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: 648
Latest Activity: 5 hours ago

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Comment by Mychal 5 hours ago

Hello Jasucude,
Sorry to hear of your husband's leg and foot AVM. I have an AVM in my left foot that started in the plantar region and has grown to include most of my heel and seems to be slowly moving forward in the general area of the ball of my foot. I can't comment on UT Southwestern. I have no knowledge or experience with that Med Center. I have spent time over the last six months visiting with Interventional Radiologists here in western Colorado and at U of Colorado Med Center in the Denver area. Interventional Radiologists are most likely to be involved in suggesting treatment options to the two of you. The radiologists we met with focused on treatment options intended to kill the Nidus of the AVM, which in turn would stop the AVM from growing. It is important that you learn what you can about interventions to hamper or destroy the AVM. It is also very important to understand any potential collateral damage caused by treatments of AVM's to nerves, blood vessels, skin and other foot and leg components. Many of us are treated and experience varying degrees of success at slowing the growth or eliminating the AVM. Unfortunately nerve and other damage incurred in the treatment process have left several AVM survivors with moderate to severe ongoing pain. You might explore posts made by foot and leg AVMers by using the search box on the top right corner of the AVM website homepage. Be sure to ask your doctors questions about treatment options and potential complications or residual pain post treatment. Best of luck to you both...

Comment by jasucude 16 hours ago

Hello everyone. Very new to AVM. My husband was just diagnosed with one in his tibia. This is 12.5 cm. Growing through his tibia bone. It is attached to an artery. He has another smaller one in his plantar region of the foot. We will be scheduled for appointments at UT Southwestern in Dallas. From all that I have read this is a pretty rare form of the AVM. I have read where the gamma knife cannot be used in the legs, He only has pain when his leg is stressed such as in pushing a mower, carrying heavy boxes, lifting weights, squatting. I have read so many horror stories about pain related to treatment or sores forming that we are wondering if treatment is the right direction. Treatment vs. bleeding. His last two blood test show he is anemic and the thought is he may already be bleeding. We don't know what to do and quite frankly are in a bit of a shock. Does anyone have the tibia issue? Any thoughts on treatment and UT Southwestern?

Comment by eileen on July 12, 2016 at 8:21pm

Please check my post "Odyssey" under the Treatment discussion. I thought I would be able to co-post under "extremities" as well.

Will pick up on that to'ow. 'Tis a summary of events since Jan 2016. I hope it is helpful to Extrmities group. Mod Debra will help me transfer it.

Comment by Krabo on July 11, 2016 at 1:23am

Hi everyone,

My first schlerotherapy session for my venous malformation is booked for the 21st of July. Kind of freaking out about the treatment and loss of nerve control potentially. Does anyone have any advice? Thank you.

Comment by eileen on July 1, 2016 at 5:11pm

dzw7; "jackpot" indeed! (I like your spunky positive attitude) No pregnancies for males! We females usually report a worsening of symptoms with pregnancy.

All the best.

Comment by dzw7 on July 1, 2016 at 11:27am

Hello Everyone...

Found this site some time ago after being diagnosed with a pelvic AVM. Apparently I won the "jackpot" as I am a male and I understand this is rare.

It was found incidentally when I was dealing with another health issue. I demanded a CT and they found the AVM. I actually did not understand the seriousness as my kids continued to walk on my back and jump on me. Other things came up which seemed more pressing.

As they resolved, I decided to follow up with an interventional radiologist who was surprised by the size of the AVM (5+ cm?). Fast forward to 8 weeks ago when I was treated...

They used some sort of foam, plugs and a glue like embolic agent. I was on the table for quite some time and should have asked for more pain medication, but lesson learned. As the Dr. Finished up, I heard him exclaim "fantastic."

At my 6 week follow up, he was smiling from ear to ear. Absolutely no blood flow in the region...come back in six months. It looks like (for now) a complete success on the first try.

Why am I sharing? I appreciated seeing other people here moving on with life when I got the diagnosis. I was able to keep it together and work even though on rough days it seemed like a ticking time bomb.

And I want to tell others in a similar position what happened so that they will be hopeful. He was very guarded and frankly pessimistic at first and now the Dr. is patting himself on the back and discussing a publication.

There is hope. And even if something comes back, they will try again.

God Bless

Comment by jam on June 28, 2016 at 8:45am

My daughter has a appointment at UT southwestern in Dallas on July 6 and we will see what they think... Pray for good news..

Comment by LionLady on June 27, 2016 at 9:19pm

Hi Andi, Welcome to the group. I have an AVM on my thigh/pelvic area and have had it since birth. I am now 58. I have just started getting my AVM treated by an outstanding pediatric intervention radiologist, Patricia Burrows. I found her on this site. People travel from all over the country to see her. She responds to e-mails quickly.

Comment by LionLady on June 27, 2016 at 9:13pm

Comment by eileen on June 27, 2016 at 9:05pm

Some ENT surgeons. have experience with AVMs as well as cancers.

 

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