Hello survivors.
I’m only about 8 months post-op. I may be AVM free, but have another angio in December to confirm this.
I recently started experiencing increased headaches, flooding, and what feel like focal, or partial seizures. I was told to go directly to the ER when feeling “absent” or not all there. I was discharged and have an EEG tomorrow to check for any abnormal activity.
Has anyone else here experienced seizures after AVM resection? Wondering how this phase works. I’m on Keppra and hope it won’t be for life. Feel dizzy a lot more than I used too. Any help or insight on this issue would be greatly appreciated.
Thanks in advance.
Sincerely,
Dick
Hi
Sorry to hear about your seizure I also had a seizure after surgery to remove my AVM’s 16 months after. I too am on Keppra my neurologist has said there are all different types of epilepsy & Im being treated for epilepsy caused by brain surgery. I see my neurosurgeon tomorrow so will be asking questions as I feel the questions I asked haven’t been answered properly. I’ve had an EEG but the person who performed it has said it probably won’t be a true reading as the medication will effect it. I’m just as confused as you are at the moment but at least I’m not the only one, if I get any answers tomorrow I’ll let you know. Massive hugs & I hope we get the answers we need.
Dick I just wanted you to know that I am post AVM stroke and I also had seizures following my surgeries. My AVM was in my right cerebral region and I had three surgeries to get rid of it. I cannot recall the type of seizures I had, however, I do remember having slurred speech, feeling the pounding of my pulse throughout my body and I could hear the radio or television even after they were turned off. I started off on Dilantin and quickly learned I was allergic to that then was on tegretol. I am happy to inform you that this many years later I haven’t had any seizures for many years, however, I still do see a neurologist every four months and do take a low dosage of topimirate to keep me seizure free. It seems to be what works for me. Good luck to you.
Hello, I’m on high dose of Keppra due to my pregnancy.I’m now 3 months post -op from my bone flap surgery . I’m taking 4 pills of 750mg of keppra. I don’t want to be mentally depended on the drug forever. I get extremely nervous for not taking it on time. I’m very mindful of taking them. I had 2 minor seizures for taking them 10-15 mins late. I’m starting to weaning off the Meds with the help/monitoring of my uncle n family members. I let them now so they can look out for me in case I have seizure episodes. I started to wean off on 9/28, by only taking 3.25 pill instead of 4 pills. One time I was an hour late, and I felt fine. My current goal is to eliminate .25 pill every 10 days, eventually I want to only take 3 pills a day until my next visit with my neurologist.
I am 2 1/2 years post AVM removal and am told that I am having seizures after having 5 episodes of what I think are muscle spasms. I feel the pulses in my affected/weak side and begin having tremors from my foot up to my arm. I am now taking Kepra 1,000 mg a day. I am going for a 2nd opinion on Thursday and am praying for good news. I don't believe they are seizures, but indeed muscle spasms brought on by stress and overworking my body. The dr also suspended my license for 6 months and it has been very difficult for me to lose that independence. I've never blacked out or zoned out and know fully what's going on around me. I've had 2 EEG's that were negative and 2 MRI's that were also negative. I'm hoping to be weaned off the medication and be assured that it's just a muscle spasm I'm experiencing. The Kepra will also make you dizzy for a while...especially if you are taking a higher dose. I was also told that an EEG will not show any seizure activity unless you are experiencing one while being tested. I would also question the angio as it is invasive and could be dangerous to undergo again. I'll say a prayer for you that all will work out.
Hi Dick, Some great experiences shared here so far, Obviously I would say that the best course of action is to consult with your doctors, Ensure that they are aware of these possible seizures and this way they may be able to change your meds or even just change the dosage, Given the choice of having a seizure and having to take 2 pills each day, Then I have already made my choice and take my 2 x 500 mg of Keppra each day on time also. But my doctors gave me a choice when I asked about having to take Keppra forever. He said that if I wished to stop taking it I would have to stop driving and that I could have a seizure or may not, I thought that this choice was a no brainer since I have no side affects from the keppra that I am aware of. Take care and let us know how it goes.
I'm sorry you are having a rough time. I have and have had a million questions myself. I had my AVM/aneurism removed in Feb of this year, embolizing and surgery was my only option due to the size. I also take keppra, and absolutely hate it. I actually went for an EEG yesterday, EKG, blod work blah blah blah. I had an MRA last month, and I am AVM/Aneurism free according to the test. I also have an Angio scheduled for October 20th to confirm all post op results. After surgery, i did experience some pressure, and had some twitching here and there. Mine was in the upper right parietal/frontal lobe, which had left my whole left arm and hand a bit numb, and my vision a little off in my right eye. As of now, most if not all of my issues have corrected themselves, and i have not had any more twitches. The plan is to wean off the Keppra during a 6 week time-span. No driving, no shooting range, etc. I have had some "off" days as far as feeling dizzy, head pressure, and headaches, but they have been far and few between as of now. I always chalked it up to everything is healing, and blood is getting to places it has never been to before; it takes years to fully heal, and scar tissue is forever. I will update as I move forward, and hopefully there aren't any hiccups along the way. Good luck and stay positive!
