OK, I was just diagnosed and haven’t even seen my neurosurgeon yet. However, based on lots of reading, I think I can anticipate my course of treatment. I am curious to know what are some of the long-term side effects of the embolization-craniotomy-resection course of treating a cranial AVM? So far, it seems that many have continued headaches, fatigue, and the various AVM location-specific issues (visual, motor, etc.). I’m a little concerned about going back to work. (Like, will I be exhausted all the time?) Of course I realize everyone is different. Share your stories!
John, as you may know by now, the side effects can be different for everyone, depending on where in the brain the AVM is, the size, etc. I had the whole embo., crani, resection thing, but after a massive bleed. My AVM again was in my right parietal and occipital lobes. It’s been 2 1/2 years and I’ve got a whole host of, let’s say, “issues”. I lost most of the vision in my left eye. The visual deficit also affects the way I process visual information so sometimes things do not always look right, especially numbers. I am dizzy a lot and lose my balance and I often fall. (yeah me!) I also get lost very easily, eve in the neighborhood where I’ve lived for over 15 years. I have anxiety issues and can’t handle places where there is a lot of people, a lot of noise, or lights. It’s part of the over stimulation thing that affects many of us post op. I am no longer able to drive, for which others on the road should be thankful! Again, it’s the whole visual deficit thing and I can’t judge distance every well and some things just don’t look right! I also get tired very quickly. As a result of all of these things and more, I am no longer able to work and am on Social Security disability. However, I will tell you that most of my deficits are the result of the bleed, not the treatment. Who knows how well i would have done had I known about my AVM prior to my bleed? I probably would have made it through very well considering where my AVM was located. When you meet with your neurosurgeon, ask them what deficits you could possibly expect. They should have pretty good idea based on where in the brain the AVM is located. My surgeon told my husband that I probably would lose vision in my left eye, if I survived, which was questionable at several times. So, what I’m saying is that the brain is a fascinating thing and no one can tell for sure exactly how it will be for you. My husband had no idea what type of person he was going to have if I survived or if I’d be a “vegetable” for the rest of my life. I will tell you that I definitely defied the odds to not only survive, but be able to function relatively well and still care for my family and my kids. You’ve not had a bleed, which gives you a huge advantage already. Good luck to you and feel free to ask me anything!
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I had my craniotomy in August of 2009. It was located on my brainstem. I affected my vision and mobility. I still have lingering tingling sensations in my left hand and both legs and feet. I also am still numb on the right side of my face. Everything is improving at a very slow rate but it is improving. I am not working currently. I have not been released from my doctor. I exercise every morning and also walk 1/2 hour daily. By evening I am pretty tired. When I had my surgery I was extremely tired. Everyone is different and I makes a difference where you AVM is located. Good Luck to you.
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Wow, many thanks, Trish. God Bless you and stay in touch. You are an inspiration!
Trish said:
John, as you may know by now, the side effects can be different for everyone, depending on where in the brain the AVM is, the size, etc. I had the whole embo., crani, resection thing, but after a massive bleed. My AVM again was in my right parietal and occipital lobes. It’s been 2 1/2 years and I’ve got a whole host of, let’s say, “issues”. I lost most of the vision in my left eye. The visual deficit also affects the way I process visual information so sometimes things do not always look right, especially numbers. I am dizzy a lot and lose my balance and I often fall. (yeah me!) I also get lost very easily, eve in the neighborhood where I’ve lived for over 15 years. I have anxiety issues and can’t handle places where there is a lot of people, a lot of noise, or lights. It’s part of the over stimulation thing that affects many of us post op. I am no longer able to drive, for which others on the road should be thankful! Again, it’s the whole visual deficit thing and I can’t judge distance every well and some things just don’t look right! I also get tired very quickly. As a result of all of these things and more, I am no longer able to work and am on Social Security disability. However, I will tell you that most of my deficits are the result of the bleed, not the treatment. Who knows how well i would have done had I known about my AVM prior to my bleed? I probably would have made it through very well considering where my AVM was located. When you meet with your neurosurgeon, ask them what deficits you could possibly expect. They should have pretty good idea based on where in the brain the AVM is located. My surgeon told my husband that I probably would lose vision in my left eye, if I survived, which was questionable at several times. So, what I’m saying is that the brain is a fascinating thing and no one can tell for sure exactly how it will be for you. My husband had no idea what type of person he was going to have if I survived or if I’d be a “vegetable” for the rest of my life. I will tell you that I definitely defied the odds to not only survive, but be able to function relatively well and still care for my family and my kids. You’ve not had a bleed, which gives you a huge advantage already. Good luck to you and feel free to ask me anything!
