I am a concerned daughter looking for some reassurance about my Mom’s condition. If you go to my profile you can view a watered down version of all my Mom has been through the past 7 months. Her AVM was located in her cerebellum and actually ended up healing itself the dr’s have said. Since getting out of the hospital she has been to a rehab facility for occupational, physical and speech therapies. She has now been home for about a month and does therapy at home during the week. I do not have any idea what to expect with AVM and the Dr’s aren’t really sure what to tell my family either so I am turning to this board to see what others have gone through.
Here are some of the questions I have:
My Mom has been having a terrible bought of anxiety and I feel depression on top of it. Her anxiety is so bad that when she is sitting in the chair she has to switch her arms to a different position literally every 20 seconds. It has gotten so bad she has worn sores on her elbows and has to have pads on them. She is on Valium and an anti-depressant. Is this common to be this anxious?
She is still having to walk with a walker and has trouble sitting up for more then 4 hours in a day. Is this normal? I don’t know what kind of a time line we are looking at.
Her dizziness is still getting better but it is still there even though the AVM supposedly took care of itself. No one can really give us an answer as to why she is still dizzy. All I can think of is that her brain is still healing from all it has been through.
Her personality has completely changed. She is almost like a hollow shell. She no longer wants to be around people, does not like talking to people because it makes her anxious. Just the fact that the other day was Halloween and she knew people would be knocking on the door made her so anxious the other day she could barely stand it. At times she acts like her old self but it is short lived.
Does anyone have any advice or has anyone had a similar experience? Thank you so much!
I understand your concern about your Mom. Here’s some thoughts, I hope they help.
Without a doubt, she suffers from both anxiety and depression. The medications should help, but there are many different kinds and doses of anti-anxiety drugs, so it might take some experimentation by the DR to find her something that works. With what she has faced and might be facing, it’s easy to understand anxiety. I highly recommend counseling for her, you, and other members of the close family, to help you all work through all that is going on. After Chari’s AVM treatments started, we went to an excellent counselor who helped Chari, me, and our two school age kids. AVM’s affect everyone concerning anxiety/depression. It really helped all of us.
Timeline for recovery are as varied as the people who suffer. About all you can do is push to get all the Physical Therapy you can. Sadly, once a patient plateaus on improvement, insurance usually stops paying. We continued through an excellent personal trainer (not a physical therapist) after the insurance quit. It helped immensely.
Dizziness, no clue. If something triggers it, such as standing up quickly, maybe move slower???
Personality changes are not tough to understand either. Not sure how to adapt to that.
Wish you all well.
Thanks so much Ron! We have been trying to get her to see a counselor but she has refused. I am seeing one and it helps me so much. She just says she is sick of Dr’s and doesn’t want to see anymore. Her therapists recommended this week for her to see a neuropyschologist. She has see one before but that was more for testing to see how she learns. I think this is a great idea as well but she doesn’t want to do that either. All we can do is keep encouraging her. I’m out in Cincinnati and she is in Nebraska so I only get bits and pieces of her every day struggles/achievements. That’s a really good idea about the personal trainer! I never even thought about that! The only thing I worry is that she will not want to go…as she doesn’t even want to go out of the house! She has not been out to eat or anything since March! The dizziness is more triggered when she is sitting up…when she is laying down she says she is not dizzy. But I think it’s kind of a constant thing when she is sitting up…not so much a quick passing thing. Thank you very much for your response.
It’s been 3 years now since my husband John had embolization for his AVM. His personality has completely changed. He no longer wants to be around people, go any where, or have noise around him He’s been going to a psychiatrist, on depakote,but nothing helps him.
I am the one that therapy helped. I make my husband get up & do things. He jumps down my throat all the time, but now it no longer bothers me because I was told by many doctors that it’s not me, it’s the brain damage caused by the embolization. He can’t help himself. John sees a neurpyschologist & a neuropyschiatrist. I thank God my husband is still alive.
While I can’t address the anxiety and depression your mom is going through, I can say that I have seen both reading the posts on here. I’m guessing that it’s quite common for anything affecting the brain.
But my AVM was also located in the cerebellum so I wanted to address the dizziness. As you probably know, the cerebellum is the center of balance. Even though my AVM was removed some time ago, the cerebellum is still affected and I’m still dizzy. Although there is improvement, healing of the brain is a very slow process from what I’m told. Ron is so right when he said “timeframes for recovery are as varied as the people who suffer”. Be patient (as I know you are). I had a craniotomy in October of 2006 and I’m still dizzy 5 years later. Granted I went through PT, OT, etc. and had to learn to walk again unassisted but I did that and of course the dizziness improved…a little. I have read that some members with AVMs removed from their cerebellum had a much faster timeframe for recovery. It just depends. Hang in there and she’s very lucky to have you on her side.
Sometimes caretakers of those with AVMs have just a hard time if not more than the person with the AVM. Perhaps you can get some advice from other caretakers. There are several sub-groups on here that you can join but look at two things…the number of members and the last posted activity. I was going to list one but I saw several. (Yes, you can join them all if you wish). Best of luck and if you ever need to reach out, or whatever, you’re in the right place. I’d be happy to help if you have any questions.
Thank you so much everyone! It really helps to have some support and to hear other people’s stories. I appreciate each and every one of your responses.
When I had my AVM I became very depressed and anti-social. I was always angry. When the blood on my brain absorbed this all stopped. I also was unable to walk, this too passed. I am no doctor but this is just what happened to me and it is somewhat similar to what your mother seems to be going through. As far as her acting different, maybe it is the area of the brain where the blood is sitting?
Wish you the best,
Just wanted to relate. Not sure if this helps at all. I had a golf sized AVM removed 2009. This was after 6 embolization. Had minor complication due to the AVM/ surgery/embolization.Vision problem. Anyway, LOST MY JOB AND DRIVER'S License. On top of that Anxiety/depression set it. Same issues --lost interest on family/friends. My reasoning was simple. I just avoided wasting my time on people who did not really cared about me. Call it selective but I still retained my closest relative. My wife/kids my mother sister and brother. That's it. Dizziness is always there. This was due to anti seizure medication-Lyrica. This is my third one die to same dizziness. This seems to work better than the rest. The worse one I had was Kepra. I was so dizzy. Dizzy as " the Pirate of the Caribbean " character. My suggestion is talk to Doc. and try a different Med that works. I was told each Med works differently person to person. Second---Depression is an evil the lurks at everyone. Worse on others. Like us--AVM people. I can't suggest here since I have issues myself but what I do that helps somehow is. Got rid of dead logs--useless friend and family. I stayed away from them. Walk away if I get annoyed. Bike( stationary or road bike), walk, shop, watch a funny movie, Bought a kareoke sing along, travel away from home/vacation trips.
Sorry if I am not helpful. I am one of the AVM people with issues.
Good Luck to all,
Allan( Still an AVM survivor)