My AVM was found in 1988 in left temporal lobe. A crainiotomy and gamma knife were done in 1989. The tests by medical doctors since then have shown full recovery. The words “full recovery” mean there is no more leakage.
However, things aren’t back 100%. Social Anxiety and Depression are running strong. Memory problems and difficulties in talking with people are increasing in severity. Abilities at organization and general intelligence have reduced about 10%.
I know that my medical recovery is better than most people on the website. However, these things are making my life a little difficult. Today, I went to my psychologist with my wife as he explained some details of testing they’d completed recently. This testing provided the information above. Having her with me was something so valuable, I can’t express it properly.
She was able to bring up how I was having panic attacks with situations that I could no longer handle. For example, one afternoon, I walked into a nearby gym to sign up. I’d been working up the gumption to do this for at least 10 years. As I sat down talking to the guy about the gym, my eyes dropped to tunnel vision. I began to sweat and was having difficulty following his words. As I began to hear the thumping of my blood, I realized that I needed to complete and get out. As I paid the bill for the first month, I told him thank you and got up and left. I sat in the car outside for 20 minutes with tears flowing down my face. Once I could finally see, I drove home and hid in the house by myself for a few hours.
I was lucky to have that chance to recover. I was very lucky to have her there so she could tell the doctor about the situation. He described stuff to do to help the situation (cognitive behavior training), but I couldn’t hear. I was fighting a return to the this problem while sitting in his office.
Am I the only one to feel psychological difficulties as a result of the operation and all?
Thank you. Some of your reply sounds like you copied out of my notes. Anxiety, depression, panic attacks. It helps to know why it is happening. and why anxiety is hard “because it’s not something physical people can see”. I’ve tried to explain that to non-AVM people many times without success.
Just one question. What’s the name of the psychology book?
I feel exactly the same way as both of you! For me the panic attacks are the worst. I tried to go to my daughters open house at her elementary school and had such a major panic attack that I had to leave and sit out in the car. Of course, this was after making a complete fool of myself by freaking out and grabbing my ears and crying saying I gotta get out of here. I take a medication that helps with depression and panic attacks and then another for when I have an acute panic attack. I am going to try to get off of them as I’ve gained 10 pounds since being on them. I think the memory problems just may be something I’m going to have to deal with for the rest of my life. It’s now something that has become a standing joke amongst my friends and family. Hang in there Al and Ninibeth, at least we’re all here for each other!
Trish, I am taking Cymbalta. It helps a lot, but I’ve gained weight also. It would be good if it’s only 10 pounds, closer to 20 pounds. I’ve been letting the weight bother me. But, that is the wrong way to handle this thing.
I’m learning to accept what has happened and move on. If I just accept the memory problems, then I can do things to help. Like I carry a small notepad and write everything down. It’s always in my top left pocket. My family picks on me for it always being there. I use that to strengthen that I always carry it.
Make changes and keep going strong.
I had some tests done to determine IQ and other stuff. Then, I’m comparing these numbers to SAT and ACT test scores. It gives me an idea on what has changed. I’ve dropped about 9% in intelligence. Now that I have that in numbers, it can be accepted. Also, my score in verbal memory was below average. Now, I know these problems are real. That was the first big step. Based on me and others have similar problems with memory like you, you could just accept that this has reduced your memory.
The doctors say most of the recovery happens in the first year. So, the damage is done and I won’t suddenly recover. Talking with you people is helping me accept this change. Now, I’m working on how to proceed with the rest of my life. I’m working with meds and therapy. These won’t fix everything, but it will improve the situation.
Just moving one step at a time.
Al, sometimes it’s all we can do: accept what has happened, move on and take it one day at a time. However, never give up on recovering more. Sometimes it takes years!
Al said:
I had some tests done to determine IQ and other stuff. Then, I’m comparing these numbers to SAT and ACT test scores. It gives me an idea on what has changed. I’ve dropped about 9% in intelligence. Now that I have that in numbers, it can be accepted. Also, my score in verbal memory was below average. Now, I know these problems are real. That was the first big step. Based on me and others have similar problems with memory like you, you could just accept that this has reduced your memory.
The doctors say most of the recovery happens in the first year. So, the damage is done and I won’t suddenly recover. Talking with you people is helping me accept this change. Now, I’m working on how to proceed with the rest of my life. I’m working with meds and therapy. These won’t fix everything, but it will improve the situation.
