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AVM Survivors Network

Rehabilitation guidance? - Wife / 31y old / cerebellar AVM and rupture + craniotomy


#1

Dear all,

On 20.10.2018 (roughly 24 days ago) my wife had a brain hemorrhage due to an AVM deep within her cerebellum that we did not know about. At 16:30 we were going out for a late lunch, at 17:00 we took the ambulance, 17:15 arrived at the hospital, and at 20:30 of the same day she was entering into an urgent craniotomy to both contain the bleeding that kept spreading, as to take off the AVM. We acted as fast as we could and luckily we took an ambulance to the ER of one of the best hospitals in Germany, the Charité in Berlin.

What followed was a week of serious life threatening situations, for her ICP kept going higher and higher and they needed to do a second surgery to “alleviate” the pressure by making a hole in her skull. 7 Days after the surgery she completely changed her behavior, and it starting getting better and better - spite of an MRSA infection she got, which is by now fully contained and cured.

Two weeks later she was taken off her sedatives (yes, she was in an induced comma state for 2 full weeks), but she did not wake up, presenting thus signs of regular comma. We were desperate but kept the hopes up. After three weeks, she started opening her eyes, and was mostly on a vegetative state, sometimes responding to music by smiling. And now, 2 days ago, she started to respond us by blinking when asked and moving a bit her body parts : ). Even though she still breaths assisted by a ventilator through her tracheostomy, she is already able to breath by herself - but causes her a bit of stress still.

The doctors want to send her to a REHAB clinic where she will take different therapies to regain her functions as soon as possible, probably tomorrow (14.11.2018). She cannot talk still, though she moves her lips a bit. She cannot swallow as well. Most of the time she cannot move her body parts when asked. Even though we know she is fully conscious and we can speak to her, and she answers us consistency when blinking, she cannot do sometimes tasks that require a bit of concentration (like blinking whenever she hears the word “A”). She also seems to have difficulties looking to the right side of her head, but not to the left side. But she really, really smiles a lot when we interact with her - responds well to music or anecdotes. She has so far had a very warm heart and good mood, as far as we can tell.

The doctors are hopeful because she is young, and have been showing good (almost miraculous) progress by waking up from her comma and vegetative state so soon. Her brain injury by the bleeding and the surgery was devastating, she has lost a big part of her Cerebellum, but “luckily” the bleeding and ICP damage was only contained in the Cerebellum, not apparently affecting the brainstem neither any other brain part. The doctors said that through months of therapy she can recover most of what she has lost.

My question is mainly to those who have already recovered from an AVM like hers, or whose loved ones have. What are the best practices that have helped you during the rehabilitation? Does the constant presence of the family actually helps or makes it more difficult for you to concentrate? Could you please cite to me the types of activities and therapies that have worked for you the most? (of course this depends highly on each case and person, but nevertheless I would really love to know).

Last but not least, we live in Germany but she does not speak well german (was in fact, studying it at the moment), only english. Our native language is Portuguese, we are ex-pats from Brazil, but she seems to be understanding both English and Portuguese well. The rehab centers have doctors who speak english, so I believe it will be fine - but would you say that it is invariantly better for her to be on a native speaking rehabilitation clinic for her recovery? Transporting her to Brazil to make such extensive rehab might be not viable, even more for we think she will have a better treatment here in Germany.

All the best and all the love to all of you!

Luiz.


#2

@lgz I am so very sorry that your wife has gone through all this. I too was in a coma for five days. I had a rare stroke first then my AVM formed.
I never had a bleed but my stroke was from 5 blood clots and I had a lot of pressure in my head ( 3 months ) before the stroke and caused a lot of brain damage and made at least brain wise a full recovery. I still have pain.

Your wife is in there. Can you give your wife anything to write with or an ipad to type her answers? its a different part of the brain then speaking.

I can only speak for myself I wanted my husband with me. My mom wanted me to move in with her to take care of me but even though I could not speak I was happy my husband said no he would care for me. I needed alot of sleep at first.

My husband gave me coconut oil 1 tsp in my coffee or tea a day then 2 tsp then 3 and this is what I believe helped heal my brain faster than the Stanford doctors .
I know I had short term memory loss so I was glad my husband each day kept telling me what happened to me.

