NEW AVM Survivor with questions

Symptoms & Treatment
1

Hi Guys and Gals, my name is Jason and i have just joined. As most people do, i have some questions but here is a bit about me.

I am 39 and had what i thought was a Stroke on 29 March 2012. I was rushed to A&E where they told me i had had a bleed in my brain.

That was it i thought. Couldn't talk properly. Couldn't walk, move left side and i was drooling alot. Basically i was half working.

I was rushed under blue light to Kings College Hosipital as they didn't know what to do with me and basically told i had had a bleed that had stopped and a stroke. Nothing showed on the MRI scan or Angiogram so lots of bed rest and physiotherapy etc.

Kicked out after 1 week and was lucky to get into a rehab center in Sevenoaks where they taught me to walk, move hands, speak etc and even type again. I was there for 8 weeks.

I have just had my second MRI scan and angiogram to see what was the cause of my illness and i have been told i had a small AVM burst. They couldn't operate as it was in my Basal Ganlia. After the scans i had to wait to see a consultant a week who has now told me that the AVM destroyed itself in the event and i was ok. Thank god!

I do have brain damage which is what i am coming to.

Can anyone answer these questions for me?

Is it normal to feel ok one day and absolutely exausted another? To the point of losing speech, reverting back to funny walks and acting like a child?

Will the worry of having more AVMs go? When i feel tired, i get paranoid they missed something and imagine i have more of these buggers in there somewhere.

Why do i have to go back for a check in 4 years? Doc told me i was good to go apart from the scarring (brain damage).

Does anyone find themselves daydreaming off. Sometimes i feel vacant. I mean i do lots of strange things i never did before like saying ginger clown instead of ginger biscuits etc but i do feel i am more mentally disabled now. It can feel odd.

Any advice on congnitive stuff appreciated.

:)

2

Jason, you had your brain bleed not very long ago. Healing from a brain bleed takes quite a while of time. It's not like having a broken leg which heals in a month. Your brain is different..it takes more time to heal. I had my bleed 5 years ago and I still get tired often. Everything question you are asking is what all of us who had a brain bleed go through. What I will say is that even though it takes more time than you wish, you will get stronger with these issues. There is no way I can say be patient, as that is the hardest thing when you have a brain injury. I will make you my friend on the Network...if you have any questions, please feel free to send me a Message! Hang in there, Jason!

3

Nice one Louisa :)

4

Hi Jason - it's much easier to get exhausted from the "simplest" things like focusing to more chaotic things like many conversations at once/ a group - mo matter the magnitude, it can be exhausting in which it might take extra time to recover.

Remember - go easy on yourself, especially because there are plenty of people who won't.

5

Oh - forgot to add - I think that there's an inoperable AVM sub-group that you might want to join.

6

If your concerned about these issues you should discuss them with your Doctor. In the beginning I called mine a lot. She was surprising willing to answer my questions. As Louisa said you are still early on in the recovery process. Before I had my one-year follow up angiogram, I worried about every little head pain. I used to have bad headaches before the AVF and for 6 months after the embolisation. It’s normal to worry, but if the Doctor said your AVM was destroyed then you should believe him. I know it is difficult but worrying can be bad for your health. I recommend to everyone that they read the book “My Stroke of Insight” by Jill Bolte Taylor. She is a true inspiration and she explains a lot about her brain injury and stroke. It makes you feel like you are normal to feel the things you do… like being easily tired. I had a brain bleed and stroke. I also lost my ability to speak. It does get better with time. I continue to get better a little bit each day, but the most progress was made in the first year. I wish you a speedy recovery.

7

Hello ebt247...as Wendy and Louisa had said, you are in the early stages. My AVM Bleed happened September 2008 and I still feel tired every pretty often. When I was recovering from my procedure, I was tired all of the time, and didn't get my energy back until a little after a month.I also had moments that my behavior was "childlike." Even now, I still worry about my actions. I find myself spacing off or daydreaming very often...even at work. I don't even realize it until a minute after. My speec was affected after my procedure but it did get a little better as I recovered, every now and then I still struggle with my speech, but not as often as I did during my recovery.

Things have gotten better, but it has taken time. Honestly, going through everything that I had gone through with my procedure and recovery hasn't been fun, but I feel like I am a better and stronger person because of it. I'm sure that you'll become stronger throughout your journey as well.

8

Welcome, ebt247. You have come to the right place. I'm going to try to address all your questions as briefly as possible.
First, I'm finding ANYTHING is normal with an AVM even if doctors can find no physiological reason for symptoms ( it helps to come here and find other people have same symptoms as yourself for which docs cannot find a specific cause) I am grateful when I wake up each day and am learning to deal with various symptoms whenever they appear.
I hope your worry goes away because it is my understanding that when an AVM is obliterated it is gone for good. HOWEVER they probably want you to be checked in 4 years to make sure it is ALL gone because if it's not, it can "grow" back.
Like everyone else, I say be easy with yourself. Do what you have to do to take care of you. For instance, I have cotton balls in every room of my house to pop in my ears if things get too noisy or chaotic. And I find I often have to take more breaks, even naps if possible.

9

Hi, I also had a bleed/stroke in my basail ganglia. Mine was also in march, it was march 8th. I do agree with wendy. Your qeastions and concerns should be written down for your doctor. If you are concerned and would like answers I would suggest calling, or setting up an appointment. It might also be a great idea to speak with neurophysiologist. I hope this helps!

10

Thanks all for your replies. My docotor unfortunately has never experienced a bleed before. I am going to change doctors but one thing at a time.

One thing i have noticed that really worries me is that i can go from being just tired to being unable to talk without slurring, unable to put thoughts across, unable to walk etc in a matter of moments.

I run a shop and the lady that had half the shop has decided to leave with immediate effect (nice). I really have no option but to go back to work full time 6 days a week. I went to do this yesterday but had a row with my wife about something or other. I was a mess. Crying like a baby. Unable to talk, walk, unable to even communicate. I had to sleep for 5 hours whilst my wife took the day off and did my work.

What i am saying is that i have never experienced such a massive difference in being okish to acting like someone with severe brain damage. I am worried as i don't have anyone to work for me and we can't afford to employ anyone. I thought i could do it but obviously not. Seem to be able to type ok but a day later i still feel zoned out.

What is with the extremes and the falling off the ladder about?

11

...and Dr. Taylor said her recovery took about 8 years...that is not to say its going to take you that long, more, or less...EVERYONE is different. The only certain things are that #1 It takes time. #2 The Brain Heals.

12

i feel exactly like that its horrid but i dont like talking about it to people because they cant understand as we look and appear normal to the outside world. one minute i think i could go to a supermarket and when i get there i just want to get out. since i had the bleed november 2010 and then removal of the avm i have constant dizziness vertigo and so changeable i have perservered with no medicine as they dont seem to work and am goin through with rehab excercizes but again no joy isnt it awful that you go from a healthy fit person to a person with a disability. you probably feel so frustrated at not being able to work thats how i feel and i had just passed my nvq when it happened. yeh i cant walk freely or unaided but maybe one day will just be normal again. good luck. susan