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AVM Survivors Network

Cerebellum AVM bleed into the Brainstem

#1

Hi Everyone,

I’ve been visiting this site for information and support ever since my younger sister’s AVM bleed 5 weeks ago. Im from Sydney, Australia. My sister is 28 years old and her bleed was “huge”. She had brain surgery within a couple of hours of the bleed and the entire avm was removed successfully. They didnt need to cut into any brain tissue which is a bonus i guess? She was kept in an induced coma for about 1 week. She has now been in her own coma for 4 weeks. She only started opening her eyes 5 days ago. The part that is concerning me is that she was starting to show some very weak response to command a week or so after being taken off sedation but a week later stopped. In saying that the neuros cant find any evidence of further injury or complications to have caused this. She has progressed in ways though. She is breathing 100% on her own and her eyes are opening and moving around. Her MRI had shown swollen ventricles and swelling in the back of her head around the cerrebellum and brain stem. Her ventricles are now a normal size but the brain swelling is still there.

I guess my questions to you all is, has anyone experienced “going backwards” in that way and how long does it take for swelling of the brain to go down?

Any help will be appreciated.
Thank you.

#2

I’m glad to hear that your sister is making progress. The progress may be slow, but none-the-less, its progress. Healing takes quite a long time for most of us. had my AVM bleed in 2014. It’s in my Cerebellum but did not require surgery because it sealed itself and I thank God everyday for that miracle. I had Gamma Knife Radiation, but could not have that until my brain healed and the swelling subsided. That took me about 4 months. At month 5, I was ready for Gamma Knife. During those 5 months, my progress went back and forth. In time, the fog cleared, and things started to make sense again. From that point on, I had to take it one day at a time and no 2 days were alike. In some ways, I am still healing and making adjustments as needed. Encourage your Sister to be patient. Good things can come in time. Wishing you and your sister all the best.

Sharon D…

#3

Thank you so much for your response @Sharon_A_Dawkins. Thats very helpful and encouraging. I’m so happy to hear about your recovery. I will keep you posted about my sister and, if its okay with you, may contact you again further down the track for more advice? Thanks again.

#4

Sarah feel free to contact me or anyone in the group at any time. We’re here for you and your Sister. Being part of this group has helped me so much in my healing. Each one can reach one!

#5

Sarah, no experience to help you out but have read where the patient is aware of what is being said, and going on but unable to respond. I can’t recall where it was but the patient ultimately recovered and the story was about knowing the love, support and kindness around here, but not able to acknowledge. It hi-lighted the importance of the positive in recovery. Take Care, thinking of you and your sister, John.

#6

@JD12 thats really good to know! Thank you for sharing. It does appear like she is aware of our presence sometimes. The doctors also think she may be. We’re all talking to her everyday and trying to reassure her that she’s doing well and will get through this. Thanks again.

#7

Hi Sarah: My 8 year old daughter had a a bleed from a Cerebellar AVM on September 14. The worst is likely behind you with respect to your sisters condition. There is a sizable portion of the population that would likely not have survived the bleed that your sister went through. Consider yourself lucky that she is alive and that the doctors removed the bleeeding and AVM right away because the bleeding from her cerebellum could have caused an obstruction of her CSF pathway leading to a condition called hydrocephalus. The swelling will likely take several weeks to months to fully heal. Your sister will likely need to go through acute rehabilitation to gain back balance and coordination required to walk. My daughter spent 30 days in an inpatient rehab facility. The prognosis for people with Cerbellar AVM hemorrhage’s are good and most people fully recover and are able to walk again. It’s a long road. Keep in mind that you’re going to have good days and bad days. It’s important to measure her progress not find the days but by the week. My daughter threw up one three times a day every day that she was in rehab. Good luck and keep us posted.

#8

@ucla thank you so much for taking the time out to share. Thats really helpful and again, very encouraging. All the best to you and your daughter.

I will keep you posted and would love to keep hearing about your daughters progress.

Thank you.

#9

Hello and welcome. Sorry for the late response. After my AVM surgery I also had brain swelling and was in a coma for 2 weeks. The swelling went down very slowly was paralyzed on my right side for a month. I’ve had every type of therapy to restart the body’s recovery. Best way to say how it felt was that my brain was like a computer that had all the files deleted. It will be a long recovery but just give it time. Best of luck to you and your sister.

#10

Hi Sarah. How’s your sister now? My daughter had a very bad AVM bleed in the same area just over a year ago. I could tell you about her recovery if you’d like. It was such a hard year for our whole family. I have a 13 yr old son too. My daughter is 10, soon to be 11. She "celebrated " her 10th birthday while in a coma and failing to successfully come off the breathing tube. Anyway, it’s behind us now. Hope your sister is doing much better now.

#11

Hi @AllieG

Thank you so much for your response. Yes i would love to hear about your experience please. Did your daughter have any infarcts or damage to the brain?

Thanks so much

#12

My sister is now starting to respond to commands more consistently with her feet and slowly with her eyes. She is a bit stronger in her arms and slowly squeezes our hands on command but cant lift her arms. She is able to slowly bring them down when we lift them for her. There is some damage to the midbrain and a little to the pons. Her surgeon is still hopeful though that she will make more progress.

#13

Hi Sarah,

As strange as this may seem, I’m still not 100% sure exactly what the
extent of her brain damage is. Right after the bleed, she had compression
of her brain stem due to the swelling in the area of the 4th ventricle.
Once the swelling came down, they did another MRI which fortunately didn’t
show any ischemia or areas of secondary brain damage. An MRI done about 2
months after the rupture showed an overall atrophying, like a slight
jshrinking, of her cerebral cortex. This really freaked me out. Her
neurologist described it as if her brain were a balloon and someone just
sucked out a bit of air. He said sometimes people with anorexia develop
this due to malnutrition and asked if there had been any issues with
feeding while she was in the PICU!! I was pretty upset about this. She did
suffer terrible neurostorming following her bleed with high temperatures,
heart rate and blood pressure, all of which increase metabolism a lot.
Anyway, fortunately after yet another MRI another 2 months later, this
atrophying seemed to be resolved or back to normal.