If you want to chat on the phone private message me

Hugs
Angela


#3

Igz:

My experience was much like Angela’s. My Cerebellum AVM ruptured 4-years ago. I was also in a coma for a bit. I did not need surgery. My bleed sealed itself and it took some time for the swelling to go down and for the brain to heal. According to my husband who was by my side every waking hour, I responded to various commands like “squeeze my hand or wiggle your toes”, but I don’t remember any of that. After a month of Rehab I went home and slept a lot. Had some short-term memory loss; couldn’t remember some words; had headaches and had little appetite. In time, I slowly regained most everything back. My balance is still a little off and the vertigo never completely goes away. In P.T., I learned how to do things slowly and safely. The main thing that helped to heal me was P&P (Prayer & Patience). Your wife is in for a long healing journey. Be there for her. Be kind to her. Don’t let other family members stress you or her out and don’t you take it personally when she snaps at you. She won’t mean it … she’s just super-frustrated that she’s different than she was the day before the rupture. In time, she will very likely regain a lot of what she has lost. Most of all, continue to love her and make her feel safe. I wish your wife all the best.

Sharon D.


#4

I survived a ruptured cerebellar AVM 25 years ago. After a Burr hole and an urgent craniotomy, I was in for a long recovery and rehab. I, too, had
MRSA. Dizziness, poor appetite, vomiting, a wide gait, sensory overload… I needed family to quietly explain what had happened to me, who had visited, etc… and, just sit by… not too much at one time. It was difficult for my brain to process too much input at one time. And, once all the therapies begin, it will be frustrating for her (and you) how slowly progress is made. Just keep at it. Focus on the tiny achievements. Keep in mind that all this is WORK and she will feel a overwhelming need for rest and sleep. The brain is repairing itself at those times, too. PATIENCE. CARING. :pray:


#5

Hi Luiz,

My daughter who was 9 at the time had an almost identical AVM rupture on 5.1.17. Her bleed did compress her brain stem temporarily but did not cause permanent damage. Like your wife my daughter’s cerebellum (right side just right of centre) was severely damaged. Her surgeon described her bleed as catastrophic and an attending neurologist told us her scan was one of the worst cerebellar bleeds he’d ever seen. So helpful! I don’t have a lot of time right now as I need to head to work but I’d be happy to answer questions you have.

So far your wife seems to be progressing better and faster than my daughter did. My daughter did not start responding to questions until about 6 weeks post bleed. She did blink before that when asked but inconsistently. She started responding to questions by gazing at either à yes or no card that we held up. She didn’t smile until about 3 months or more. That was very hard. She did not start intense rehab until 3 months post rupture. She experienced a lot of vomiting due to dizziness and her trach. She also had frequent urinary tract infections that made her very ill.

Your wife’s unwillingness to turn her head in one direction could be related to vision and dizziness. We found out about 5 months post rupture when she began to really communicate that our daughter had very bad double vision that prevented her from moving her head and made her frightened when close to windows or when lying on her back on the therapy table. She finally started talking and eating by mouth at 6 months. Trach removed at 3 month mark. Huge milestone as it was VERY bothersome for her.

Ok fast forward to good news. As you can see her road to recovery was very long and very difficult. I was with her every step of the way but different situation, she’s a child. She stayed in rehab until August 2017 and continued to have out patient physio until August 2018. She had speech therapy through school until last month and may qualify for more.

Snapshot of today. She is talking very well and is walking independently. Her walking took the longest. Only truly independent since this July.

Every task is good therapy. Trust the therapists. Your wife will need excellent PT, OT and Speech. Eventually swimming became one of the best therapies to reestablish balance and strength.

Must go now. Love to you and your wife desde Canada!

(I’m fluent in English, French, German and Spanish but not much Portuguese :disappointed_relieved:)


#6

Stay strong Luiz, you can see that it will be a slow process which is a common theme in so many things related to the brain. Please keep us updated and know we are with you. Take Care, John.


#8

Dear Sharon,

Thank you so much for your message and help! It really helps me to hear about how you’ve felt and what needed. I am really glad to hear you have had a good recovery!

