I’m new to the network.
My cerebellar AVM ruptured in 2017, since then I had months of rehab and a craniotomy. The surgery was a success, but a year later I found out my AVM had returned.
Embolization is not an option, and my surgeon said that Gamma Knife or another craniotomy pose similar risks. I’m not thrilled about the idea of another craniotomy, but as I haven’t had Gamma Knife, I don’t know what to expect for possible symptoms.
I am 19 now, and afraid of another bleed.
Hi Ella, and welcome! That is a big question you pose…I hd gamma knife but was in a similar situation trying to decide. Ultimately due to location gamma knife was less risky, although there was always the thought of another bleed. I was fortunate, my neuro surgeon presented the risks and answered my question f it it was him, what would he do. He wouldn’t tell me what to do, but did tell me what he would do. I thanked him immensely and went tp gamma knife, made my decision easier. I always said I was at peace with my decision, and once advised it was obliterated, it became the right decision. Take Care, John.
Thanks for your response. I’m so glad Gamma Knife worked well for you. Yes for my last craniotomy my neurosurgeon basically said that surgery was the way to go. However, this time around he doesn’t seem so sure what the best option is. If you don’t mind me asking where was your AVM located? And did you have any weird symptoms from the radiation?
Mine was left temporal but on the inside of the lobe, making it difficult to get at. I had some minor head aches around the 6 month mark, often caused by swelling as the radiation. I also had some “ice pick” headaches that came and went but subsided and haven’t had any for a long time. I had some fog, but really was fortunate in experiencing little.
I am very sorry that you have to go through this. I had a similar story in some way so in very short here is a summary.
I had a brain bleed at 18 in my cerebellum like you. Discussion about embolization, crsniotomy or GK: a first doctor (who I discovered was the one who just made th hospital buy a gamma knife machine) said I should do GK (without telling me that there is other option). Fortunately I asked for a second advice (this is my biggest learning and also what I would advise you … ALWAYS ask for a second advice on everything !!!). This second doctor told me that he would never do GK to someone that young : but please be careful with my story … He might have said that because he thought that I had other option. So I am not saying that every young person should abstain from GK, this is just my story. This doctor sent us to a team of neuroradiologist (the one responsible for embolization ) and neurosurgeons (the one responsible for crsniotomy). And this is my second advice to you is that if possible try to ask to a TEAM with every profession involved. They decided to go with embolization as they did not want to take the risk of the crsniotomy. Unfortunately they where no able to close the whole AVM. So I was scheduled to go back for a crsniotomy 2 months later. But when I arrived they saw on the angio that the remaining of the AVM has began to shrunk. So they decided to not do the surgery and wait. I had regular control where we could see the AVM shrink and shrink until one day out of nowhere it has regrowth. I then had a successfull craniotomy, I had a follow up during 1.5 years showing no raining of the AVM so they now stopped to follow up and I am considered “heal”.
This is just my story and every one and every AVM is different.
I have a few question for you since we share similar stories if you don’t mind. I did rehab for years (I took this part out since my surgicsl journey was already long to explain) and still have some deficits today eventought I am now studying at uni.
What kind of rehab did you do ? Any special method ?
What help you the best ? Do you have any other advise to help with the tiredness ( do you have any my the way ?) Like nutritious advice etc…
And what are your remaining deficits (if any) ?
I send you lots of courage and love during this though time !
Thank you for sharing this with me.
My last craniotomy my neurosurgeon basically said that surgery was the way to go. However, this time around he doesn’t seem so sure what the best option is. And the other specialists are hesitant to recommend anything because they are concerned with it coming back.
My bleed was two and a half years ago now, and I’m very lucky to not have any server deficits left since my bleed. Originally, I spent about ten days in ICU and then another ten days admitted to the step-down ward, before being transferred to a rehabilitation center. I stayed as an impatient at that hospital for about 3 and a half months. My rehab mainly consisted of PT and OT, but I also had speech therapy (for a mild impairment). After that I had my AVM removed, and then I became an outpatient for therapy at the same facility for a couple more months before returning part-time to school.
I did OT for several months after that, and I still currently do PT once a week. The main problems I still face are challenges with my balance (I can walk no problem, but running and jumping are still challenging) also my coordination is a bit of a problem sometimes (carrying a full glass, or doing anything that consists of repetitive quick motions). I also still get fatigued, not as much as I used to but what did help me was simply resting, or taking breaks. I also sleep 9-10 hours a night. I have some nerve pain in my leg, which I’m not entirely sure is directly or indirectly related to my bleed.
