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AVM Survivors Network

Cerebellum AVM bleed into the Brainstem

#21

Hi Allie, I’m based in Toronto but my brother lives in Honduras. He got the stroke there and we flew him in an emergency to Houston, now the insurance is running out. I am sorry to hear about your daughter, I’ll be back in Toronto and perhaps we can try to meet and share experiences. For us this is week 8 and we are fighting the aftermath of a long brain infection and seizures. Did you have any issue with seizures at the time of waking up?

Thanks again

#22

¡Hola Coquito!

Me gustaría usar este momento para practicar mi español un poco. Discúlpeme
si hago muchos errores. Me gustan mucho los idiomas pero no tengo muchas
oportunidades para hablar (o escribir) con un hispanohalante.
Me da pena la situación con su hermano. Espero que le vaya mucho mejor en
las próximas semanas. Al punto de ocho semanas le parece sin duda como
mucho tiempo ha pasado, pero los daños cerebrales necesitan meses aún años
para recuperarse. Afortunadamente mi hermana no tenía ningunas
convulsiones.

Ok I’m switching to English now. Can’t think anymore. Is your brother fully
awake now? Can he speak? Move his arms/legs? This all took a very long time
to come back for my daughter. So scary. Did he suffer from what the
doctors called neurostorming or autonomic storming? My daughter did. It was
weeks of high temperatures, super fast heart and breathing rate, rigid
muscle spasms, profuse sweating. It was awful. The teeth grinding was so
intense I thought she’d wear down or chip her teeth. I hope your brother
can stay in the hospital that is best for his care. To have to worry about
insurance must be awful. We are to this day still so thankful for our
Canadian health system and how that aspect was not a worry for us.

Please let me know if you have more questions. I doubt I’d be able to meet
up with you because I’m caring for my daughter every day but I’m happy to
communicate online. Take care and your brother is in my thoughts.
Allie

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#23

Hi @Coquito,

Yes, my sister did have seizures and is now on a daily dose of keppra (anti seizure meds).

#24

Coquito, any updates on your brother?

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#25

Hi Sarah, omg such a long and hard journey. In February they induced him (again) in a coma to stop the seizures and he sort of stayed on it so drs said they saw little chance of recovery. They suggested the worst options and it was tremendously hard. One of his drs fought for him and told us to wait 1 month to see the real outcome of the seizures. He woke up again but very weak, we transferred him to Mexico (our home country) and he’s now recovering some movement and out of the respirator. He also got his shunt unadjusted after an MRI in mid march! So this is something to watch in your sisters case (i think) and that send him ‘back’ like a month, he is aware some hours of the day and he understands what we say, when i Skype with him he replies with his eyes but still can’t speak and has the feeding tube. Drs say likely in a month he can go home. Is you sister in a house already? How is her progress?

split this topic #26

A post was split to a new topic: Private Message

#27

Update on your sister?

#28

Hi All,

Sorry I haven’t been in touch for a while. My sister is still in an acute ward in hospital. Yes 1 year and almost 4 months now. She has her trachea out and miraculously started talking!!! We were told she never would. There have been a few complications with shunt adjustments and changes along the way hence still being in hospital. It’s been a long journey but she is now able, with great effort, to lift herself to standing position and on her good days even take a few supported steps! She’s always extremely fatigued and her memory plays up alot. She’s still unable to controll her swallow which is probably the hardest part for her to deal with at the moment. All in all though she has definitely come a long way. We’ve never given up and still going!

Sarah

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#29

Sarah,

It is great to hear good news from you! It sounds like she is making slow but good progress and it’s really good to hear. Did I share with you the story of Richard Gray, an ex-UN peacekeeper who had a stroke, documented by his journalist wife? He had a big stroke but the film shows his progress over 4 years back to a good outcome.

This is really good news and I hope she keeps up the good work. Happy new year!

Richard

#30

Wow, what an incredibly difficult journey! I’m so glad to hear that your sister has made progress. I hope this continues. My daughter just passed the two year mark. She has done well. Speaks well just a bit slow and she’s walking pretty I dependently. She is still making progress! Prayers that they both continue to get stronger. And for Katie also the fatigue is very hard.