She has progressed quite a lot during this past week. She can now answer commands of raising her hands, moving her feet, and etc. Her arms are reaching further and further. I know it is a slow process, but I am really really happy with every new thing she seems to be able to do on a day to day basis!

I constantly remind myself of being kind and patient as much as I can, as you have said. My relationship with her is really great and we smile a lot and always help each other, now more than ever.

But as you have briefly mentioned, there are other stressful situations (family, friends) that get into the way - and in those, I am indeed struggling still. I do understand that this is a moment of pain for everyone, and I also understand everyone is just trying to help, but I do feel a lot of people don’t understand that first, I need to focus 100% on her and what she needs and her recovery, and second, that in spite of this need I am also in a lot of pain for my best friend / partner / wife.

Her parents are living with me since her rupture, and they are older and depend on me for everything - we’re now in Germany, and they don’t speak anything else other than Portuguese, thus I have to help them for everything (and constantly translate what the doctors and nurses say to them). When we visit her, her mother constantly caress her and talks nonstop like she would to a child, sometimes guessing what she needs without asking or not enabling her to answer or exercise properly. I’ve talked to her about it, only asking her to try listening a bit to what she might be trying to communicate and letting her concentrate a bit on her recovery without moving or caressing all her body parts while she tries to move them, but she is reluctant to listen to me. I wish she could be more understanding, and I am trying to be as much understanding to her as I can. It may be that I am the problem in this situation, getting in the middle her mother-and-daughter love. I don’t know. I honestly do not know what I should do, but I am keeping all these worries away from her for now.

If you don’t mind me asking, when you were dismissed from the Rehab and sent home, how was your state? Were you able to eat, talk, and walk?

Again, thank you!

All the best,

Luiz.


#9

Dear,

Thank you so much for your message! I am really happy to hear of your recovery!!

I am indeed trying everyday to keep the patience, be caring, and always cheerful of her progress, regardless of how big of a step it is!

I explain to her everything the doctors and nurses say, as well as what she has been through, and try to paint a nice picture of our future and how we’ll always be together and I’ll be there for her step by step.

I am also keeping in mind the sensory overload factor. Trying not to speak in parallel next to her, nor having many people talking to her at the same time, trying to make a good environment for her to either rest or concentrate, but feeling the moments when she’d rather talk and feel our love. Sometimes is tough that - and I do feel she answers and feels better when she talks 1 to 1 - but her family does not feel the same (as I’ve explained above and I don’t know how to deal with it still).

Her MRSA seems to be gone by now, and she is recovering fast. Would you mind telling me how long did it take you to swallow and talk? She already breaths without the respirator, but she has real trouble swallowing.

Once again, thank you. :pray:

All the best,

Luiz.


#10

Luiz

Are you able sometimes to visit your wife without your in-laws following you? It may be important, for all the problems you set out above, to be able to visit her sometimes without them.

They are somewhat in mourning, I think. It is difficult for them as much as it is for you. I can understand both sides.

The other thing I think is that you need to be careful to look after yourself. You need to make sure you are eating and drinking and resting well, as this is going to be a long journey. It sounds to me as though your wife will get better but it can take a very very long time. So, you need to not cut corners for yourself. You need to make sure that life is sustainable for you.

In the same way that they tell you in an aeroplane in an emergency to fit your own breathing mask before attending to others, thus you need to ensure you do not forget yourself in this emergency. If you fail, it will be a disaster.

You’re doing brilliantly.

Very best wishes

Richard


#11

Dear @lgz Luiz
Maybe you can help from the speech therapist or the dr to have them say it’s best to have less people and only have one person .
Do the parents have to stay?
I know my parents were coming to my house every day for a month and finally my husband told them not to come and he would give them updates.
This was better.
I didn’t want to be around a lot of people I just wanted my husband personally.

Can she use a straw to drink ?

If the parents need to stay then do shifts so you get a break.

When I got to go home I like to watch old tome movies. Not the news or anything flashy it literally hurt my brain.

I had lots of ice gel packs for my head and heated neck wrap.

I am so glad she is responding.try 1tsp of coconut oil in her tea or coffee when she can swallow. To help her brain heal
:two_hearts: hugs. Angela


#12

Dear Igz,

Thank you for the kind words. You are one of the very few people in the world to understand .

