Hello, my wife is currently undergoing treatment for her second bleed. The first was about 7 years ago. This one has been significant for us though. I stumbled on this site just looking for as much information about why it happened again. I still have no solid answers…i am proud of my wife. Her will to keep trying to do the tasks that seem so basic is amazing. I am scared of course that recovery may never fully come but i am so proud of her will. It has been 5 months now since the last bleed. Many visits to hospitals, rehab and er’s have come and gone. I have been a train wreck at multiple points through out this, again. When i see her eyes smile and can feel her warm touch it still makes me hopeful. Ive realized there is not much that i can do about it except hold on and ensure she is getting the best care from me, family, nurses and the docs. i hope i can help another with the experiences ive delt with as a caregiver. It is incredibly difficult to watch your spouse go through this. There are so many times i wish i could just make her feel better. I want to say this to caregivers if you ever are in question about going to the hospital pre or post treatment just go. After an embolization, complications came for us. If we hadnt gone in, it would have been worse. the symptoms were so subtle mixed with recovery from the bleed it seemed like a temporary setback from the procedure. As a caregiver, you pay attention and if something seems strange bring it up to the medical professionals. If they dismiss it keep trying and keep watch of your concern. This whole time has been exhausting for us. I have to remind myself to make sure i am taking care of myself as well. I take opprotunities to get my breaks in when i can. I am useless to her if i am worn out. In the end i think it is all about making her feel as comfortable as i can while she is going through this tramatic experience.i picked up a quote from a hospital we were in i cant remember who said it so im terrible for that, but it went something like this-“people will forget the things you say and do but they will remember how you made them feel”.
At times ive felt like its hopeless then my wife shows me she is still trying. It make take a day or two after i get that hopless feeling but she keeps pressing on. She is an amazing woman!
Michael,
Welcome to avmsurvivors! Its great you found us and I’m sorry your wife is going through this.
You sound like a great couple and you’re clearly a great husband. The extent to which you understand her needs is brilliant. Really. I think you’re doing ALL the right things.
Welcome in. I hope we have some members who can offer support to you but I know you’ve got a lot to offer others. We have a “parents and caregivers” category where you may find stories by others in a similar situation.
Very best wishes to both of you.
Richard
Hi Richard, and thanks for the welcome!
Great you’re here with us Michael, a lot of amazing folks on here with a wide range of experiences. Sounds to me like you’re an amazing individual! Take Care, John.
Hey John thanks, i was reading some of the posts and there are definately some amazing people here.
I’m glad you’re not alone. Welcome to the family.
Hello again @Michael32
Your post made me cry but in a good way. I feel the love you have for your wife. I am so sorry she has had 2 bleeds.
She is in their fighting. I will tell you a story that is now funny to my husband and I. I was 43 and having terrible headaches and thought my migraines were changing. My husband was working out of the state and would usually fly home for the weekends. He had already decided he hated working in Arizona ( no offense to anyone who lives there) He is from Seattle and needs to see green and the water.
anyway he thankfully changed his mind and came home for the weekend I was late picking him up and he thought I was drunk which is weird because I never drink and drive. I was not really talking much and then started to throw up and not make it to the bathroom which I have never done so he thought it was a migraine and put me to bed. meanwhile I was thinking I have a brain tumor but could not really talk.
The next morning I had some how made it the toilet and was barfing and he got up to feed our animals he said looking back I was leaning on the wall and slurring my words. Then I felt like electricity was going through my face and I had a major stroke and could not stand so I ended up pulling the entire toilet seat off standing for a few seconds and banging myself between the wall and the tub and landing in the litter box which saved my face from breaking…I thought this is not good…
Then my husband Jim came in and said we are going to ER once we got there I went into a coma and its true you can hear when you are a coma.
anyway to the funny part I woke up a few days later when they figured out I had 5 blood clots in my brain preventing the fluid from leaving my brain so it was being crushed by the fluid.
I happened to wake up when they were just finished with an MRI/MRV and had a bunch on sensors on my head and I started to pull them off with my good hand and my husband started to freak out because he thought they were going to do surgery and needed those markers as a guide so he telling me to leave them on and at this point I cant speak so I flipped him off and he smiled knowing I was still in there some where deep but I was there. I had no idea I could not make facial expressions.
When you have a brain injury and your brain is not working right its extremely exhausting. I had very bad brain damage, could not do simple math and I was a trader who dealt with 100 of millions of dollars on a daily basis.
My husband did research and gave me coconut oil in my tea or coffee first 1 tsp a day and worked up to 3 tsp a day. Its a great fat and I was not getting better until he started this. Then about 6 months later I got the avm and had my first angio 8 months after my 1st stroke.
I went back to work part time 13 months after my first stroke. The doctors thought it was going to take me 3 years to be able to recover- I told them it was the coconut oil.
We need fat for our brains to work - I still have daily brain pain and other stroke body pain but at least most days I can get out of bed and do some things.
Its hard no matter what you used to do because you change with your brain trauma. I did not have a great boss and so my husband saw that I wanted to do nonprofit work which I am very lucky that we are able to live off his income and now I volunteer with various groups and have a nonprofit I started with friends.
I mourned my old self accepted my new self and 6 years later still strive to get back to my old self.
Thank you as one wife who has been through hell that you have not given up on your wife. You and my husbands are saints.
big hugs
Angela
Welcome! I wish the best for your wife. I too have an AVM in my brain. My husband is phenomenal. It sounds like you are doing what she needs you to do, being supportive and helping her one day at a time! I know every day will be different but just do the best you can. I also hope that you have support. Best wishes to you both!
Thank you for the welcomes and best wishes Karen62, Angela4 and Breeze.
Breeze i do have support and they are helping tremendously especially when it gets rough and i need a quick kick in the rear.
Angela that is an amazing incredible ordeal you and your husband have been through. I found the flipping off part funny because my wife has a tendacy to do that to me as well. Its funny how i can see her when she is upset about something small and fusses about it. There are times throughout the day that you wonder if things will become normal and those little things let me know she is still with me. What the new normal will become is still to early to see but its the little stuff i can pick up on that gives me some relief. I read that and it felt so similar, thankyou
Yes since you know your wife so well @Michael32 you are the best to to convey her successes, even to her. One thing when I was still pretty messed up is my husband gave me the chore of getting the mail ( even on Sundays) some days I could not walk that far which is only about 100 feet from our front door. But I recall I felt like I was contributing to something and I would sort it etc. Once she is able give her a small daily chore to do- Also after every visit to the hospital we would go for ice cream. I recall really looking forward to it.
I know I did not want to talk to anyone on the phone because I knew I had problems speaking and finding the right words. When we would go to family events my husband or sister would stay by my side to often "translate " for me, which I could look at them and they knew when to take over, which later my husband told me the doctors told him not to do but I found it very helpful and reduced my stress level.
Your wife sounds like a lady I would get along with fabulously. I did loose my ability to swear when I had my 1st stroke which I was very concerned about since I worked on a trading floor. When I had my last stroke after my embolism it thankfully brought it back.
They have proved that people who swear tend to be able to handle pain more and tend to be smarter. So tell her to swear!
hugs & happy holidays
Angela
Micheal,
In 1990, I elected to get my giant AVM fixed in my brain, and what a MAJOR recovery it was! Most of my recovery took @ 4-5 YEARS, but I hope I will ALWAYS recover for the rest of my LIFE!
Power From WITHIN, and Strength From ABOVE, ANYTHING IS POSSIBLE!!!
May God be with BOTH OF YOU TWO!!!
Lisa A. Stuckel