Hello...I am sorry you are having this after what you have already been through...I was a Nurse Manager in the Emergency Department when I had a bleed, I had my AVM resected. 2 months post op while in Rehab I had my first remembered seizure, it was a grand mal...They immediately put me on a dosage of dilantin that proved too little...I to this day take 600 milligrams a day...which is double the usual maintenance dose..that is 15 1/2 yrs. Over the years they have tried to change that med and I am either allergic or my blood pressure becomes too low or I become so zonked I am not alive and drooling...as a nurse I am versed in almost all of the meds and dosages and understand the issues...I have mostly "absence" "petit mal" "partial complex"...as the years have come and gone I have had fewer as healing is very prolonged after this surgery while the brain reconnects and nerves reconnect and regrow...I do have moments of what I call the fear factor, with the racing heart, panic and numbness in my right extremity to the thigh...I go to ground and call anyone around..It has now been 2 yrs since my last bonafide seizure...and only a few fear factors...I am doing well and remain on dilantin....if you have any question I will try to help answer feel free to let me know either here or email ■■■■■■■■■■■■■■■■■■■
C
Hi Dickkirkland
I had one seizure several in 2005. My first treatment was in 1984, the last treatment in 2004.
I have survived 4 strokes. I am also taking Keppra.
If you want add me as a friend and I will try to solve your questions. At first I started to drink more coffee than usual to get rid of my headaches and the dizziness, now I feel much better.
God bless you.
I had AVM surgery in 2011, I was never told about seizure possibility, suddenly one day about 3 r 4 months after surgery got first seizure episode and then went for EEG which showed abnormalities in my brain signals or neurons then they put me on Dilantin which did not prove good to me and one after other I got till now about 6 seizure episodes and now am on Keppra 3X500 rwice a day and well under control from last 2 years.
Best advice your doctor can give u. But important is that do not miss your Keppra it’s time is important, when I got last seizure despite never missed my Keppra dose then my doctor was surprised and he sent me for sleep study which revealed snoring issue and sleep apnea for which they gave me machine to have a mask to wear to avoid snoring and apnea now I am using it regularly and ok.
You need to be in good consultant with your doctor and not to be worried, try to remain worry free relax and avoid panic Ness.
Panic Ness and axiety are common symptoms.
Hope will be helpful and stay blessed.
Any further to share experience can use my E mail.
Will respond u.
Keep Updated.
I was on Dilantin as a prophylactic measure following my avm bleed/stroke/resection in July 2013. I did not have a focal seizure until October 2014 and have had three more to date with no particular trigger or regularity. Neurologist did an eeg and saw no abnormal activity, but added Keppra to my anti-seizure med routine. I have not had a seizure in almost 3 months. The doc says that unless I pass out there is no reason togo to the ER as mine pass within 1-2 minutes…I remain aware of my surroundings when one occurs. I - like you - hope I will not be taking these meds for life, but if that’s what it takes to be seizure free, then so be it. Hopes this helps. Please be well. Make sure you do not miss a dose
I’ve been researching this for a long time bc since my surgery I have experienced a couple seizures. I’ve heard neurologists try to get patients on marijuana that’s low THC, but high in CBD. Haven’t tried it yet for myself, but after all the videos I’ve seen and the Dr.'s that I’ve heard to recommend it I may have to. Hope this was somewhat helpful to you.
Hello, Dick! My 15 year old son had seizures post AVM/surgery. He was originally on Keppra and found that it made him shaky, slow in speech, muddle headed like he was in a fog, and he had an upset stomach. We didn't like how it changed his personality. I researched the affects of anti-seizure meds on patients and never found good news. We had a friend suggest using essential oils, which sounded crazy to us for such a big medical problem. However, when I researched oils and seizures I found all kinds of positive testimonials. We agreed to test them for one month. We immediately started seeing improvement in our son's seizures so we extended the trial another month. He is now almost 3 years post AVM/surgery and is still only using the oils. He did have one grand mall about 6 months ago but told us he hadn't been using his oils regularly. He was put back on Keppra temporarily but taken off again when we told the neurologist that we wanted to test the oils again. He has been seizure free these 6 months as well and will start driving again this week.
Also, the EEG will show any abnormal "sparking" in the brain that could be causing seizures and the angiogram is the best way, albeit not the most fun way, to prove that you are AVM free. I think both are a necessary evil.
I pray that your healing goes well!
I had experienced something similar to this only recently being 4+yrs after surgery...had MRI & EEG that came back normal but still have felt dizzy, light headed and confused at times...due to see a neurologist next month for further consultation and pray everything works out for you dickkirkland...God bless!
Hi Dick,
I'm 53 and 18 years post-op my AVM resection, left parietal. Get used to the idea that you might be on seizure meds for life. It's no big deal. It's just part of your routine like putting on your shoes or shaving. They gave me dilantin in the hospital and it gave me a terrible rash.
