neuro, physical and mental issues.
You are so knowledgeable, and I am deeply appreciative for your help. I have great difficulty comprehending. The neuro doc tells me that I am very well spoken, in other words, I don't talk like something is wrong with me. I have days where I can't even speak. I stutter, lose thought and can't find words. My daughter tells me that when I am struggling to verbally communicate I freeze like someone has put me on pause/mute.
I think I could relax and accept the things that are happening to be if I better understood what is going on. I find all of my doctor's frustrated with me. I even had one doctor tell me that I couldn't/wouldn't understand it if they spelled it out. I don't know if he was trying to say that due to my brain injury I would not grasp it or if he was implying that I am not educated enough (12th grade education only) to understand it.