Extremity and Other Non-Brain AVMs


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: 546
Latest Activity: yesterday

Discussion Forum

Left foot has been bleeding profusely.

Started by leela_pip. Last reply by Christina Mullins yesterday. 4 Replies

Limb AVMs (legs and arms)

Started by Samantha. Last reply by quiet_waters Sep 8. 7 Replies

Looking to raise money for AVM research

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

Comment Wall


You need to be a member of Extremity and Other Non-Brain AVMs to add comments!

Comment by dancermom yesterday

I would recommend you leave the same comment in the Spinal AVM group, Christina, so those members have a chance to respond, too.

Comment by dancermom yesterday

Christina, sometimes members express a sense of "unworthiness" when they join, when they see others with more challenges than they have, but please don't feel that way. You have plenty going on, and you should fee comfortable posting about any issues that arise. AVMs are so individual that it is hard to predict how your recovery will be, but I hope some of our members here will share their experiences with you.

Comment by Christina Mullins yesterday
Hello everyone! I am brand new to the site. A little about myself I had a laminectomy in July 2012 to remove a spinal AVM in my spine and to also have an AVF removed. Surgery went well excerpt for a spinal fluid leak I had after I went home which sent me back to the hospital for another week with a drain in my spine. I have tried to research my particular condition, but it is extremely rare. Most spinal AVMs are found in the lower backs of middle aged men, mine was in my neck pretty close to the base of my skull and I am now in my late 30's. I have had a difficult time since my surgery, and after reading so many of your stories about rehab, ruptures, and bleeds I sort of feel like I shouldn't complain and I am not really, but I am just not the same. Right after my surgery they checked my bolls sugar every couple of hours for 4 days they said that rerouting a persons blood flow can change certain things. I am just not the same person that I used to be I have a constant headache. My neck and left shoulder hurt and I have neuropathy as well. I am on Lyrica, Baclofen, and Vicodin. I made the mistake of letting my Cymbalta prescription run out and since I have moved and changed insurance companies I am waiting for my old neurologist to renew my script until my appointment in Nov. with my new neurologist. Sorry to be so long worded but my question is does anyone know if or when things get back to normal for someone like me?
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

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.

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.


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