Extremity and Other Non-Brain AVMs

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Extremity and Other Non-Brain AVMs

For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!

Location: medical/symptom type groups
Members: 544
Latest Activity: on Friday

Discussion Forum

Looking to raise money for AVM research

Started by Matt1983. Last reply by wandawoman10 Aug 25. 4 Replies

Disability and extremity AVM

Started by Desiree. Last reply by Svetlana Aug 14. 2 Replies

lyphemdema and avms

Started by Samantha. Last reply by Samantha Aug 12. 3 Replies

Comment Wall

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Comment by zaza on August 5, 2014 at 4:13pm

Hi Miriam, I had coloration on my leg as a tween but my AVM started to really change and cause swelling and was diagnosed when I was 14. It is in my left ankle and goes up to my knee but isn't too noticeable on my skin. It was active, moving, growing all through my teens. By the time I was 20 it stopped growing or moving and was very, very stable every year until I was pregnant with my son at 36 when again it was active, moving, swollen and sore. After I stopped breastfeeding my son it was again very stable. It really did react to the growth hormone in my body in those two times but never got to be very painful or stopped me running or skiing or doing anything I would normally do. I did (and do) wear compression stockings most of my waking hours and that helped a lot. I also moved to a cool climate city from a hot one, which also helps. Good luck to you and your daughter. I remember how scary it was to not know exactly what was wrong with my leg.

Comment by Msamberxo on August 5, 2014 at 5:35am
Hi Miriam we all understand your concern and frustration. I have a congenital avm in my right hip deep within the muscle and bone I was not diagnosed until the age of 22 but most of my extreme pain came with puberty and never subsided. Best advice I can give you is find a vascular surgeon and interventional radiologist that you trust and really like and take it from there get 2nd and 3rd opinions if you don't feel right about altreatment advised. Feel free to message me and I will try to ease your fears in any way it can! Hope your daughter is doing well!
Comment by Miriam Espinal (Nayelli's mom) on August 4, 2014 at 10:38pm
Hello everyone. My name is Miriam and I have a 10 year old with an AVM in her left thigh/hip area. She is currently a patient of Dr. Robert Rosen in NYC. She has had a few Embolizations already. I am looking for info on this specific type of AVM as my daughter Nayelli is only 10 and I would appreciate any info. Things like how this will affect her when she goes thru puberty, what can I expect I terms of walking (her leg shifts a little) etc things of that nature. Thank you.
Comment by Alice (Allie) Elaine Mastello on August 2, 2014 at 10:08am
Remembering you in my prayers for sure

Moderator
Comment by dancermom on July 28, 2014 at 8:28pm

Hi, everyone, take a look at Rosario's discussion up above about hip or pelvic avms. Please advise her if you are able to.

Comment by Msamberxo on July 28, 2014 at 7:18am
My avm is in my hip I have nerve damage of the sciatic femoral cutaneous and sapheneous nerves from surgery. I also live with daily pain numbness in my leg and extreme nausea. I know how stressful and hard it can be to get through those bad days so if there is any way I can help I am always willing to share my story and my doctors if it can help in any way! Hope your doing well.

Moderator
Comment by dancermom on July 27, 2014 at 7:01pm

Please take a look at Samantha's discussion about limb avms, and give her some feedback if you can.


Moderator
Comment by dancermom on July 24, 2014 at 7:13am

I imagine the pain is kicking in for you, Lou. I'm sure you are in for some rough days. May they pass swiftly.

Comment by LoulouYorkshire on July 24, 2014 at 7:08am
Good luck Steve. I'm over here recovering from massive surgery, facial avm removal and face restructure. I have no wish to ever go through this again. So I really hope that your procedures go without hitch and you recover swiftly. All the very best

Moderator
Comment by dancermom on July 23, 2014 at 9:51pm

Thanks for letting us know, Steve. We will be thinking of you tomorrow and praying that all goes well.

 
 
 

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26 Years!

Posted by Barbara H. on August 3, 2014 at 10:00am 12 Comments

My life changed 26 years ago today. Most people when they write that sentence...it usually means a marriage or a birth of a child. In my case, I suffered an AVM rupture and lived! Although completely paralyzed on one side...I learned to crawl...sit… Continue

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