Just moving one step at a time.
You all make me feel like I’m not alone…my AVM was in 2005 and I have all the same problems with anxiety and depression:( Taking paxil & wellbutrin to help. Thank you ALL for writing, it really means so much.
You are far from alone as far as I am concerned. Had head cut open in 1985 and did radiation last year. I am fine when the doctors work on me physically…but to just sit down and talk, etc…go to a gym…etc. Ohhhhhh I don’t do well at all. By any chance do you find that at times you break into a sweat and can’t write because your hands are shaking too much? Mine usually last approx 5-10 minutes and then poof…it is over as if it never happened. Has been happening much more often lately. But then again, so have the headaches.
Al & Trish,
Do either of you experience seizures?
I’m so glad you posted this. I’ve been having tunnel vision as well as other problems that only show up around other people. You’re not going crazy. It just takes time. I’ve had 3 bleeds. It is tough but God can pull you through. Let people close to you know the things you’re struggling with otherwise they won’t know what trauma you’ve endured. Hang in there.
Let me recommend The Anxiety Cure by Dr. Archibald Hart. Great read that answers a lot of your questions, especially related to medication. Blessings as you press on.
Cindy, I’ve never had a seizure, thank goodness! Does having seizures make these issues worse or perhaps the medication for the seizures does?
Cindy Phillips said:
Al & Trish,
Do either of you experience seizures?
I have never had a seizure (or at least that I am aware of); therefore, I don’t know. I did have another member tell me that Cymbalta does trigger them… but again, I personally have no clue.
Hope you are doing well!
I was wondering on the Internet and found a book by a Keith Stephens Buff on his recovery from AVM. Just wondering if anyone had read the book?
By the way, I just had a big neuropsychological test. It took about 5 hours. I had told me psychologist about that there were more problems than he knew. He was working on the Social Anxiety and Depression problems. I explained about the Memory problems and difficulties in talking with people. I also asked about the problems with organization and general intelligence. It was a real long test. I hope it was all covered by insurance. But, it is giving me better ideas on what works in this brain I got stuck with. I’m treating it like a 53 year old car. There will be some problems, just find them and learn how to deal with them. At least I’m trying to act that way.
I’m on a business trip to Europe. It should be fun and games. But, between flipping out at all the crowds, the strange food, and all the other problems; I’m not really enjoying it. I had to go find a hotel computer to even type this. Can’t let work know about these things. Gotta go.
Aw. I do hope you will be able to find something pleasurable in trip or stay there.
Al said:
By the way, I just had a big neuropsychological test. It took about 5 hours. I had told me psychologist about that there were more problems than he knew. He was working on the Social Anxiety and Depression problems. I explained about the Memory problems and difficulties in talking with people. I also asked about the problems with organization and general intelligence. It was a real long test. I hope it was all covered by insurance. But, it is giving me better ideas on what works in this brain I got stuck with. I’m treating it like a 53 year old car. There will be some problems, just find them and learn how to deal with them. At least I’m trying to act that way.
I’m on a business trip to Europe. It should be fun and games. But, between flipping out at all the crowds, the strange food, and all the other problems; I’m not really enjoying it. I had to go find a hotel computer to even type this. Can’t let work know about these things. Gotta go.
I found this in one of the blogs here. It’s good and worth repeating.
Site for scorecard on stroke recovery.
http://www.stroke.org/site/DocServer/card.pdf?docID=901
One other item.
Keep looking for someone to do therapy that works well with you. You will know when you feel the “click” that you can talk to them. Don’t be shy about stopping to go to one. It happens and they know it. Each person has to look to find a good therapist that they connect well.
I had to go through 4 of them before I found one that I could connect well. So, happy therapist hunting!
I feel sorry. You people were writing back nicely, and I forgot about this thing. Then, 7 months later, I find it again. This is one of the things that go on now in my head. Anyway, thank you to all you people for your thoughts. It helps me to understand that this is not just happening to me.
I feel sorry. You people were writing back nicely, and I forgot about this thing. Then, 7 months later, I find it again. This is one of the things that go on now in my head. Anyway, thank you to all you people for your thoughts. It helps me to understand that this is not just happening to me.