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AVM Survivors Network

New Member Introdcution to the Community


#1

Hi Everyone. I just joined the AVM Survivors Community on behalf of my wife. My wife had a ruptured AVM in her Cerebellum six months ago (April) which came out of nowhere. We did not know she had an AVM. Between Neuro ICU, General Neuro Ward and Acute In-Hospital rehab, my wife was in the Hospital for close to three months. During her stay, she also had a VP shunt implanted. Her discharge was followed by a month of home based therapy and she in now in outpatient physical therapy. She also had a surgery four months after her hemorrhage (late August) where her AVM was successfully resected. We’re now six months in and feel the next six months are critical to my wife’s recovery. Unfortunately, we feel like no one is coming to us with a game plan. No one takes an integrated, holistic approach to my wife’s path forward. We’re dealing with different doctors and therapists as one-offs and feel like the responsibility is on us to put all the pieces together chart my wife’s rehab path forward. My wife can walk with a cane now albeit very tentatively. She’s lost her sense of taste and with that has lost a lot of weight. She is vision challenged in that her eyes don’t converge (we are doing vision therapy and she just got prism glasses) and she is extremely fatigued. She does talk but her voice is not what it was before her hemorrhage. Given her bleed was in her cerebellum, my wife is not as impact from a cognitive standpoint - more motor, motion, ability to coordinate, etc. Again, we feel the next six months are critical and would welcome any thoughts on how we proactively take charge on my wife’s continued rehab.


#2

Welcome! Your wife has been through a lot, as have you as a care giver, in a fairly short time as far as brain type things go! It sure sounds like she has made some really good headway. We see a lot of challenges with medical systems and co-ordinating rehab, basically you need to be your own advocates. I’m fortunate, my wife is a nurse practitioner and knew what we needed to do, and say! I have an AVM in my left temporal that bled in May 2016, when I found out I had one, and what one was! I had gamma knife in November 2016, and will be following up with an MRI soon.

Its great you’re here, you will find a lot of varied experiences from some amazing people. Again, welcome!


#3

Hello & welcome
I am so sorry what happened to your wife.
It’s a lot and in a short time.

Sadly shocked about no one taking the bid picture lookat her health care.
You have to be the one or someone else close to her.

My husband did a lot of research when I had my rare stroke - which later resulted in my AVM forming.
One thing that he did was give me coconut oil in my tea or coffee he started out with 1 tsp a day and built up to 3 tsp a day.
Our brains need fat to heal

He gave me small things to do at first like getting the mail even on Sunday

Playing dominos or a simple card game

Playing www.gamesforthebrain.com

Taking walks together

My pain neuro also told me keeping a strict sleep schedule is important and starting your day with protein.

I slept a great deal at first and I think it was what my brain and body needed.

I also could not focus on reg tv and started to watch the old movie channel

I also did not want to talk on the phone cause I knew I had aphasia.

You are just in the beginning of the healing process.

Make sure you get a break too. There is caretaker fatigue and contact your local aging and adult counties services
They should have some information on caretaker group support.

Is she in any pain? If so I would ask for a referral to a pain clinic.

This group is very supportive. Don’t be afraid to vent or ask anything.

Hugs
Angela


#4

Hey Determined,
You’ve been given some really good advice here. My only advice to add here would be to start slow. Post craniotomy I tried to get back into things at the same speed as I had pre surgery and did myself more harm then good. This recovery thing is a long slow process and a learning for everybody involved. As Angela says she slept a great deal. Sleep is very important, it’s how the body recharges. I had my own (unreasonable) self expectations, I wanted to be right and I wanted it right bloody now, then when I couldn’t meet my own expectations I would berate myself for that. I had to learn to accept that things had changed and for a pigheaded male like me that was very difficult.
AND, (again as Angela states) don’t forget ‘self’ through this whole process. As a former carer myself I know the stresses involved and they can be huge, both physically and emotionally. YOU MUST LOOK AFTER YOU. If you don’t you will burn out and that will not be of benefit to anybody. So please do look after yourself too.
Do some research into your local services and use them to your advantage. Once outside of the hospital environment people are often left to their own devises and this is not a good situation to be in, so I recommend you do some investigation on what to access and how to access them. Some agencies have coordinators that can network with other agencies to get the best outcome for all involved.

