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AVM Survivors Network

I have an AVM in my Cerebellum, Anyone else had one there? What was your Treatment?

I had a hemmoragic stroke 3 months ago in my Cerebellum and they have been looking for the cause ever since. After 3 MRIs and 2 angiograms they found a “small” AVM in the cerebellum, but i dont know much else yet. I was in ICU for 2 days and reg floor for 2 days, and recovered at home over the last 3 months. I had lots of issues with balance and walking and vision at first, but that is almost completely improved. I still have some headaches and weird dizzyness in some parts of my head and feel like i process info more slowly than I used to, but I can read and take notes and remember well now. Sometimes I say things that I don’t mean to (use the wrong words) and still have a little trouble with swallowing but i am well enough to go back to work. I go back full time on Monday and oddly, also have my first follow-up appointment with my Neurosurgeon since finding the AVM. I think he is going to suggest radiation for treatment, but i am honestly terrified of even treatment i have read about as I do not want to be a patient again. But of course Im also scared of a rebleed. Has anyone else had an AVM in Cerrebellum? I’m curious what your expereince with treatments have been. Thanks so much in advance for your help. Just reading other people’s stories tells me that I am not alone, but this is scary stuff.

Larisa
check this out
http://www.avmsurvivors.org/forum/topic/search?q=Cerebellum+

Hi Larisa,

My 15 year old son had a major bleed in his cerebellum last June. It took us until about 2 weeks ago to find out what caused it. They now have also found a small AVM in the cerebellum. Doc gave us the option of radiation or surgery. My son wants the surgery to be done with it, but it is so scary to go through brain surgery again. He is doing great, a little bit of double vision when he looks to the right, but other than that, he feels wonderful.

Our Doctor would not lead us towards any treatment, but we are going to get a second opinion next week from a surgeon that only works with vascular issues. Pittsburgh, where we are, is real big into the gamma knife, but everything that I have read so far doesn't make me feel too good about it. Please keep in touch and let me know how your follow-up went. I'll keep you posted on the second opinion.

I had an AVM in my cerebellum. I had it diagnosed & removed in August of 2010 by craniotomy. It was on the outer, back part of the cerebellum, so they could ‘easily’ get it with surgery and I would be done with it. I’ve had balance issues too and trouble processing stuff, saying wrong things too, & depression. It’s like the surgery amplified all the feelings and thoughts I had before plus adding a few new ones. I’ve had trouble dealing with people and them not understanding things or me not understanding them. I was driving a few weeks afterwards, I get impulsive, have a bad memory, silent migraines (aura and everything but no pain, thank God). I had (and still have) trouble making decisions, sometimes I just stop and get caught in a loop it seems. But now I’m feeling more like normal (after about 5-6 months)!! If you have any other questions, just ask!!

Hi Larissa - I did a search on cerebellum avm, and your post came up. I, too, had a cerebellum avm and had a crainiotomy and embo. 3 and 2 years ago…my memory is decent…balance pretty much sucks and everything is much, much slower…I have a background in ballroom dancing, behavioral counseling, environmental consulting, finance, disability disorders (ironic, right?) and public relations. I have a video somewhere on this site if you want more of my story.

Hey Larisa. First off I’d like to wish you the best. Please take a look at my page for info on my avm journey so far. I had my first bleed in 2009. I’ve had about 3-4 since then. My docs told me that surgery is not an option as mine is deep in my cerebrum. I had stereotactic radiosurgery done in July 2010 and an embolization done a few months back. I have trouble with my memory and always carry a notebook with me. If I don’t write things down, I can’t remember that they even occurred. It’s been a very tough thing to deal with. I don’t drive without supervision anymore either. I have constant headaches and often severe pain in my back as well which are symptoms left over from the bleeds. I’ll have another check to see the status of it in a few months but have been told that there is permanent damage that’s been done because of the bleeds to my brain. I’ve had awesome care by some of the best docs at UCLA. I understand your not wanting to be a patient again, but please don’t let the uneasiness lead you to make poor decisions about your health. Fear means you’re human and you’re recognizing the risks of your condition. Acknowledge that what you have is serious and take the reins. Best to you.

Larisa,
I had an avm I’m my cerebellum 5 years ago that ruptured. I did have surgery to remove it. Balance and motor skills were affected but by this point I’ve regained a lot of function. It ruptured when I was 13 and well it’s probably best that way. As you age your chances of rupture increase and the results could be worse. If its safe to remove and you have a good surgeon I’d say you should have it removed. Just waiting for it to maybe rupture my doctor said is like waiting for a ticking time bomb but of course mine was huge so they’re probably all not as serious. Good luck

After having crazy vision problems and terrible headaches a CT scan revealed the AVM in my cerebellum. Thankfully it was caught before it bled. I have had a diagnostic angiogram and after talking with my Dr at the University of Wisconsin (and doing A LOT of research on my own), we have decided to go with embolism then open surgery to remove. First embolism is scheduled for next month.

Hi, I just came across your story. I too had an AVM and aneurism in my cerebellum. Last December 17, 2013 I had the AVM removed and the aneurism clipped. I am still recuperating. I can do just about everything but am still very dizzy most of the time. I think it is from the swelling at the rear of my neck. I have a problem going into places with lots of stuff. Costco, Dept. stores etc. I am told I need to be patient, Hope this helps.