That feeling of being "absent" or "not all there" is not a pleasant feeling. Sometimes it's called "brain fog."
I had seizures after my AVM resection. I was on Keppra and Lamictal and I had 3-4 seizures/year. I was also on Neurontin + Lamictal for a while, too. I think I had, maybe, only 1-2 seizures/year.
The BEST drug, for me at any rate, was TOPAMAX. I believe that it is a newer drug than Keppra or Neurontin and I took it for several years. It totally stopped my seizures and didn't give me additional fatigue like the other drugs. And a few years after being totally seizure-free I was gradually weaned off of that too. So now I only take Lamictal for seizures. If I have that "absent" feeling now, it's probably because I missed my dose of Lamictal or that I'm overtired.
Now, scrolling down the posts, I see that Juanita also had good results with Topamax (same thing as topamirate). I think it's very powerful.
I also had treatments with hyperbaric oxygen therapy within the first few years after the AVM resection. Neurologists won't recommend it because the the medical literature is inconclusive but it's not going to harm you if you try it. I was bothered by feelings of brain fog. I felt better after the HBO treatments. I had 20 sessions, a break and then another 20 sessions. I cannot say with certainty whether that treatments helped or if my brain would have healed anyway over the course of time. But I do know that I felt more alive and refreshed after my brain was flooded with pressurized pure oxygen. I felt "clearer" immediately after I stepped out of the HBO chamber. I thought that the degree of cognitive improvement diminished over time so I stopped after 40 sessions. Insurance won't cover it. But it seemed to me that it helped and that it was something more than the placebo effect.
I also tried so-called "brain formulas," herbal medicines from companies like SMART NUTRITION. I don't know if it helped or not. But I don't take them any more.
Following up on the post by Justin Kelly, Dr. Devinsky (the doctor who was interviewed by Dr. Sanjay Gupta on the CNN special report on low THC/high CBD marijuana) was my neurologist at NYU for many years. There's no harm in asking your doctor about it, but you didn't report that you were having up to 100 seizures a day like the little girl featured on the CNN story. My educated guess is that it's probably not right for you, but you risk nothing by asking a question.
Following up on the post by aadar47, I also had sleep apnea. I was overweight and I
snored. I lost 90 lbs. with the lap-band. When you are middle-aged everything starts to sag, even the tissues of your throat. And a lack of oxygen is especially dangerous for AVM survivors. My AVM rupture deprived my brain of oxygen. So, even after the AVM was removed the doctors wanted to make sure that my brain wasn't deprived of any more oxygen because of the snoring. So now I just sleep on my side and I sometimes use a "bumper" called Rematee that helps me position myself. I don't know if this part is relevant to you, but you did write "any help or insight."
Thank you for this support! I had the EEG today and will let you know about my results as well. I wish you the best. I talk to a new neurologist about this new facet of my recovery tomorrow.
Thanks! Sharing your experience helps. I hope to be seizure free one day too. Hadn’t anticipated another leg in this journey.
6 months post right frontal craniotomy and AVM resection I had frequent focal seizures and a couple of minor absence which have all stopped since March this year as a result of finding the correct balance of medications and combination. I am stable and seizure free on 500mg Keppra AM & PM, 400mg Epilim AM & PM, and 400mg Dilantin PM. It just took awhile for my neurologist to find the right dose and combination. Make sure your diet is healthy and that you get plenty of rest and as little stress as possible so that your body has no additional stresses. I wish you well, it is frightening when you don’t understand what your body is doing or what is going to happen, but if I can impart one piece of wisdom to you after my considerable stressing it is this, make sure your neurologist is someone you have confidence in and make sure you listen to your body, let your GP and specialists know of any changes, physically and behaviourally, judge nothing to be insignificant allow your team to guide you.
Hello,
I had seizures before (misdiagnosed) and after my AVM surgery. Hoping yours will be temporary and you will get over them. My seizures became drug resistant (I will go to my grave thinking side effects from the anticonvulsants were the main problem. Eventually, I overcame the seizures using diet and behavioral approaches to stopping them. There's a large online group I belong to called "Coping with Epilepsy" http://www.coping-with-epilepsy.com/
You will likely find plenty of support and people to talk with about meds and such there. I hope you will do some searching on side effects of your meds and ways to deal with them. You can check out my post on using behavior control for seizures on my blog. My essay on my major stroke from the AVM is there also. http://wwwzoeblog51.blogspot.com/
Your pharmacist, if not your doctors, may also be a good resource for you to get information on the side effects and how to minimize them. Wishing you the best and hope the seizures pass as you recover from the surgery
You’re totally correct. I’ve had an EEG this week, CT, and an MRI last week. While I’ve been in correspondence with my neurosurgeon and other doctors, it is surprising that these seizures aren’t really “advertised” as much before or after resection. I totally understand that medical advice isn’t something that should be sought out on the forum. Thanks for support and mentioning the choice they gave you. I reckon I’ll probably be given the same one soon. 
I’ll let you know what happens. Hope you are doing well.