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AVM Survivors Network

I’m baack~!

I am excited to inform that after two years of Physical and occupational therapy, I am finally regaining use of left extremities like how life was before my hemorrhagic that nearly took my life and lead to my embolization that turned me into a left hemiparetic. I’m solely posting this not to show off but because I remember I used to be an avmer without any hope of recovery and now the finish line seems so close ahead!! This too shall pass :slight_smile: now, I am petrified of what my next angiogram might reveal. Now this is just because I’m used to destiny nerfing me out just when things are looking up :confused: I haven’t had any familiar symptoms and last angio my avm was still dead but we’ll just have to wait and see, I suppose… hope everyone has been doing well and sorry for being as active as I usually am!! I just have been really focused on recovery and working hard on PT that I lose track of time and retrieving everything back has become my sole goal in life (as sad as that is). One day at a time till Im out of this messy journey. Thank you to everyone who has kept me sane and answered my concerns and questions upto this point!! It has really meant alot to me knowing I’m not in this fight alone!!

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WOOHOO, good for you!!! Great to hear.
I too used to be up, thinking I was past it all only to come crashing back to earth with a THUD. I have learnt to take my own route, others may have expectations of my recovery, thinking I should be further along than I am. BUT, I’m still moving forward, some of those steps maybe small but they’re still in the right direction. OK so it’s slowly and not at the rate others may have expected, but at least I ain’t going backwards (as I was for a while) and that’s a plus in my book. I still have days when I may over do it and the day after it seems that I’m on a backwards trajectory, but when I sit back and look at things from a long term view, I’m still heading it the direction I want. Having a focus on something like recovery is a really good thing, when I loose that focus I tend to wallow in what I can the ‘Poor me’s’, never good. Onward and upward I say.

Good to hear from you again. You’re doing well, so thumbs up to you
Merl from the Moderator Support Team

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Teiry,

This is fantastic and testament to the hard work you’re putting in!

It’s great to hear that you’ve got some sign of recovery and a great encouragement to others in the same situation. I’m so glad you can see some light at the end of the tunnel!

Keep up the hard work and the positive, fighting attitude.

Very best wishes

Richard

Good job Teiry!
I know it’s hard not to think about the what-ifs but keep working hard and you’ll keep moving forward

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Congratulations Teiry, happy to hear that your health is improving. Sending positive thoughts for your next angio. This avm stuff is a struggle, thanks for sharing your success.

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Thank you so much!! It honestly is a drag of a struggle~!!

Thank you so much Mike!! One day at a time, I suppose. It’s just a weight off my shoulders to not be in a dark state of mind and more of a positive note now:)

:blush: thank you Richard!! It’s just I remember being the complete opposite of optimistic and wanting to obtain some hope from reading of someone at the end or reaching the end of our nightmare, so I thought maybe someone one day might need to read that post.

Oh!! I’m still so scared of that sudden THUD!! I have heard it happens to many or like plateauing… so I try to push past my limits!! But I have already experience the downside to that: I almost threw up during electrode stimulation therapy BUT at least no seizure so it’s ok in my book!!

I completely agree.

I’m so pleased you’re in a better space!

Hey Teiry
“…so I try to push past my limits!!..” PLEASE, PLEASE be VERY careful when doing that. I say this as I did exactly the same thing. I pushed too hard, too soon and to say it exploded in my face would be an understatement. I ended up back in hospital requiring further neurosurgery (No.6).
A simple THUD does not express the outcome adequately as my whole world imploded in on itself (and me). Learning to read those subtle signs when enough is enough is a must. I didn’t learn, I didn’t listen to my own body and only wish I had.

Merl from the Moderator Support Team

I agree with Merl… pushing your limits or at least testing them is a good thing; but once you push too far past it you could damage yourself as I found out I went from I can do this to I’m in the hospital for a couple of days so get up to your limit give it a nudge but don’t get crazy and push too hard past it ;small steps…

No worries I’m listening to my body as we speak :slight_smile: I wouldn’t like to take 5 steps back from the 10 forward that I have already taken. It just irks me that my physical therapist is always like “just let me know when I’ve gone too far or enough is enough” like pfft I won’t be able to tell the difference until I’m in the hospital bed!! No but seriously last session I was finally able to tell what he meant (aside from coming out exhausted I felt nauseous)

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Happy to see someone doing great and being positive. I can totally relate to some things. For me it also seemed to be that whenever I was starting to feel somewhat better some other bad news or experience would come and hit me some more…It’s tough. The quote "this too shall pass " was actually often on my mind…My story is similar to yours. After brain avm operation I was left with Hemiparesis that was more hemiplegia if you ask me :slight_smile:
You’ll be fine, don’t worry just keep doing what you can to recover even more and keep up with that positive attitude and strength. :slight_smile:
Cheers from Croatia!

Well done…that is a major achievement, I salute your perseverance and patience. It’s not an easy task I might say. And it all comes from your own determination and the will to survive. I hope that one day my son will that determination as yours.! IMG_20180308_121936|500x500

Hi Teiry,

I didn’t see your original story until now. My AVM didn’t bleed. But brain surgery for all of us is very unpleasant. And angiograms aren’t exactly like going to parties with friends. One of the best things you have going for you is that you’re very young!

And with todays advanced surgical technologies and therapies you’re in good hands. It seems like you’re focused and determined. You’ll get where you want to be. Just keep working hard. There is long, happy, healthy and active life after AVM.

I’m an outdoors person: hiking, mountain biking, rock climbing, anything outdoors! I remember back in 1993 when I had my surgery. When beginning recovery and OT I thought AVM’s (A)re (V)ery (M)otivating. I needed to get back to my previous life. And did. Be patient. You will too!

We’re here to help. Reach out. I won’t wish you luck. You don’t need it. You’ll be just fine.

Bill

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Hi Teiry,

It’s great to read of your recent progress. I’m three months post the bleed that diagnosed my large occipital AVM and while my bleed had left me with few serious issues it was devastating enough to experience the haemorrhage and learn I had an AVM and all of the risks that I now live with. It is surgically too risky to approach, and I am having radiosurgery TODAY at Sheffield (UK). It’s encouraging to read that your recovery is still ongoing and that there is hope for people who’ve been more severely affected from their AVMs than me. My bleed was miraculously lucky given the location and extent, and I feel grateful for that every day, but I also know that I have five years until hopefully :crossed_fingers: the AVM is obliterated. I’m naturally afraid of further bleeds and more severe damage/outcomes and it’s very encouraging to know that recovery is absolutely possible. Congratulations on your determination and courage and thank you for sharing your experiences here. We can only go forward!!!
Regards
Jonny

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Hi Teiry, great to know that, well done for your perseverance and dedication…hope you heal 100% !! I’ve just started acupuncture as an alternate medicine and hope it helps. Can you tel me what type of PT you were doing ? thanks