I am impressed with your deep caring and desire to understand your wife’s (and your) journey. But, as Richard wisely said, do not lose sight of your own needs. Do not feel guilty in socializing with friends or spending a few hours at a concert, or such. Those things nourish you and will be delightful for your wife to hear.

Regarding the desire of your in-laws to possibly “overwhelm” your wife, that’s a tough one. She is their daughter. Dads especially want to make it all better. All I can say is that my parents would come to the hospital everyday, for about four hours and my dad felt the need to talk, expecting me to answer. Finally, I said, “Dad, it tires me to answer you. It is difficult enough just listening.” He kind of “poo pooed” that, I could not get through to him. Many just don’t get it. (Unless perhaps a physician explains it!).

My parents took me home with them (I was single.). I felt an overwhelming need to rest/sleep. I did not sleep well at night, and would think about what had happened to me and what my future would be. I would get up, eat breakfast and take a walk with my dad, clutching his arm. But, once back, I NEEDED to rest/sleep. He could not seem to understand this either. I think he was scared for me…and for himself and my mom. Who knows?

While I am at it: Once your wife is able to stand and walk with assistance, walk on FLAT surfaces only. No grass, sand, bricks or cobblestones!! :blush:.

I did not have an issue with swallowing or talking, so I will not comment on that. The occupational therapists will be sure to check that out! No one wants your wife to come so far to risk having her aspirate on food or drink.

I hope I answered some of your questions. It’s from my perspective, of course.

Much love,

Lifeisgood :heart:


#13

So sorry your wife and you have been through a frightening journey, I had a AVM removed but just through a precautionary measure via craniotomy in May 2017, so didn’t have a bleed, i was lucky and caught it early, so sorry but I can’t give any rehab advice, but would just like to say hope your wife recovers well in her journey and best wishes to your family x


#14

Luiz:

I was dismissed after 3-1/2 weeks in Rehab. When I got home the real work began. I felt like I was in a fog (the meds). I started off walking with a Walker and having additional P.T. at home; my appetite was quite bad and I had to be reminded to eat and drink. Everything I put in my mouth tasted “curry-like”, and I hate curry. Meat, eggs, veggies, rice, oatmeal, toast and even water tasted funny. Ice Cream and Grapes tasted normal. I could talk, but I had serious short-term memory loss. Certain words I could not remember which made me cry because it hard for me to converse like I used to. I really struggled with communication which caused me to be depressed. My long term memory was stronger than ever! It’s true that when God closes one door, he opens another! I slept a lot which was a good thing. In time, the fog lifted, my walking improved, but I still had and still have vertigo; words slowly came back and life started to make sense again. Before the AVM, I was an excellent speller. Now my spelling is awful. Thank God for spell-check. I have learned to be a lot more patient and kinder to other people. I have learned and earned a much greater appreciation of people with any sort of disability because I have one myself. My gait may be a little off when I’m walking and my vertigo may slow me down sometimes, but I am a much better person than I was before my AVM Monster put me in my place. It has forced me to slow down and smell the roses; to pick my battles; to love harder; to give more hugs & kisses and most of all, to thank God every morning for waking me up so that I can see a brand new day! These are the important things I have learned over the past 4 years. I still have an occasional cry at times, but I’m entitled to it, dang-it! Your wife will get better in time, and you will get better as well. Right now you are so over-whelmed with the newness of all this, its making your head is spin. When you have questions or need to vent or need support, your fellow AVM-ers are right here for you. We’re a good group. WE GET IT, (when others don’)t. God Bless you both.

Sharon D.


#15

My husband had a rupture, severe bleeding and was in long term coma. He was given 10% chance to wake up and if so no promise of any function. He’s been five years. He is awake and moving more and more each day little by little. He can talk. This month he for the first time has received a lunch tray and is eating. Finally plan to be home for the holidays for good.

For my husband he’s always responded better to therapy with me by his side than in my absence. You and the therapists will have to determine that as time goes on.

Just know prayer and patience as another member recommended. Works. Never give up and keep reaching for one more step. Little by little one step at a time is our motto. For you and her. And don’t pressure yourself too much either…take it one day at a time. If today’s doesn’t go well then Tomorrow will be another new day and start.