Merl from the Moderator Support Team


#5

I completely understand how you feel. I had my cerebellum avm resected last March. Once you are medically stable the doctors are pretty much done with you. I’ve had to really coordinate my rehab myself.
I did do one week inpatient and then about two months of out patient.
Probably the hardest part for me has been the patience required. It’s a long slow haul, requiring lots of rest. Listen to your body; take breaks and naps when required. Don’t forget she had surgery just last August, that’s only a few months ago.
Here’s what I did:
Lots of walking- slowly increasing it as tolerated.
I did as much for myself as I could. Thinking that everything is good therapy, Even laundry and making myself lunch.
The pool has been fantastic. Especially with balance issues.
I also googled ideas for therapy. Mostly balance and coordination activities.
My physical therapist was more than happy to give me a bunch of info also.
Hope that helps
Hang in there, it’s a long haul for sure
Carol


#6

I had an AVM on my cerebellum in May of 2011. The doctors were able to remove the nidus after the bleed. Yes, I was very tired also. I would sleep 12 hours a day, plus naps. Sometimes I would get out of bed, decided I was still tired, and went right back to bed. This is normal. I would also tire easily. It is very good for the brain to get as much sleep as wanted after a traumatic injury such as this. This will get better with time. I lost a lot of weight also. I had no appetite and could not keep down much of what I did eat. You did not mention vomiting, but that is common, and was a fact of life for me for months afterwards. One thing to understand about someone who has had AVM on the cerebellum is the desire to keep your head still. Head motion is very taxing and troublesome, and it would make me vomit in short order. Things can make a person sick that would be hard to imagine as doing any harm. When people were visiting one time, the movement of my head as different people talked made me sick. I tried acupuncture and wrote about it here at one time. I don’t think it helped in and of itself, but getting out of the house and making the trip, and especially chatting with other people helped. I saw a complete quack who was into holistic health, everyone was “pre-diabetic” to him. I saw a chiropractor for awhile, but it didn’t do any good.
So, the key is finding good practitioners. Ask around. My recovery really took off when I started exercising at the local Snap. As mentioned elsewhere, walking is wonderful. I had to use a walker, but walking was still very helpful. Good nutrition, or as good as possible with no appetite and vomiting, is critical. I wish I had tried more protein shakes, in very small quantities given my restrictions. I could go on for a long time with advice and experience, but lastly, is there any depression for her? There sure was for me, and many others who have been through this. Have her look at this site–we’ve been there!


#7

My daughter who’s 11 now is the survivor. AVM also in her cerebellum. I would echo that the pool did wonders for her. See if you can get a one time assessment in the pool by a physio to recommend exercises that will benefit your wife. Even just walking forwards, backwards and sideways will be great for improving strength and balance. Sorry you’re going through this. I know how difficult and slow it is. Sounds like your wife is progressing a bit faster than my daughter did which is great. I think in general kids receive better services. Her rupture was in January 2017 and she wasn’t released from outpatient physio until just this August. She’s still receiving some physio and OT at school and she has weekly speech at school. I know what you mean about the speech. It took her a very long time to recover her speech. No words at all for 5 months and then slowly regaining clarity, volume, speed and expression. Her speed is still much slower than normal. I’m sure your wife will make great strides in the coming months.


#8

Sadly, the issue you raise is a common one. We have been through it with my daughter as well. You are getting lots of good advice here.

I would offer two more ideas. One would be to contact Rehab Without Walls and see if you qualify as a patient for them. The are therapists who focus on brain injuries…strokes and TBI.

The other is to find a physiatrist (that’s a medical specialty) that is experienced with stroke patients. This specialty is all about managing long term rehabilitation. Not many know a lot about brain injury, but if you can find one they may help a lot


#9

Thank you for your response and warm welcome to the community. I looking to learning and sharing our own experiences as well.


#10

Angela, thank you for all your suggestions. They are super helpful and very much appreciated.


#11

Thanks Merl, I appreciate your suggestions and advice on how to manage our situation.


#12

Thanks for all your advice Carol. Your comment on the pool is very relevant as we’re about to start aqua therapy as part of my wife’s PT regimen.


#13

Thank you so much for sharing your story. My wife is walking quite a bit now as part of her therapy regimen. Funny about vomiting - during in acute rehab stay in hospital, was affectionately referred to as the puker - that has since gone away six months in now. My wife does get sad from time to time but I commend her for her positive, upbeat attitude that I think is making a real difference in her recovery. Can I ask, you’re 7 years in now. Can you tell me how you’ve progressed and what are the biggest challenges, deficets you’re working through now?


#14

Thank you so much for sharing the story on your daughter’s recovery. Her story is very encouraging in that almost two years in, progress continues to be made.


#15

I’ve written about this elsewhere on this site, but I’m all the way back, as far as I can go, in my recovery. My memory took a hit. It’s not as good as it was. Also, I don’t think I’m as smart as I was before the AVM burst. It is my perception, but I could be wrong. An odd reaction is that I cry easily. Not sobbing, but tearing up when moved by something. My balance is not as good. I sometimes have to make a corrective step when walking or turning. It’s not bad at all, and I’ve never fallen since that time during the first six months or so. I’ve been told I should never try to climb a tall ladder or ride a bicycle. My speech can sometimes get slurred, especially when I am tired, and my enunciation does not seem as good most of the time. These are nothing compared to the after effects that some have to deal with. I’m alive–I made it! So will your wife!


#16

Thanks so much for your email, it’s truly encouraging and gives us a lot of hope for what lies ahead.