What to expect

Hi there.

It has been about three weeks since my AVM diagnosis, and I am slowly starting to understand more about what is in store for me.

I have an appointment on Thursday with a vascular neuro-surgeon to discuss my options, but it sounds like I am looking at an embolization and then surgery for my AVM, which is located in my left frontal lobe.

I had an MRI done initially because I was having some really weird memory issues, and I got concerned. I mean, I will forget entire experiences, even if I am looking at a picture of myself doing something. And not stuff from childhood --- a trip to Mexico with my boyfriend in April 2011, a friend telling me she is pregnant a few months ago, a night out with my girlfriends earlier this spring. I forget what the inside of places look like, even if I have been there dozens of times. I forget details of things I have done or places I have been. It's totally weird.

The MRI showed my AVM, which is not bleeding, but seems to be causing the issues with my memory.

I am scared and confused and pissed off and frustrated... as I am sure most of you were when you were first diagnosed.

I am curious if I can get some idea of what to expect. I have a whole list of things to ask my surgeon, but waiting for that appointment has been really hard. My mom is a nurse in KC, and she is planning to come up and stay with me after my procedure, and my job is amazing and I have short-term disability I can use, but I just have SO MANY questions.

What is surgery like? What is the recovery like? I have read online that if they can get the entire AVM in one shot, then surgery can come quickly afterward, with only one hospital stay. How much ICU time? How much recovery time at home? And what gets better? Will I recover memories, or simply stop forgetting new things? What else will be limited? Driving? Speech? Mobility?

Thanks in advance for anything you are willing to share,
Stephanie

Stephanie,...

Just a few suggestions,....

#1,...Write down all your questions on paper and take it with you,...
#2,...Take your boyfriend or a family member with you to each and every one of your appointments, take paper and pen/pencil, and write down the answers to all of your questions.
#3,...Don't be afraid to ask questions of your physician/neurosurgeon, a physician/neurosurgeon with compassion is a pleasure to work with, and one to gain your complete trust.
#4,...Read and study this wonderful site, read profiles and members experiences, contact other AVM Survivors, ask questions.
#5,...Follow your "gut", believe in your inherent instincts, if all is good with you, well then,..go for it.
#6,...Don't hesitate to obtain a second or third opinion on treatment, if needed.

I hope this lil' list helps, but please remember,...read, learn, gather information,... as,...information = knowledge, knowledge = power,...the power to do what is necessary for your future health and prosperity.

Your friend,...

William

Welcome Stephanie,

Chari's (Wife) AVM showed up while we were driving through Omaha. We ended up at Creighton's hospital after being transferred from the first one (name escapes me).

Doubt that they will do embo and surgery the same day/week. In the giant scheme of things, embos are usually pretty safe and non-invasive. You will be tired from being drugged some and being prodded all the time, and some pain in the groin from the tools. Typically one night in hospital ICU so they can monitor you, then released to go home. Doubt you have any restrictions from the embo.

Best wishes,
Ron, KS

Thanks, you guys!

I will say the hardest part of all of this is feeling like I am not in control of my life right now. I have so much that I want to do this fall, and trying to fit brain surgery into the middle of all of it is not really working for me ;)

I do indeed have quite the list of questions, and I am not afraid to ask them. David and my mom are planning to come with me to this appointment, and I know my mom will have lots of questions, too --- especially about the follow-up care, if she will come up from KC to stay with me.

I am a bit of a control freak, so I have done a good deal of research already. What is not readily available is the information about the recovery process. I want to be able to tell my HR reps how much short-term disability I think I will need, and I have seen everything from 10 days to six months recovery online.

Finally, not to over-share, but I see a therapist twice a month and that has helped immensely. This is a big thing to deal with, and I would suggest to anyone going through this type of health care crisis to talk with someone outside of family or friends. He suggested that I journal, so I have been doing that, too, which I also think is helping.

Thanks again.

Agree with the counseling. We did that for the whole family and it helped tremendously!

Hang in there.