#31

Hi all,

I forgot to mention in my last update that in May (I think it was) my sister suffered a SECOND bleed! This was in her frontal lobe due to shunt overdrainage and blood thinners. She literally went back to square 1. She was unconcious again, emergency brain surgery, coma all over again! We couldnt believe it was happening. Still she came out fighting. After another long and agonising waiting game she very slowly came back to us. It set her back in some ways but shes still making progress every day. Im so happy to announce thay 1.5 weeks ago she started to swallow!! The Dr’s had told us there was really no hope of it happening, yet once again, they were wrong!

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#32

Sarah,

She is really going through the mill! It’s great to know she’s still making good progress, though. As others who have been through similar things would say…

NEVER GIVE UP!

Very best wishes to you all,

Richard

#33

Dear Sarah,

The fight of your sister and your family is inspiring. I am really happy she continues to make progress, in spite of all the new obstacles she’ve had to tackle in between! I am absolutely sure she will continue to do so, please keep the hopes up!

I would like to share with you that we have a surprisingly similar story. My wife had a bleeding in her cerebellum in October 2018. She has had to go through very similar steps as your sister. As her, my wife also had an enlarged 4th ventricle post-craniotomy and craniectomy. The doctors have tried solving it by putting a VP Shunt directly into that ventricle. That turned to be very VERY wrong: she not only got worse clinically, as that has also caused a new hydrocephalus on her right upper ventricle which she didn’t have before!. They have put a 2nd shunt inside that ventricle, which also turned out not to help and only made things worse. She has then taken off both shunts, and only put a prosthetic bone flap back where she has had the first craniectomy in the first place: and it all seemed stable and fine. She went back to rehab, started to make tremendous and almost miraculous progress (by the end of the 3rd week, she was starting to eat, speaking got a lot better, and she even started to take the first steps walking). But then again, new hydrocephalus complications have arisen… and this time it also caused a bleeding in her frontal lobe (as your sister), and mostly troublesome: a damage to the midbrain due to the inter-cranial pressure caused by the hydrocephalus… She has had other 3 surgeries (2 pellucidotomies, and a new VP shunt) to contain the hydrocephalus, and for the moment it seems fine. But she is back 10.000 miles now it seems. Back in a coma, slowly waking up, but worse, it seems she will have gigantic new problems moving her body parts (if she can move her limbs at all)… The swallowing that was already good enough for her to eat, is now totally gone. Speaking - which was already very good - is gone too. We are still, though, happy she is starting at least to open her eyes a bit, able to listen to us, able to sometimes answer us with a half-blink, after a 3 weeks waiting. She is a tough fighter!! So is your sister, for what I can tell!

I wanted to share this with you, for our stories seem so similar, though the timings are different. I have read somewhere else that AVMs and bleeding per say in the Cerebellum are one of the least studied ones, for they are one of the most rare. There is also a lack of studies on the rehabilitation potentials and prognostic factors for young woman adults (my wife is now 32, your sister 29?). It does seem though that there are many similarities to people who have underwent it, in regards to the possible complications, even in the long run. At least to us, the doctors have never ever told us of such things. The extent of the damage caused by the hydrocephalus (bleeding in the frontal lobe, herniation on the midbrain) is fairly more complicated to rehabilitate than her initial damage caused by the AVM and the first bleeding… We’ve always thought, hoped, and also heard from the doctors, that her toughest days were far behind - but now we have a new beginning from ground 0 again. Hearing your story, and how your sister continues to rehabilitate, gives us hope!!

I wish your sister and your family all the endurance, resilience, and a wonderful recovery! Please do keep us posted. I will keep you and your sister also in our circle of good thoughts and prayers!

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#34

Hi @lgz

What a difficult journey you are going through. It is so similar to my sister. The best advice I can give you at this point is not to give up. Support your wife. She can hear you and needs all the encouragement. Be patient. Progress is agonisingly slow, it seems particularly when the mid brain is involved.

Thank you for sharing and please keep me posted.

Sarah

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