I want a roadmap to recovery, please

Two months ago I had surgery to have an AVM removed (Stanford Hospital). Honestly, I am still in shock. I am 39 years old and I had a stroke? I collapsed at work, was taken to the emergency room, and remember very little of my week and a half in the hospital. I woke up at home with friends and family there and it took me a while to comprehend what had happened to me.

I am told I was very lucky. If I cover my head it's hard for another person to tell that anything is wrong with me. I've noticed differences though. I had an excellent memory before the stroke and I can tell that my memory isn't as good. I tire out very easily. I'm not interested in food/drink (and I used to be a major foodie). I'm more sensitive to other people's moods and if they are angry, depressed, etc. I am more likely to pick up their emotions. I used to enjoy socializing with groups of people and now I find it hard to track more than one person at a time. I feel less able to deal with the usual unexpected stuff that life is made up of, so I am less adventurous. I've gone from being around people at work all day long to a very isolated existence at home.

Everyone keeps telling me that there is no "roadmap" for recovery. But I want a roadmap! I feel frustrated because no one can say, "Hey, you'll feel so much better in a X months." I've heard time and again that everyone has their own unique experience.

My happiest moments are the hours I can forget that the stroke happened and live in denial. I even asked my psychotherapist if there wasn't any way we could speed up the "emotional healing" part. Laugh.

So, I am curious to hear from anyone else who has dealt with recovering from a stroke and/or AVM surgery. Is it just a matter of patience? Did you wake up one morning and notice, "Man, I feel one hundred times better!" Or were the changes so subtle that it was hard to see progress? What did you do to keep your spirits up?

What helped you heal?

I very much understand how you feel. It is almost one year from my brain aneurysm rupture, one coiled aneurysm, one untreated aneurysm and a discovery of an AVM. Three months later I had my second brain surgery where my AVM was removed, two aneurysms coiled and two new aneurysm untreated. I was so happy to survive and live to watch my daughter & son continue to grow. Every day was a true blessing and I am so grateful I spent every holiday with my family and friends, even Thanksgiving in the hospital. Everything had a new meaning to us. I had very emotional days from happy to sad to happy. Fortunately my family has been patient and explained my emotions were natural and part of recovery. Staying positive and knowing each day is a gift kept me focused on my recovery. I prayed more than ever…and admit prior to my accident that my praying was sporadic. I joined support groups in my area and enjoy feeling “normal” with other survivors and care-givers. I also attended my first walk, and had so much fun meeting new people (survivors and non-survivors). Stay positive, stay strong, stay focused and give yourself a break because your body has gone through so much!

Hi joeylala. The fact there is no roadmap is our ace in the hole to recovery. I have seen many a member improve when other doctors said…no chance of recovery.

The brain can repair itself but it does so SLOWLY. While 2 months seems like an eternity that is nothing when it comes to brain injuries. The swelling in your brain can take up to 2 years to go down. The anesthesia that was used during surgery can remaining your body for up to a year.
You may wish to read this letter…http://www.waiting.com/letter.html

Being persistent and positive will help with your recovery. The key to success is to NEVER GIVE UP!
Today is a gift that is why we call it The Present! So stay strong and focused…you will improve!

Thanks for your words!

Thanks, Barbara H.

might help you speed up and fix things your going through. book about your brain and not taking meds but finding out what might the real issues what your body is lacking etc

Hi Joyelala! I know what you mean. I to would love a road map. It was great in the beginning when I could tell I was improving now its hard to see major improvements so I try to set small ones for myself for each week.
I had my bleed on April 25,2013 They did an Embolization with glue on the 26th. Meeting with doctors tomorrow about Gamma Knife. A little worried about that.
Still have headaches and can’t drive yet left arm feels heavy and not very good fine motor skills. Good thing I’m right handed:) I was very active and ran a half marathon on March 24th not back to running yet but that’s a long term goal I have set for my self. I try to stay positive .
Happy I’m here to see my kids grow my son is a senior in university and my daughter is a senior in high school. My family and friends have been great! Keep working hard and stay positive I know it’s hard. Set small goals for each week or month that might help.