Thanks, Jennifer. Almost a year into recovery. Good job. I wish you the best.
Jennifer Funke said:
I had my craniotomy in August of 2009. It was located on my brainstem. I affected my vision and mobility …
Oh, and about depression. For me it didn’t hit until after I got home (I was in hospital and rehab for 2 1/2 months). When I realized how much I had lost and what I could no longer do it was pretty bad. Also, not being able to work was huge for me. So, I take drugs for depression and anxiety and they help. You may not have any of these issue, no way to tell, I don’t suppose.
I am only 6 months post op, but I haven’t had any ill effects of surgery. I went back to work on May 3rd and yes it was hard at first. When I say hard I think a lot of people were nervous to ask me to do my job. They got over it quickly and then dumped a bunch of work left over from the end of last year/early this year. That was a lot of stress, but I gave it back to the people who ‘did’ my job while I was out. Right now I am just dealing with all the nerves that were cut growing back and getting to know my now strangely shaped head. I can feel the screws just under my scalp. I suffered from life halting headaches ever since I can remember and since the general pain of the surgery is gone I am happy to report I haven’t had one that I couldn’t take a couple of Tylenol and be right as rain. Before I would take an entire days dose within an hour or 2. I need more rest than ever, but it is a small price to pay. I do forget things but I don’t think more than a ‘normal’ person. In fact the year before my AVM discovery I was so forgetful and I would mix up words or #s. I started to think I was number dyslexic for years, but now I am think about it might have just been the AVM.
UGH! The embo! Yuck…I have to say I was honestly worse off after the embo than I was after the crainiotomy. After the embo I was in a ton of pain, I couldn’t open my mouth all the way and I was like a creature of the night and would hiss at the first ray of light. Given it didn’t take as long to feel like myself again, but still worse than surgery. Good luck when you meet your surgeon and don’t forget to bring a notepad and a trusted friend because 4 ears are better than 2. Maybe even think about getting a small tape recorder it might help to be able to go back when you want and listen to it. Remember ask questions. Lots and lots of questions and if there is anything you aren’t comfortable with then change things around until you are. Confidence and trust in your doctors will help you so very much.
john,
as everyone has pointed out each avm is unique and long term side effects from surgery will depend on size and location of the avm…but not only that will depend on your attitude towards the situation and the outcome…i had a very lage 12.5cm avm removed that left me with left side paralysis…doctors told me i would never walk again…due to the amount of damage caused to my motor cortex from removing such a large lesion…i refused to believe this …i had such a positive attitude and i knew deep within myself that i would walk again and sure enough now 2 years on i am walking 3kms a day on a treadmill…my doctors cant believe my recovery they tell me it goes against all the experts writting …and all i can put it down to is believing and staying positive …so my advice to you is no matter your outcome from treatment just stay positive and always believe …
I had three embos…first one was not good :(…second one was six hours long and I was ok wihtin two weeks…third one I was ok in one week…again, all individual but the more you hae and they are closed, I beleive or at elast in my case, it was ok. Going for my fourth August 3…will le tyou know then! Well and if I can help shout out my friend! xoxo Mare
I still get headaches though and was told not sue if they will ever go away…
Hi John,
I had my crainotomy on April 2, 2010, and tried to go back to work full time (50 hours a week for my company) and it was a mistake, I was exhausted and felt good in the mornings, but could barely think by the afternoon. I explained to my doc all this and he limited me to 25 hours a week. I thought my job would accomodate for this, but rather they took away my position that i have excelled at for 8 years, but they have given me a part time position although they say they cant promise it to me for the long term. My company has been very good to me since my stroke in November and have held my position this long, and even though i had other ideas of ways to keep my position (anyone heard of job share- I even have people in mind to help me with this) but they declined by ideas. I still have a position, which is good , and this all may be for the best, but it was very hard to admit that i could not go back full time as i had hoped. I have a 4 year old and was having to go to sleep before him every night in order to work the next day! crazy! So hopefully this part time situation will help me get back into the work world without loosing my recovery.
Feel free to reach out and chat - my email address is ■■■■■■■■■■■■■■■■■■■■■■■■
or you can find me here, i have been away for 3 months but realize i really need this support more than ever now.
Thanks for bringing up this topic. The good news is i have realized that a slower life may be a better life and a more apprciated life in the long run.