#16

Dear Angela,

Thank you so much for your help! And I’m happy to hear upon your recovery : ).

Indeed the iPad sounds like a good idea!! I can’t believe I haven’t thought about it before. I will wait a bit when she can better control her hands and fingers and get one, but she has been progressing fast. I will also try the coconut oil when she is able to drink.

She cannot use a straw to drink yet, she is eating through a catheter in her nose, and soon she’ll need to do one that goes directly from her stomach through her belly (or so the doctors say it is important that she does it, so to do properly the therapies). Her neck and mouth and lungs are very “weak” yet and she cannot swallow nor talk yet.

As of the family, we’ve managed that out - partially for the rehab is more strict with the time spent with her.

All the best,

Luiz.


#17

Dear Allie,

Thank you so much for all your description! I could finally have ± a picture of the extension of the recovery steps - even though as you said, the cases are different. And I am really really happy to hear of your daughter’s recovery and strength!! <3

I do hope she gets to the swimming soonish - she really loves it and is looking forward to it!

After seeing your comment I’ve asked my wife wether she is having double vision, but she answered no, and it seems she can see things very clearly. But I do have one thing that is bugging me a bit, and she cannot answer me properly about it too: anytime there is something regarding letters or words, she closes her eyes and does not want to answer me anymore. She can understand us perfectly (both in Portuguese and English and even a bit of German), but it is as if she had trouble recognizing or concentrating on spelling and letters. It might anyway be too soon to know about it - she will start her therapies next week and the therapists might have a clearer picture of it.

Once again, I am really grateful for hearing what have helped your daughter therapy-wise. The doctors are not certain how long she would be in-patient at the Rehab center, but she will start next week (roughly, 1 month after the rupture). I do think it’d be best for her to be there as much as possible to recover as fast as she can with around the clock professional help - but of course, only if she is willing to. I am having still trouble to understand when and in which state she would be discharged from the in-patient treatment - all the doctors say is that they’d recover her basic functions “as much as they can”. But they can’t predict any time nor extension of recovery yet - though they are, as I’ve written, really optimistic with her past week’s good recovery.

All the best and thank you again,

Luiz.


#18

Hi Richard,

Thank you very much for your reply and kind words!

Yes I can, we have managed a way, and I believe they started to understand that such time when I’m alone with her is important too, specially for her, for she confides more with me and gets quite peaceful when I’m around.

I too understand their position. During a moment of certain stress, I think I might have overreacted a couple of times with them unfortunately, and this is greatly my fault. The whole situation is really tough for all of us. But in the end we are just a group of people who really really love her and wants what is best for her no matter what; so we did find a common understanding I think. I also worry about them very much, they are really like second parents to me.

As of caring about myself, I really liked hearing your words. To tell you the truth I was first in panic, completely lost, feeling have lost my whole sense of orientation and unable to do anything besides sitting next to her while in a comma. When she woke up, things changed. I might be able to start working part-time next week (i’m an artist and a teacher). I can’t stay the whole day at the rehab clinic due to their rules - but I can spend my afternoons to make her company and support her in anyway I can along the upcoming road. Finding this balance is indeed challenging. I really liked the word you used, making my life sustainable to me. I’ll keep that in mind. : )

Thank you!

All the best,

Luiz.


#19

Luiz: My 7 year old daughter had a Cerebellar AVM rupture on 9/14/2017. She spent 10 days in the ICU and one month in inpatient acute rehab. She lost 20% of her body weight (was skinny to begin with in the hospital). She returned back to school with the help of an aid 1/2018. She continued with outpatient rehab thru June 2018. They say kids recover much quicker than adults. Once she got back on her feet we started discovering all the psychological and cognitive effects of a brain injury. The best advice I can give you is take life one day at a time. There will be light at the end of the tunnel. It takes time and she will someday be 90% of her former self. Focus on the positive that she is still alive. Thank god for every single therapy session or doctors visit as to have the ability to do that is a blessing. We never asked said why did this happen to us? Rather we said thank you god for being blessed with the opportunity to be able to recover, rather than face death. Stay Strong and take baby steps.


#20

Sharon, You explained it SO well! :smiley:


#21

Our daughters’ ruptures were relatively close (Jan. 2017). How is your daughter doing now? How is school going for her?