Just know your not alone & it is scary stuff before, after & even years later…try to be positive & have faith in God that everything will work out just fine…God bless and keep us all posted

I do not know if you have made any decisions about your avm, but I thought I would tell you my story and try to make it short. I had a brain bleed back in January and they did an arteriogram where they found both an aneurysm and an avm. The aneurysm had to be coiled (this was not an easy thing and I was in the hospital for 2 weeks, but had no problems afterwards.....actually, it took 3 months to be all ok again, but I believe that was pretty miraculous! Anyway, my surgeon told me to come back because something had to be done with the avm. I was feeling great, back to normal, and really did not want to go through what I had recovered from....again. He gave me a choice of gamma knife or surgery. Since they were not sure what bled....the aneurysm or avm, the doc wanted me to get it done as soon as I felt back up to it. I hated the fact that the gamma knife would take so long and the % of getting it all was not that great, plus radiation into my brain scared me......so, after getting a 2nd opinion,, I chose surgery. I had it done Monday, April 20th and am now home. I feel good....still have some headache issues, but nothing else. They did an arteriogram to find out if the doc got it all and it was 100% obliterated! I am thankful I did it and now need to heal. It is just so scary going into brain surgery not really knowing the outcome. I had many prayer warriors that got me through. I am blessed and know I am a miracle. I wish you the same. If you have any questions, please feel free to contact me and ask anything. I went through every emotion and though possible and even got physiclly sick from worrying!! Hope this helps with any decisions. I just know it isn't good to leave an avm in your brain whether it has bled or not....

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Hi Larisa,
Over ten years ago I had a bleed in the brain. Found out the bleed was from a burst avm. I waited a year before I had a craniotomy to remove the avm. The wait was agonizing but at the same time I was distracted because of the strides I was making in my recovery. My atxia, diplopia and nystagmus were really bad but with therapy I had many accomplishments. I can walk without a cane(though, it will come out when I have to walk long distances or on uneven surfaces). I can do sports again(played in high school)-I don't play very well, but my nephew and niece(8 and 6 yrs old) don't seem to mind. I am able to drive and can ride a bike. It's definitely not been easy but my focus on achievements and having patience with faults and failures, improve and sustain me. I also have been fortunate to have family and friend support
I wish you strength and faith. Take Care.

Hi Larisa,
December 2013, I had a cerebellum bleed. It was discovered through MRI, angiogram etc. that I had both an AVM and aneurism of the cerebellum. The surgeon at Cedar Sinai Hospital said I had no choice but to repair them. The AVM needed to be removed and the aneurism clipped. It was explained to me that they were both in a location that they could "easily" access. This was all after suffering what I called "Migraine" type headaches for about a year. The Doctors at Cedars decided to wait for the bleed to repair and "clean itself up." They waited about a week. The surgery went well and I was home in a few days. I was extremely dizzy, had no balance. I waited 3-6 weeks, as this is what I was told it would take to get normal again. then 3-6 months, then a year. I was miserable. Incrementally, I got better. I kept pushing. Walking, walking and more walking. I found that all the Physical Therapy was a waste. I just needed to walk. It is now 16 months since surgery and i can honestly say that I am on my way, I am almost there, I can drive a car, ride a bike, through a ball and do just about anything. Once in a while I get a bit out of balance but no big deal.

Listen to your doctors. Get a few opinions, not too many, and be persistent. You will be fine! This site is your friend. It helped me a great deal. I got angry with my doctors when things did'nt go exactly as they said they would but eventually they did. Pray to whom ever you like to pray to. For me it was my wonderful family. They are the people who helped me more than anything. Best of luck! Call me anytime 310 ■■■■■■■■

I just had my 2 year anniversary of my bleed on the 25th of April. My AVM is in the Cerebellum as well. They did an angioplasty with glue the next morning to stop the bleeding.
I had what they call a SCH stroke. My left side was effected. I can walk with out others being able to notice I had a stroke. My fine motor skills are not so good. Working on those and strength in the left arm.
I was in the hospital for about a month. I was living in London,UK at the time. I returned to the states and in September of 2013 I had gamma knife surgery. I really only had 3 options 1) just leave it but I

was told if it has blead it has a higher chance to bleed again. So for me that option was out. 2) surgery to take it out. With it being where it is I did not like all the things that could go wrong.3) Gamma Knife. I picked GK. I guess you never know the path not taken so you have to hope you did what you felt was best. I feel the GK set me back a bit but I am getting back to where I was before the GK. I had swelling in my brain but it was many months after the GK. Like over a year for me. It was only around the AVM. I went steroids for 2 weeks. Doing much better now. My balance is still a bit off. I think that’s more about where the AVM. Memory not to bad. I get fatigued very quickly that’s one of the hardest things. I do have headaches since the GK but I am learning to deal with them. Feel free to read my story and inbox me if you have any questions. It’s a very personal decision and visit several different doctors and see what they say. Then you have to see works best for you.

Prayers and hugs,

Niyani

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