Your AVM sounds similar to mine in location; mine was in the left occipital lobe. I was 24 when diagnosed, and decided not to treat, technology what it was the, and when I renewed my options around age 50, much ambivilence among doctors whether to treat an unruptured AVM at my age. So I let it go but it eventually ruptured when I was 57 (2 years ago). I had an embolization and craniotomy-resection done at VCU Hospital in Richmond, VA (happened when I was away from DC area downstate). I returned to my stressful, busy job within 4 months, and have pretty much continued my work since, although aspects have changed. After initial half year of lethargy and fatigue, now I just have to remind myself I need to rest more. Lost my right perifieral vision due to the rupture and 5-inch blood clot in brain. Beside my visual deficites, which makes reading more difficult, I have some dyslexia and have lost some ability to spell words. Following surgery, my speech was very flat and lacted inflection (I slurred a bit too, which I did not notice). Speech therapy helped tremendously. I have a hissing sound in my ears and I think my hearing is not as good as it used to be. Organizational skills kind of when out the window. But weren’t that great to start with. Good news: no more headaches; AVM is obliterated. I took driving course to certify I could drive with my low vision (very satisfying to do this). I believe many problems would be moot if I had the AVM treated prior to its rupture. But left up to me, I was too scared to take that step. The rupture changed that. I probably had 2 episodes where I was under high stress and it seemed to bring on a visual disturbance, like I would get prior to a migraine. You are fortunate to live in an area of excellent medical reputation. Please let me know if I can answer other questions.
Thank you for sharing your story, Sharon. It does sound like there are similarities. I also can cause the visual field deficits by stressing my eyes, and location is my occipital lobe, although I now know that I don’t really have an AVM, but rather an AVF. If my doctor recommends being proactive, I am inclined to agree. I think it is likely it can be treated with an embolization. Thanks again for your reply and all the best.
Sharon Davis said:
Your AVM sounds similar to mine in location; mine was in the left occipital lobe. I was 24 when diagnosed, and decided not to treat, technology what it was the, and when I renewed my options around age 50, much ambivilence among doctors whether to treat an unruptured AVM at my age. So I let it go but it eventually ruptured when I was 57 (2 years ago). I had an embolization and craniotomy-resection done at VCU Hospital in Richmond, VA (happened when I was away from DC area downstate). I returned to my stressful, busy job within 4 months, and have pretty much continued my work since, although aspects have changed. After initial half year of lethargy and fatigue, now I just have to remind myself I need to rest more. Lost my right perifieral vision due to the rupture and 5-inch blood clot in brain. Beside my visual deficites, which makes reading more difficult, I have some dyslexia and have lost some ability to spell words. Following surgery, my speech was very flat and lacted inflection (I slurred a bit too, which I did not notice). Speech therapy helped tremendously. I have a hissing sound in my ears and I think my hearing is not as good as it used to be. Organizational skills kind of when out the window. But weren’t that great to start with. Good news: no more headaches; AVM is obliterated. I took driving course to certify I could drive with my low vision (very satisfying to do this). I believe many problems would be moot if I had the AVM treated prior to its rupture. But left up to me, I was too scared to take that step. The rupture changed that. I probably had 2 episodes where I was under high stress and it seemed to bring on a visual disturbance, like I would get prior to a migraine. You are fortunate to live in an area of excellent medical reputation. Please let me know if I can answer other questions.
Mine was found in 1988. It was about 3 cm, in the Left Temporal Lobe. This was discovered by having seizures in 1986 & 1988. The films were sent to us for some reason in 1989. Pat (my wife) took me and the films to the doctor. Then, they found the AVM in 1989. Then the Crainiotomy was done (4/3/89 Dr. Robert Crowell, UofI-Circle Campus), but they couldn’t get all the pieces. After 24 hours of surgery, they gave up and cleaned up the mess. So, a new approach Gamma-knife surgery (8/25/89 Dr. Ladislau Steiner, UofVa) was done. In 1989, Gamma-knife was being developed.
I’ve had tests over the years since then. The medical doctors all say it’s complete and no problems. However, that’s not what I think. Recently, I’ve been working with a psychiatrist. She had me tested. The guy was able to find that massive brain surgery (and all AVM brain surgery should be called massive) causes changes to the brain.
The only question is what were the changes. The testing is not exactly as nice as the medical doctors would say. When a lot of pieces are cut out, things don’t work the same. While I’m upset about these changes, it’s good to check out the other people on this website. A lot of them have had a much rougher ride than me.
Bring someone with you to all the doctor talks. Write things down. Be prepared for less than 100% recovery. Good Luck.
Your story is my life to a T. Doctors keep pushing me to see a counselor but what i really need to function is topamax. I was on this before and it stopped my non-epileptic seizures but made myammonia levels too high. Is there a med to counteract this so I could take it again. I have seizures everyday,always off balance and my eyesite just gets worse when seizures happen, then it goes back to normal bad.