Ron, KS

Hi Stephanie! Welcome and you came to the right place for support to help you thru this! This site was my lifeline when first finding out about my AVM back in February, 2011. What you will come to realize thru this site is that there are no 2 AVMs that are alike and everyone has their own unique journey thru this, from diagnosis to being told that you are AVM-FREE. And another thing that I realized is that patience is a must-have; which I didn't have much of, until now :)! The good news is that there have been so many medical advancements with treating AVMs yet nothing is instantaneous and takes alot of time between appointments to get results, updates and answers which is why patience was so important. I finally realized that I had to turn everything (all of my fears, anger, etc.) over to my God and He certainly blessed me in so many ways! I did have a bleed back in Februrary, 2011 which is how they diagnosed my AVM. I had an embolization the night of my bleed and was scheduled for surgery 3 weeks later. The morning they took me down for pre-op, they ended up cancelling my surgery as the emobilization treated 90+% of my AVM and was too small for them to justify open brain surgery. I did proceed with stereotactic radiation last summer and was rendered the AVM-FREE report 12-months later! I did spend 2 weeks in ICU yet most of that was because of my bleed and they were monitoring the brain swelling as a result of my bleed. As far as the recovery from surgery; I am not able to lend any inputs on this one as I did end up having to have surgery yet I am sure you will start reading thru the many success stories on this site from people who have had surgery and is now AVM-FREE. It's great that you have your questions in order and that your Mom will be with you; don't hesitate to ask your doctor any and all questions that come to mind. Please let me know if you have any further questions based on my experience; I would be more than happy to share anything with you.

And pleae know and have Faith that this will all get better for you, with time!

Peace be yours as you persevere thru this!!!
Michele

Hi Stephanie- The recovery time all depends on how your surgeon is planning to treat your AVM; embolisation, surgery, or radiation. It can be necessary to do two of those options because some AVMs are more complicated. Sometimes they require you to have a angiogram to provide more detail. You are ahead of the game because you haven’t had a bleed so that’s good news. Let us know what options the surgeon recommends. Every AVM is different so that is why it’s difficult to tell you what to expect.

I agree with everything that William said. All 6 points are right on. Especially having someone write down the answers to the questions you ask!! The stress of the appointments and the things they tell you are just so overwhelming.
I also agree that counselling is a great idea. I wish that we had done that. It was difficult because no one really understood what an AVM was so it was sometimes a confusing feeling.
My son was diagnosed with his AVM 4.5 years ago. He had Gamma Knife. We have just found out his AVM is gone from the Gamma. It is a long road and just so difficult in so many ways. You will go thru so many stages of grief and fear and sadness and anger and all of them are normal. I always say that it's like "the death of the life that you knew" and you have to work thru all of it.
Our surgeon was able to tell us the expected percentage of deficits my son would have IF he chose surgery and the percentage of recovery expected. Maybe your surgeon will be able to tell you this. Of course they never really know but they have a good idea depending on the area of the brain your AVM is in and what could be affected.
Read read read and educate yourself.
I was on this site every day for probably the first 2 years. It was my lifeline to sanity.
Good luck, Stephanie. My heart goes out to you.

Welcome Stephanie. It really is difficult to tell you what to expect and how long you may be out of work. So many factors can determine that. Your surgeon should be able to give you a good idea of what defecits you may have based on the location. Like others have said, every AVM is different and every experience is different. I will tell you that you will experience exteme fatigue for quite some time after surgery. Allow yourself time to heal and rest and recover. Don't try to jump back in to work too quickly. Best wishes to you.

Hi, Stephanie. Although for various reasons I have decided not to treat my AVM, the neurosurgeon I consulted with said (for me) it would takes 3 - 5 embos. He would do them weekly with 1, possibly 2 day stay at hospital. After the last one, I would stay in the hospital for my crani that same week and stay 5 - 7 days.

Hi Stephanie,
For my avm journey, I have found it extremely important to count my blessings. I have been counting them every day! I also learned that I had to let go of control, and there is a lot of freedom in that! The avm journey is unpredictable, even our neurosurgeons will not be able to give a definitive answer to recovery. I do recommend the book “My stroke on insight” by Dr. Jill Boltle Taylor. I am very glad you have found this site. It has been a gold mine for support and knowledge for me! I wish the best of you in your upcoming appointments, treatments, and surgery.

