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AVM Survivors Network

AVM: it bled in December and awaiting all tests / treatment

Hi I was diagnosed with a brain bleed back in December '15, eventually fully diagnosed with an AVM located near the cerebellum only recently after the blood “pocket” disappeared. Since the incident, I resumed a “normal” life (back to work etc…), although one with a time bomb in my brain!
I am awaiting some final tests results to determine the appropriate treatment. Assuming it’s a surgery, I’m writing to the community to understand what the recovery process entails? Especially in the context of being a father to twin baby boys… Will I be able to play with them after hospital discharge etc…?

I thank you all in advance for your feedback and to the people that created this forum I say thank you too.

Hi, T Chicago, let's nix the words "time bomb," okay? Surgeons use those words when they wish to be particularly dramatic, but we haven't found them to be particularly accurate or helpful to patients. I am a parent of twins, too. I am hoping someone in your family can step up to help with them while you are in recovery, as peace and quiet is helpful in recovery.

If you haven't joined the cerebellar group yet, please do -- just click on "Groups" to find it. Those members may be your best guide to the recovery process, though recovery is very individual. Where are you thinking about being treated?

T_Chicago...This is a sub-group that you may want to join:

www.avmsurvivors.org/group/avms-of-the-cerebellum

Like Dancermom said, it doesn't help us to be told that we have a time bomb...What helps us is to get great help and support here on the Network.

You may also want to get a second opinion before deciding what is the best treatment for you.

Stay Strong & Stay Positive.

Hi and thanks for your response. Followed and treated at Northwestern, that's where I was sent following the incident ER / neuro ICU etc... and all exams since then.

thanks for the word of advise regarding recovery, will keep it in mind if and when I need to plan a lengthy recovery, most likely figuring this out next Monday...

thanks Louisa, much appreciated.

I saw on the forum here discussion about 2nd opinion. May need to follow people's advise on this one!

Many of us are true believers in getting at least a second op! Not every neurosurgeon specializes in AVM's. Ask your current doctor how many AVM's he has treated in his career...That is important to know.

The first one I saw had very little knowledge about AVM's and told me to just forget about it....so I found the top AVM neurosurgeon in my area and was grateful that I didn't listen to the first doctor.

T, there are a fair number of posts here about Northwestern, and it may be helpful for you to connect with those members, too, to learn more about their experiences there: http://www.avmsurvivors.org/main/search/search?q=northwestern
It's always nice to hear from others who have been there before you. :)

I had a crainiotomy 3 weeks ago and I have 3 children. My youngest son was scared of my boo boo for a few days. He is 7. I have a 12 inch scar from the right side of my head down to about an inch past my left ear and I just had 50 staples removed. When the Doc says a six week recovery I believe it to be true now. You can get up and do a little bit after two weeks but expect pain, nausea and dizziness. The pain meds made me sensitive to noise. Everything hurt. Just take some time everyday to talk with your kids about their day at school, friends and such. Sit and watch a movie or help them to understand you can only play for a little bit but then you need to rest. I let my kids know what to expect before the surgery and I didn’t keep them in the dark. But I admit I slightly sugar coated my upcoming surgery. I stayed positive so my kids had nothing to worry about and then cried when they weren’t watchin . You are not alone…

Tania, thank you so much for your message and for sharing your experience with me. My little guys are only 15 month old but if a surgery is planned for me than I will definitely share with them as I do with every other step of my life. Completely understand the sugar coating, thinking about it as it is constantly on my mind I had similar ideas.

thank you again for your post and for your help and support.

Hi T, my brain bleed in the cerebellar area, happened in 2001 and my craniotomy to remove the avm happened about a year later. With the bleed, I dealt with ataxia, loss of coordination, nystagmus and diplopia. I was almost fully recovered; went through intensive physio and occupational therapies to get to that point. Some days were good, some...were not(dizziness=vomit). I was lucky because I was surrounded by a very good group of caregivers. They were firm but still kept their sense of humor.
After my craniotomy, I went through the same deficits but as much as the therapies helped me improve, it plateaued. I have left sided weakness, my coordination is a little off and I have a little bit of dizziness now and then. Nystagmus and diplopia not a problem.
I've learned to compensate and pace myself. Patience has been very important.
I worked in child care. Running and playing catch were not so easy. Running made me nauseous. When playing catch, if their aim was not so good, they ended up getting the ball for me. I didn't even ask them to get it, I just moved too slow for them.
Wish you well.

Hi T Chicago, I too am a father of twin boys, and for me it was surgery for my rupture and then surgery again for the AVM removal. Every surgery is different and even the doctors cannot be 100% sure of things. For me my surgery was supposed to be 3 or 4 hours long (the AVM Removal one) and it turned out to be 10 hours, So the surgeon said that it was more complex to isolate and remove than they thought from the scan pictures. The one thing I would say is always have hope and stay positive ! , It can be hard to do this sometimes, Was especially hard for me in the evenings trying to go to sleep with so many thought in my mind, But everything turned out great, I was in hospital for one week and was back at work full time after around 8 weeks (which is quick) one word of advice I have to give is to rest, Get as much sleep as you can after your treatment, Even during the day or whenever, just get loads of rest :) . Take care and I hope all goes well let us know how things go.

thank you Tina for sharing with me. Based on my latest doc visit, I'm heading toward surgery but the doc team is confident that I can hope for full recovery with short(ish) disability period of less than a month. At this point and after reading from all you guys, I am taking the timing with a grain of salt but was just so relieved to hear my doc tells me that my case was treatable... thanks again for your note.

HI Martin, thank you so much for sharing your story. I definitely share the "tough to go to sleep" sometimes... but since hearing from my doc that my AVM was treatable, I'm in better spirit and the spectrum of a surgery doesn't haunt me so much. Anyway, I am very grateful to hear from all of you and I thank you again directly Martin for your contribution.

oh by the way, thank you for the tip on recovery and resting. I wasn't always the best doing rehab for various injuries but this is different and I thank you for highlighting the importance of it here.

Hi T. I'm a little late to the party but I'll add my two cents. My bleed was 7 years ago. After my bleed I was kept in a partially medically induced coma for 3 weeks before my crani. I spent a total of 3 months in the hospital. Everyone's story is different yet there are some common threads. Fatigue is probably one of the most common "side effects" of bleeds and surgery. Even after all this time I still am wiped out by the end of the day. I would say having twins toddlers would be exhausting all by itself, no?! I would imagine you'll be able to play with your boys but you will be very tired. You'll need to rest as often as you can. The noise may bother you as well. For me, loud noises and lots of chaos are still hard. You'll find that after a few hours of lots of activity or noise or both you'll be exhausted. It takes a while to recover also. BUT...it's all worth it! I've got two girls. They were quite a bit older than yours when I had my bleed (8 and 5) so they weren't as all over the place as toddlers but they still wanted a lot of attention from me and even though I still can't do everything I would like with and for them, they appreciate and enjoy all that I can. Your kids make it all worth fighting trying your best for every day of your recovery. It will be challenge but us AVMers are tough cookies! Best wishes to you and please keep us updated!

I just had my AVM removed via crainotomy 4 weeks ago. I have a 12 scar on my head like a head band. I still have two more weeks of recovery time but I feel pretty good. The first two weeks are the very hardest. But gradually the swelling and pain subside and it was so worth it to me because now I am cured. I won’t ever have to worry about this ever again. Its really scary but this group has helped me so much. You are not alone and you will be OK.