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: 583
Latest Activity: 8 hours ago

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Comment by Westy 8 hours ago

I was first diagnosed with AVMs in 1993, after having some cut out of my right ankle in 1980. My AVMs stretch from my ankle to just below my knee on the front and side of my lower leg. I have had 9 embolizaitons since 1993 with the last one being in 2006. I am now have renewed pain in my lower leg. The embolization has worked well for periods of time, but, at least, with my leg, either new AVMs are formed or missed ones grow or both and I have in the past chosen to have embolization done. I will likely have it done again, but know I will be in pain for a period of time as I heal. The doc I have used is Wayne Yakes at Swedish Medical Center in Englewood, Colorado, just south of Denver.

Comment by MexiGirl1203 on May 5, 2015 at 10:29am

Hi Aalekh, I had the screlotherapy done on mine numerous times. For me, it helped for a short amount of time, but I had to have it done at least one a year for about 4 years. The compression socks do not help me anymore, I have started to wrap it with an ace bandage to add more compression if I need it. I have an AVM in the same spot you do, but it's right in my achilles' tendon area. I agree about being frustrated with the pain. I went to Stanford and saw a doctor there who wanted to do an arteriogram to possibly "block" the feeder veins. I lost my benefits shortly thereafter, so I was unable to go through with that. Sorry I couldn't be much help, I wish you the best of luck!

Comment by Aalekh Rasal on May 4, 2015 at 10:44pm

Been living with a venous malformation in my left leg around the calf muscle. Was diagnosed initially back in 2009 and was managing it well with compression stockings. Recently, the pain has increased affecting sports and daily activity and compression stockings are not helping. Considering screlotherapy as the next course of treatment.How has the experience been for anyone who has done it? Did it help with getting back to sports/active lifestyle? The intervention radiologist i met here in Toronto (Dr Simmons) was very rude and did not care to listen to my questions or concerns. Any input from this forum would be greatly appreciated as i am beyond frustrated with this pain which has suddenly started out of no where!

Comment by Dom on April 15, 2015 at 9:20am

Linda - Thank you for your candor in sharing so much experience........
Your positive outlook provided a much needed spark to pick myself up, remember EVERY DAY must start and end with prayer /meditation to have acceptance, gratitude, mindfulness, and most importantly faith in this life, otherwise negativity, resentment, self-pity, and hopelessness immediately take over --- happiness is my choice, not a result of circumstances, most of which I have absolutely no control

Thank you so much, your encouragement provided a blessing in my life, and a sign of faith in action
Yourself and your family will be in my prayers

Comment by Tessy123 on April 13, 2015 at 11:31am

Hi - anyone any experience of Peter Rowlands at Liverpool hospital? I am being referred from local hospital. I have vascular malformations through right buttock, and right thigh. Anyone anything similar? Thanks.

Comment by laura jurgens on April 8, 2015 at 11:29pm
Hormones and trauma encourages it to grow, so yes at any time.
Comment by Erin H on April 8, 2015 at 3:28pm

Question for you all: I had 2 AVMs (one in my neck and one in my abdomen) that were treated with ethanol embolizations. When we did scans early on and even at the tail end of those treatments those were the only ones seen. Now I have developed a 1cm "nodule" on my sacrum. It was not in previous scans of the area and because of where it is located it is in a bad spot for a biopsy. Can an AVM just randomly show up later in life? I'm 37.

Comment by JennR on April 8, 2015 at 7:54am

Hi. I'm new to this group and have been wishing for a resource like this most of my life. I was born w/ a small purple "spot" toward the tip of my middle finger of my left hand. A trauma to the finger when I was a toddler caused it to grow. The doctors told my mom anything from a tumor to hemangioma. I grew up having numerous surgeries and doctor's visits. My last surgery was probably about 10 years or so ago thru the Mayo Clinic at the University of MN hospital. The doctor told me that they could not get all of it because the last artery feeding the finger was involved - if they damaged that, the finger would be lost. She also told me that what I have does not spread. Unfortunately, this conversation occurred after I trusted her to do the surgery on me, because I knew better (it had already spread from the tip of my finger, throughout my finger, and down into the palm of my hand (I haven't even been able to wear my wedding ring for several years now because it causes discomfort)). So, I knew she either did not understand what I have or she didn't know what it really was (a respectable doctor, IMO, wouldn't operate under these conditions). I, sadly, didn't either at the time because I was going on the last information my mom had received when I was a teenager (hemangioma). After a lot of looking online on my own, I feel like I may have found a resource with the help, support, and information I need (hopefully).

Comment by LINDA GAYE MILLER on April 7, 2015 at 8:20pm

Thanks for your kind words and support. I let you know more when I learn more. Take care and remember to have fun,

Comment by Debra on April 7, 2015 at 1:38pm

Hi Linda - what a raw, emotional post about what it's like emotionally to have an AVM, which is so different from the physical. Everybody's AVM is different, different diagnosis, different path, different location, different feeders, etc. and perhaps this is what makes it harder for some to come to this site for advice, if you will. May people also stay involved on this site for a time and come back when they need emotional support or make use of the ample resources this site provides. Thank you for your honesty, your emotion, and truly understanding that your decisions are what's right for you. Please let us know what you decide to do for sure, so we can be by your side. All the best Linda:).


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Posted by Danijo on May 28, 2015 at 4:40pm 1 Comment

A year ago we spent our anniversary in the hospital. It was frightening and overwhelming and all I kept thinking of was "I wish we were home, I wish we could sit on the porch, I wish we could be alone."
And today we did just that.

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