I’m also currently studying at Uni now
All the best,
My daughter is the AVM survivor. She also had a cerebellar AVM bleed in 2017 (January) so just over 3 years ago. She was almost 10 at the time and is 13 now. It’s been a very difficult recovery for her. Her bleed was described as catastrophic by her surgeon. She had to get a tracheostomy and a feeding tube in her stomach. She also didn’t speak a single word for the first 6 months or walk until 9 months after. All together she was in the hospital for 9 months and basically missed 1.5 years of school. Fortunately since she passed about 18 months post rupture, she has made a lot of progress but the effects of her stroke are still a huge struggle. Anyway, I’ll tell you about her treatment. Initially she had to have an emergency craniotomy about 2.5 hours after the bleed. Almost the whole AVM was removed. Six weeks after that she had an angiogram and they were able to do an embolization of what was left plus a small aneurysm near the AVM site. An MRI a few months later came back clear so we thought it was taken care of. But, when she had a second angio 1 year after the rupture, they discovered either regrowth or residual vessels that they hadn’t been able to see previously due to swelling. Either way, the surgeons said it needed to be treated. AVMs in young people are at risk for regrowth and therefore rebleed. They recommended another surgery for 2 reasons. They said cyber knife (like gamma knife) would take 2-3 years to know if it was successful and brain swelling was a possible side effect. And they felt there was basically a pathway there due to the cerebellum being “blown up” there already. Horrific but good I guess because access to the site was relatively easy. He was able to get at the residual without disturbing healthy brain tissue. Here’s the great news. Compared to the first surgery and everything that came with it, the second was a cinch! My daughter was in the ICU for less than 3 days and was doing so well they just discharged her to home from there! She had almost no pain, the incision healed super fast and no hair shaved (after the first surgery she looked like she’d been in a fight with a lawnmower and lost!). She missed most of the rest of the school year (1.5 months) but no big deal as she was in grade 5. The biggest issue was probably worsened fatigue for about 2-3 months.
Hope that helps.
I have a quick question for you. Was your rupture a complete surprise or did you have symptoms beforehand? My daughter’s came out of nowhere.
Also, do you feel like there was anything different while you were growing up that when you look back, you now wonder was a sign?
My daughter used to get these periods of feeling extremely nauseous and sometimes she would throw up a little. Those spells normally happened at night or early morning and 2x after flying it happened. Nothing since recovering though.
Wow, your daughter must be such a strong warrior. I am sending her love and wishing her the best for her ongoing recovery.
Thank you so much for this information. It is so helpful to hear from others.
My rupture was a surprise. I had no symptoms before the bleed. I was actually on vacation in New York, so I had I’m craniectomy there and was flown back to BC ten days later, where I had rehab and my AVM removed.
If you don’t mind me asking was your daughter’s AVM considered large? And was she very nauseous after her bleed? I was nauseous for months until my surgeon discovered a tear in my dura during my craniotomy.
Yes, Katie is pretty extraordinary, but I think all of you survivors are. It’s been a very hard journey as a parent but nothing compared to the person it’s actually happening to.
The whole ordeal has completely changed her life. She couldn’t stay in French immersion because she had missed so much and she couldn’t think fast enough to keep up the French, so she’s had to start at new schools and the social impact has been brutal. Some people say these puberty years would be hard no matter what but I find that kind of insulting. She’s facing anything but the typical challenges of an adolescent. She has come so far, but compared to other kids her age she’s very different. School is a bit of a nightmare so this quarantine period has actually been great as far as she’s concerned. I am making very few demands but one thing I insist on is at least one walk around the block per day. So far so good. We got her a dog —really sweet golden retriever—so that helps with motivation. You mentioned you still do physio, what do you focus on? Katie hasn’t done formal physio in almost a year.
To answer your question about the size of the AVM, no one really knows how big her AVM was. The bleed was so severe that the AVM was blown apart by it. I have read that smaller AVMs are more likely to bleed because the pressures tend to be higher. That’s scary that you were out of the country when this happened to you. I’m glad it all worked out.