I have read that book twice. She only lives about 20 miles from me. I wish everyone could come to Bloomington to see her project...there are giant brains all over the town. They are anatomically correct but "decorated" by various artists. Another good book is "A Bomb in the Brain" by Steve Fishman. He gives alot of history of neurology and neurosurgery. I'm reading it for the second time right now.

First, William did a great job on the six points. Definitely do all six of them.

I don't know how your recovery will be from surgery. All I can do is tell you about mine. My operation was done back in 1989. It was a 29 hour operation and I was in the hospital 3 to 5 weeks. I have a range because my wife and I disagree. I say 5 and she says 3. Don't tell her, but she's probably right. I was so out of it back then, I don't know what was happening. Then, I was home for a few weeks where she gave me some kind of shots twice a day. It was about 9 weeks before I started going back to work. Had to work half days for awhile.

I've probably recovered about 90%. I used to be upset until I found this website. Now, I know that's a good score for recovery. Memory's are worse than ever. Some things come back and some are gone forever. I have a real problem talking with people. This keyboard works so much better than my mouth. I can't talk well in groups of people. My shrink says that might be a separate problem called social anxiety disease.

Your point about working with a shrink before the surgery is a great idea. I wish I had done that. Then, he'd know a lot more about me. Instead of me trying to remember who I was while I'm trying to figure out who I am, he'd know and could just see what I was now. (That sentence just came out, but it's hard to read.)

It will be interesting to keep track of you and how you're doing. Keep up the notes.

I concur with the others that writing down questions and answers is so important. I would also suggest more than one person write down the answers. We all hear different parts of the answer and it is good to review later.

A lot of the questions you ask can't be answered as each case is individual. The area of the brain the AVM is located in is the most important factor as different areas impact different functions. I would ask those questions of the neurosurgeon. He/She will have a better ability to explain possible scenarios based on the information of where the AVM is located. How close to the language centers is it? Is it located near the sensory/motor strip? (Sensory = sensation, motor = movement). Even given that information there is no exact prediction that can be made. In our scenario, the AVM was left frontal lobe. He had brief decrease in word finding and peripheral vision which probably related to swelling on the language center and occipital nerve. These have both resolved.

My son had embolization to block the blood flow done on a Thursday and removal of the AVM on the next day (Friday). His neurosurgeon said the embolization was being done to help define the location of the AVM. It showed up as black during the surgery making it easier to remove.
He will have a three month angio and a six month angio done to make sure the AVM is totally gone. We are extremely lucky he has had no further neuro deficits! The neurosurgeon said the left frontal is a very "quiet" area of the brain!

I will have to get that one! Thanks for the suggestion!

Stephanie,
I was diagnosed and successfully treated 6 years ago. This is my experience in a nut shell. Couldn't work for about 4 months. In and out of the hospital - 4 embolisms and a crainitomy. The #1 biggest thing was BORED. I just watched tv and played poker. I never felt sick. My friends were confused that I could walk, talk, and act so normal and calmly state "another brain surgery on Tuesday" in a matter of fact tone. #2 thing was sympathy, which is way under rated. People from my mothers' church, people I never met, sent me books and movies and general get-well packages. How nice. My close friends didn't treat me any differently. I was basically the same give or take a casual Tuesday brain surgery. My mother wept.

Four months later I walked out of the hospital 100% cured.* I went back to college a month after surgery and people literally did not believe me when I told them. I was completely normal.
*I had one unexpected seizure 3.5 years after surgery and now have to take twice daily medication for the rest of my life. Not a major obstacle. I'm also blind in my upper left quadrant which is also not a big deal. I have to check my blind spot before making a left turn while skiing. Sometimes ski into a small tree branch I didn't see on that side or bump my head on a cabinet door that I didn't see was open. Otherwise not a detriment.

Just my experience. Take some solace. It's not a mystery diagnosis. Just git 'er done.