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AVM Survivors Network

How is everyone doing so far?

#1

I feel like I haven’t posted in forever and wanted just to read how everyone is doing do far?? My PT seems to upping up my therapy using splints of every sort and now the saebo stim. So far so good, no complaints here!! And waiting for my next round of botox on May 2st. How about y’all??
Hand is still giving me a hard time

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#2

Teiry!

I was thinking of you today because of @Cornishwaves Jo’s post yesterday in which she was telling of her long but constant fight to get better. I enjoyed her determination to get better and that reminded me of you.

For myself, you may know I’ve avoided a bleed, so I am really very well and today was warm enough here (maybe only 11°C but warm in the sun) to spend time outside enjoying the spring and getting some jobs done. So it’s been a great day.

Its lovely to hear from you and I hope you’re still striking out to do your best.

Very best wishes

Richard

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#3

Great to hear from you Teiry, sounds like you’re making some headway which is great to hear. Always enjoy your posts and your outlook is always awesome! I said in a post yesterday, I think, forward is forward and is so true dealing with these things.

I’m looking forward to spring fully arriving, my son was skiing today but think the hill may close. Yes we have some skiing here in Manitoba! I hope everything continues to progress for you. Take Care, John

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#4

You’re so sweet JD!!
You are so right!! Progress is progress, no matter how small :slightly_smiling_face:

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#5

Hahaha I just never give up my dear friend!! I’m hard headed like that!! Something my avm never saw coming lol
I will try everything and anything to get back to the old me :smile:
I totally missed that story by the way!! Congrats!! How did you avoid the bleed?! O:

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#6

Hi Teiry, It’s good to hear your positive words. I have that same stubborn streak as you. After 7 hour craniotomy (2d one, age 14) my parents got the good news from the neurosurgeon, Dr. Collins, Yale, New Haven Hospital, “He’s out of surgery and he’s madder than a wet hen!” That was such welcome news that they love repeating it to this day.
Be well, Greg

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#7

Hi Teiry:

Glad to hear you are doing so well. I think we have all come to far to even consider giving up. We may not be 100% or 25% healed, but we’re still in the fight just like you. I had my second Gamma Knife Radiation procedure on 1/31/18. In 3-years or less, I will find out if the monster is gone. My first GKP took out 50% of the AVM. Hopefully the recent GKP will eradicate the rest. Portions of my scalp is still numb from the procedure, but I can handle that. I can handle just about anything, but … I handle everything at a slower pace than before. So good to hear from you. Let’s keep improving!

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#8

Hi Tiery, I guess Im doing okay to date and living as they say… The battle never ends but life also takes its course… God bless!

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#9

God Bless! It’s good to be here, it’s good to be stable.

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#10

Last week was my year anniversary from a crainiotmy to remove a parietal avm. A few months post-surgery I thought I was great, then came the seizures…then the side effects from the anti-consultants. I think I need to return to PT bc my left hand and arm get numb regularly. Also want to say that I am so grateful for this forum. I identify so much with others on this site who have been struggling and striving to succeed.

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#11

Hi Teiry, it’s been a while since I’ve been here as well.
I’m glad that you are doing well. Hopefully your hand gets better.
I’m well. Trying to work through my depression.

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#12

Great to see you here Leslye, it has been a while since you’ve posted. Thanks for stopping by! Take Care, John.

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