She was very nauseous for months afterward. It started about a month after the bleed. She vomited daily and sometimes severe to the point where she had to be rehydrated by IV. But I started to connect it to her trach. I noticed she would cough and gag and then vomit. We were working hard to wean her off the trach when she was transferred to rehab. The vomiting increased in frequency and severity and we had to go back to McMaster children’s in Hamilton where she’d been at first. Brutal. There I basically insisted they remove the trach. And then she didn’t throw up for 13 days in a row! She still continued to have a bit of vomiting but more connected to being moved from bed to wheelchair and vice versa. So I think hers was different in cause than yours. That area of the brain is definitely connected to nausea though. There was a boy in rehab with us who displayed such similar symptoms/effects to Katie I thought for sure the same thing had happened to him. Turns out he had had a cyst tumour removed from his cerebellum.
Ok sorry I’ve written another novel. I actually made a video about Katie’s recovery. I’ll post the link here.
Let me know what treatment you decide to go with.
Katie and you and your family and friends are A M A Z I N G!
That’s a wonderful film of Katie’s trouble and triumph! Thank you for sharing. It is a great encouragement to parents and patients as to what is possible, with lots of hard work, even after a near catastrophic bleed. Well done all of you! I think it is at least as difficult for parents, carers, brothers and sisters, not just for the “victim”.
Thank you for sharing. I know there are others here who will gain lots from the video.
Very best wishes to you all,
Thank you so much for sharing all this. Yes, the social aspect is a little strange at first. I was in grade 11 when I had my bleed. Thankfully at GF Strong rehab center, they had some school teachers for adolescent patients. I was able to catch up/ get passed in a few subjects. When I first returned to school part-time I was really anxious, but most of my classmates didn’t treat me any differently (which was nice), the counselors at my school were a nightmare though.
I can’t imagine what it must have been like for you going through this. My surgery was 3 hours longer than expected and my parents got no updates on what was going on throughout the whole thing, my mom said she thought I died. My mom missed months of work during my recovery. Once I was out of the ICU she stayed at the hospital and rehab center every night with me. I couldn’t have done my recovery without her, and I’m sure it’s the same with Katie.
I saw the therapy dog in the video, and it reminded me of the therapy dog that would come to GF Strong every week (definitely a highlight). That’s awesome she has her own dog now. I know animals can be such a comfort. My family’s dog would come to spend many days with me at GF Strong during my recovery.
My main motivation for continuing physio is because I have some nerve pain, which I don’t know if its directly or indirectly related to my bleed, so I’m trying to get rid of that. I also work on some posture balance exercises.
I can definitely empathize with nausea. I can’t even count the number of nausea medications I tried. I basically couldn’t keep any food down, I was vomiting after every meal.
Right now I am waiting for another MRI and then Angiogram, but everything is on hold for a while with the whole pandemic. But, I will share once I decide.
I wish you, Katie, and the rest of your family all the best.
I’m glad you liked it. It took me forever to put this together, but I’m glad I did. Her doctors and therapists loved seeing it, especially those who cared for her back in ICU days when no one expected she’d come this far. It was also a bit of a “in your face” to the particularly prickly Nurse Practitioner in charge of her at rehab. She openly told us she didn’t expect her to walk or talk again so we showed her!
People talk about this pandemic being a before/after situation and it for sure will be for society at large but for our family and others who go through similar traumatic events, this pandemic thing will (hopefully) not be nearly as impactful.
Oh and the video has been extremely helpful to show to her teachers. Seeing what she has gone through helps them to realize the severity of her situation and that she just cannot be expected to manage like others her age. Upward battle is that one and I am a teacher myself!
Stay well. Are you in the UK? We’re in Canada but you probably realised that already.
Good to hear that you’ve been able to finish up high school and I think you said you’ve started university?
Katie has come a long way from when she first went back to school, but it’s still a huge struggle. Sounds that other kids make (clicking pens, humming, eating ) drive her crazy and school is just hard. Attention and concentration etc are hard. She’s only in grade 7 now and more disruption to her schooling because of the pandemic. Her schooling since the rupture has been so disrupted. Hopefully she’ll do ok once she’s at high school. I worry.
Anyway, all the best with your ongoing recovery. Keep us posted. Katie’s next test is September—MRI just to check things. She’ll have an angio in a few years too. And we’re waiting on having a neuropsych assessment repeated.
That’s a really good point. A lot of people here have difficulty persuading people that they have real limitations because it is so hidden within and most of us look “normal”.
I like the in-your-face bit, too!
I agree that with everything you’ve already fought through, coronavirus might (hopefully) be a cinch.
Very best wishes,