So the extent of her brain damage seems to be directly inflicted by the
rupture. Her neurosurgeon explained that due to the force of the rupture
and the lack of space in that area of the brain for the blood to go, that
part of her cerebellum was simply destroyed and washed away with the blood.
I’m not sure which structures of the cerebellum but she has ongoing
problems with balance and gait. Previously she also had problems with depth
perception, double vision, nausea, and nystagmus but fortunately with time,
those issues are almost completely resolved.

What about your sister? Is she speaking and eating on her own? It took
Katie over four months to say any words. And about the same amount of time
to start eating by mouth. Her eating and drinking are fine now. Still
problems with speech. Her speech is quite slow but improving steadily.

#14

Thanks @AllieG,

This all sounds very much like my sisters situation except for the atrophy. She has some damage to the cerrebellum but the surgeon didnt seem too concerned about it. His main concern is the mid brain. She did develop hydrocephalus and had a shunt put in. She had high temperatures during her time in icu but it did fluctuate up and down. Her heart rate had generally been on the higher side of okay but is now very normal. Her blood pressure was fine the entire time and actually needed to be raised quite high with norad to achieve better prefusion to the brain. She is now just over 3 months post bleed but doesnt seem anywhere near talking or eating. Just today the doctors and nurses have agreed she is consistent enough at obeying commands to start physio. This is after months of trying to convince them! But i am so relieved they are finally moving forward with treatment of some sort. Up until now my older sister, mum and I have been doing her therapy everyday. She has definitely shown signs of progress.

#15

It’s so incredibly hard isn’t it? How old is your sister? My daughter will
be 11 next week. Her surgeon told us an adult would likely not have
survived her rupture but in terms of recovery I don’t think age plays a
huge role unless someone is quite old. I’m so glad she will start physio
now. Is she still in the acute care hospital? Will she be going to a
dedicated rehab facility? At 2.5 months my daughter was transferred to
rehab but honestly she was too sick to get much out of it for the first 2-3
weeks. She vomited all the time. We were there for 5 months! By the end she
was like a different person!

I’m sure you’ll see some marked improvement soon. Katie’s came on fast at
the four month mark. She started to spell out her thoughts and wishes on a
laminated printed keyboard and then said her first words, “no, mum!” a few
weeks later.

Keep me posted and big hugs to you and your family!
Allison

#16

Wow. Im so pleased about your daughter! You’re right, it is so hard. My sister is 28. She was not expected to survive. The way she looked on the night of the bleed, most thought she was already gone. She has definitely come such a long way. We never, from the first moment though, gave her the impression we were there to say goodbye, no matter what the doctors told us. I guess physio and rehab wouldnt have helped much up until now since, like your daughter, she has been very sick. Mainly with chest infections and UTIs. It really knocks her about when shes in that state.

Thanks so much for all your input. It teally has helped! You’re an amazing mother. All the best for your daughter. Please keep me posted too about her progress and ill do the same.

#17

Hi Sarah and other followers of this thread, I am sorry about your family members. I just wanted to share our experience. My brother had the rupture on Dec 6 also in cerebellum. This is week 7 at ICU, he survived an infection in the cerebral liquid and he is not yet breeding by himself. Fever is gone, finally! He is with nystagmus now and getting the shunt tomorrow. Still responsive but not physio therapy at all. I wonder how long it took your sister to get off the respirator? I am asking because we may have to move him to other hospital in our country due to insurance reaching its limit, and it would be good to have more experiences of twhat to expect in terms of timing/improvement to know what care we should look for the next months. Thanks and please send our best wishes for your sister. Hope she is even better now from your last post.

#18

Hi @Coquito,

I am so very sorry to hear about what you, your brother and family are going through. It is really the hardest thing to ever endure. My sister was taken off the ventilator 1 month aftet her bleed. She still has a trachea, a feeding peg and catheter. One thing i know from hearing all different stories on this site, is that everyones recovery is different. Its been almost 4 months since my sisters bleed and she still cant reslly do anything although she had made very small progresses. The doctors told us from the beginning that because of the area of the bleed that recovery will take a very long time.

Do you know what grade your brothers bleed was and which areas he may have damaged?

Will keep your brother in my prayers.
Sarah.

#19

Hi Coquito,

I see you’re in Toronto. I’m in Burlington just down the QEW. How old is your brother? Which hospital is he at? Why would your insurance run out if you’re in Canada? That part confused me. With my daughter, they tried to remove the breathing tube about 8 days after the bleed but she couldn’t cough well enough to clear her airway. She ended up needing a tracheostomy and Gtube like Sarah’s sister. Fortunately the trach was successfully removed after 3 months and feeding tube after 8 months. I would also like to reiterate what others have said. Each injury and recovery process is unique. Also, it’s not unusual for a patient to appear to be making very little progress for a long time and then suddenly make great gains rapidly. That’s what happened in our daughter’s case. Slowly emerged from her coma for 4 months and then bam! She started talking and eating again. Slowly at first but she came back to us. It’s just over a year now. So slow but she’s improved so much. Pls keep us informed about your brother.

#20

Hi Sarah, sorry for the late reply, hard days here at the hospital, now facing seizures. Thanks for sharing your sister’s experience. My brohter’s avm is grade 4 we have not heard of the possible damage yet. Now drs are worried about the seizures and put him in an induced coma for 48 hrs. Did your sister go through something like this? The possibilities of moving him are for now on stand by.