Chris needs input

Hi all,

My friend Chris Wendt is a member of this network. He is a little shy so I’m asking y’all to reach out to him.

He had his AVM removed but has struggled with cognitive impairment. As he says, “I can’t think”. He describes his symptoms as: “dizziness, difficulty concentrating and multi-tasking, anxiety, forgetfulness, rumbling in my head when I lie down, ringing in my ears, feeling overwhelmed and unmotivated.”

McDougall/Spetzler at the Barrow Institute did his surgery and have reviewed his followup MRI’s and cisternogram but they have no recommendations except to have another MRI in 6 mo.

Any encouragement, insight, experiences, ideas, etc. that you can provide would be super.

Thanks bunches.

Chris Wendt’s friend Pam Smallwood

Chris & Pam,

Chris, it is so wonderful to see that you have a friend that is willing to be there for you and to help you through all this. Pam, it is very comforting to see that Chris has you, there aren’t many people like you that can stick it out with all that an AVM can bring to bear on a person.

I must say that I have no medical background what-so-ever, I only know about what I’ve experienced. Chris, in response to the “I can’t think” statement I can say that I’ve dealt with and still have times where I have to deal with this same limitation. In my case, (my AVM is still active) I am slow in thinking, if at all, for some time after a bleed. I have to imagine that anytime something foreign happens in the brain whether it is a bleed or surgery the brain reacts by slowing down its functioning ability. I think it does that to force us to rest, sleep, catnap. I believe that that is how our brain tries to heal itself. A normal healthy person is supposed to get like what, 8 hours of sleep a day to be healthy and to operate at full capacity? Now let’s take our brains that have been impinged upon by something foreign. No wonder we experience these things.

When I get stressed it is like my brain literally comes up against a brick wall, physically and emotionally. I can see and feel the wall and know that the answer is right on the other side but I cannot get to it, no matter how hard I bang my head against the wall. So I’ve learned that I have to just accept the situation and let myself calm down and 95% of the time that means I have to go to sleep.

About concentration and multi-tasking, there too I have problems. I don’t even have to be tired or stressed to experience difficulty. It seems to be mainly based around sounds for me. If something as simple as a phone ring or a dog bark happens and I’m trying to accomplish a multi-step task, I will lose where I’m at within the process and have to stop and go back to the beginning to see where I’m at. As for multi-tasking, I’m very limited. I used to work in a high stress, high demand office environment with phones ringing and co-workers updating each other and two computer systems on my desk… you get the picture, now a phone ringing or a family member calling out totally throws me.

I still get anxious but not as much as in the past. I think my anxiety stemmed from the fear of experiencing the pain of another bleed. I often get dizzy for what seems to be no apparent reason and as for forgetfulness, forget it. If it’s not written down I’m sure to forget it until the deadline has come and gone. I get overwhelmed easily and I believe that directly leads to my lack of motivation.

I guess what I’m trying to say here Chris is that it sounds like normal physiological and emotional reactions to what you’ve been through. By gosh you’ve been through the wringer. But don’t let the current state of symptoms drag you down. I know that is easier said than done. Things will get better. Which ones and to what degree? I don’t know, I don’t even think the Doctors can tell you. But for me the biggest and hardest thing I had to do was accept who I am now. I am still wonderful, I am still smart, I just can’t do as much as I’d like to or as fast as I’d like to do things. It’s all in accepting yourself with these limitations but by no means thinking that you won’t improve.

Don’t push yourself to exhaustion and that might mean that you’ll only have a couple of good hours a day right now and then you have to rest. I know it’s beyond frustrating and maddening. I have no pain medication to help deal with the pain of these horrendous headaches so I’ve come up with a little trick I use on myself, I share it here in hopes it’ll help.

I imagine that my soul is as large as my skin and I concentrate on shrinking it. I imagine that as it is getting smaller and smaller it is taking all the pain and making it smaller and smaller as well. I keep going until it’s about the size of a dime and it’s

oops, I wrote too much… here’s the end of my post. Sorry for being so long-winded.

… size of a dime and it’s at the very center of my being, in my heart. I imagine that once I get it small enough it fits inside of a slightly larger space that I imagine is an iridescent bubble-like-thing. (Like what the good witch of the west in The Wizard of Oz appears in) In this bubble pain doesn’t exist. I’m Christian so I believe that is the same space that Christ occupies in my heart and he takes the pain from me. It works just about every time and I fall asleep.

I hope I’ve helped some and know that we’d all love to hear from you. We’d love to hear all of your gripes and all of your victories, no matter how large or small.

Best regards,

Very well stated, Kimberly! One of the hardest things about this AVM is feeling like half of a person because of all the things I either can’t do or don’t have the energy to do anymore. The most important thing is that we are still alive!!! Let’s start loving ourselves again and keep our “pity parties” to a minimum.

That said, any time you need an understanding shoulder, Chris…we are here for you!

Pam, you are a great friend! I'll send him a message.

Chris (and Pam),

First of all Pam sounds like an awesome friend. That's very good thing to have on this journey. Second, I think Kim said it best when she said "the biggest and hardest thing I had to do was accept who I am now. I am still wonderful, I am still smart, I just can’t do as much as I’d like to or as fast as I’d like to do things. It’s all in accepting yourself with these limitations but by no means thinking that you won’t improve". While all AVM journeys are different, I think this sentiment is global. I wish both of you the very best. :J

Hi Pam!

Like many have said, I am delighted to see Chris have such a good friend in you - you have no idea how vitally important this is to Chris's healing thru this - God Bless YOU!!!

I can relate to each and every one of these feelings that Chris is describing to you and please know that this does get better with time :)! The way that I look at my life now is that this is my "new normal" and I'm starting to enjoy my "new Normal" so much more than I did pre-AVM :)))!!!

You are truly an Angel in Chris's life! Please tell him to hang in there knowing that things will get better for him with each and everyday!

You're such a Blessing!

Hi Pam,

It’s great that Chris has a friend like u! It’s very hard, it’s only been 6months since my surgery, I was also pregnant during my op, I had a healthy boy his name is jack. But yea the last 6months has been tough, like Chris I was getting dizzy all the time and I got a clicking noise in my head for about a month or two but I think It was because of the plates settling down. I don’t hear that anymore. I also have an MRI in April. There not nice. Things are though and I get reminded constantly that I’m here that’s all that matters, yes that’s true but things are hard. I went to rehab for 3months I had to relearn to walk and talk again. My advice yea things are hard but what’s a few months out of ur whole life, and that’s the way we have to look at it :slight_smile: stay positive!

Hi Chris, I feel your pain, my first six months post AVM surgery was very hard, my abilities concentration, short-term memory loss and blindness left me feeling very low (mild depression). With he help of a very good bunch of brain doctors and nurses they began making me believe in myself again, it took a while... i've decided that i am so blessed to be given a second chance by god... I now chase my dreams, I would like to see the world and experience as many cultures before I meet god again... follow your dreams!

Best Regards,