I too wished there was a road map to recovery, I had to give up my job too, I was left with a field cut to my left peripheral vision and can no longer drive, I am a widow so my sister lives with me I am still participating in the ARUBA studies with the university of Miami, they do not yet know what is the best medical intervention for AVMs I would hope they would utilize resources on recovering from strokes that occur from current procedures, Miss Daisey


I had a bleed because of the avm in march 2012 ( some people call this a stroke) I still feel like I was in hospital yesterday and I’m still in denial about what has happened but not on what I can do but the progress has been gradual for me so gradual that I can not even reli notice any progress but every1 is different with their recovery and I’ve spoke to some people that have said they 1 day woke up n everything has changed…I no everyone tells you to be patient and you probably think I’ve been patient…how much longer coz I know that’s what I think but good things come to people who wait that’s what I believe and the thing that is helping me get on with it is I believe that 1 day it will all be better…I hope x

thanks for the info, I intend to order this book, I am also looking into music the empowers the brain, Miss Daisey

I feel the same way!! I don’t wanna go out anymore because I’m terrified of having a seizure or something, and I just am sick of some new problem popping up every month. It’s super frustrating.i am way less adventurous, and I feel like I’m not fun anymore. I hate it.

I understand your frustration. I've been there too. I'm over 5 years post bleed/crani.

There really isn't a roadmap, as difficult as that is to accept. Every AVM is different, every bleed is different, every surgery is different and every person is different.

You are just a mere 2 months post bleed. That is no time at all in terms of brain injury recovery. I was still mostly comatose after 2 months.

Significant recovery is possible. To what extent no one can tell you. For me in the beginning it was much easier to see improvements. I learned to walk again, that was huge! I could swalow on my own, that was huge too. Things like short-term memory were more subtle and not as easily visible. My balance has improved a great deal but it isn't quite there yet. I still deal with bouts of vertigo from time to time. I have homonymous hemianopia (vison loss in both eyes) and that will probably never come back but I've learned to compensate a lot. Not to say that I don't still bump in to things but not as often.

Yes, there will be improvements. They will not always be as fast as you would like. Sometimes they are painfully slow. Keep working on it. Keep regaining strength, keep fighting. As I've read so often on this site: It's a marathon, not a sprint.

As far as what helped me heal. My family. My husband and kids. They needed me. Not getting better was not an option for me. They helped keep my spirits up. My dog helped a lot too. He didn't care that I was bald with a big nasty scar all the way around my head.

I had a period of depression too. That's so very common after a brain injury. I saw a therapist and I was on anti-depressants for a time. I don't need them anymore but there is no shame in admitting you need help if you do.

Exercise, especially yoga has been very helpful too. Yoga helped with my balance and exercise just puts you in a better mood I think. I don't work out hard. I never could. Just a long walk works for me.

Best wishes to you as you continue to recover.

one day at a time Trish, little by little it gets better, I too find exercise like walking keeps your spirits up and is good for just about everything, I am 3years post bleed and I have to continuly adjust my goals.. Miss Daisey

Joeylalastart a journal start with what you remember prior AVM experience, write daily, read over once a week Miss Daisey bless you on your journey ♥

Everyone’s recovery is different but give yourself small challenges to help you memory. Give yourself 5 words to remember - write them down. Then through out the day repeat your words of the day. Complement yourself daily while looking in the mirror - when you feel yourself taking on the mood of those around you - go give yourself a complement. Start with small goals and work up to bigger ones. Celebrate when achieved - you have much to celebrate! The biggest one is your strength!

Hello joeylala- You have been through a great deal. I have a similar experience and was also at Stanford. What you speak about it with food social and feels is spot on.
You are young.... You will recover but you may still be sensitive to being in big groups for me its two years and I just can not do it unless its outside where I can go to a more quite spot
I would be happy to speak to you I live about 20 north of Stanford. Send me a friend request and I will send you my info.
Its very hard because no one knows what you are going through that is part of your support. Also I feel even now they watch and listen for any little mistake and convince themselves I am going to have another stroke or fistula

Yeah. We watched a video short in rehab about “faking it till you become it” which basically talked about waking up every day thinking positive thoughts and how that will eventually make you feel more confident and happy. Not sure if it works, but I figure it’s worth a try.

I also do phone numbers

External, audio and visual are a key component in recovery. It has been 2 years since I had three malformation (CCM) removed , 2 frontal and 1 temporal @ Stanford with Dr. Steinberg. Memory, input, activity level, must go slow and steady. Limitation are there and only you will know what they are when you try.

My husband describes it at the difference between being told to go to 7-11 and get couple of things and going into Safeway. It overwhelms him and he become confused, frustrated, then leads into anger and even rage at times.

Learn your new "Normal" and continue to reach out to this site. It has been 2 yrs and he is still recovering each day and as his wife of 43 yrs so am I. Listen to what your body and mind and spirit is telling you feel comforting and know this takes time. We are here to listen, bad times and good. Sending healing thoughts to you and those that love you as well.