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Comment by Dan Wilhelmus on February 5, 2012 at 3:35pm

I agree whole heartedly. The radiologists understand this better than anyone.

Comment by Amanda O' on February 5, 2012 at 10:55am

I've actually had more luck with interventional radiologists than vascular surgeons.

Comment by Leslie A McDonough on January 19, 2012 at 6:41am

Hi jlizotte - I don't know how far you are in N Maine but I travel from Indianapolis to go to Mass General Hosp in Boston. Dr. Michael Watkins is wonderful and either he can help you or possibly direct you to somoneone who can. I have an AVM running off my left Iliac artery and he is the Doc who oversees my procedures & progress. Was there just last week for my yearly check. Good to go for another year. Also, prayer is my first go to. Don't know what I would do without HIM.

Comment by lesley on January 19, 2012 at 3:45am

You are not the only one on the planet. I had a 4.5cm AVM in my right elbow in 2011. It was found in 2010. I went to one doctor and he was supposed to be a vascular surgeon and he told me he could do nothing. I was very lucky. I found a second surgeon and he operated in June and I have about 80% use of the arm. Considering I could barely move the arm or sleep it was just wonderful. The AVM was pulsating above the skin. The surgeon warned me that yes I could lose the arm but he said I could also bleed out and that was worse. This avm was also sitting about 5mm away from the median nerve. Yes my arm is numb to a certain extent but I can still use it and it is still there. Chin up there are lots of surgeons who have never heard of Avms and my aim in life is to educate them. I also have a rare disease and most doctors don't know about that either so I am teaching them about that as well. Before I retired I was an elementary teacher but now I am teaching doctors.

Comment by jlizotte on January 17, 2012 at 7:35pm

Greetings everyone. I have three AVMs in my left arm - one in the shoulder, one in the elbow, and one in the wrist. The one in my wrist had to be worked on for the first time four years ago. I had developed a painful fistula that over time developed two aneurysms. I nearly lost my hand. This was when the AVM was properly diagnosed. There is only one surgeon in Maine who will work on me. Surgery is my only option. The AVM in my wrist pulsates and the surgeon said that because of the specific type of AVM, it will continue to grow and cause more and more damage, and can never be completely removed. I fear that one day I will lose my hand. I have had two surgeries now, but after recovering from the second one (All 50something stitches), I have no relief. The surgeon isn't surprised. There is signifigant nerve damage, terrible swelling, numbness, and pain like nothing else. I feel like I am the only person on the planet who has to deal with this. I live way up in Northern Maine and even the doctors and some of the surgeons at the local hospitals up here have never heard of an AVM. Oye!

Comment by stella on January 5, 2012 at 11:41am

Hi Shalon came on here to bless your page and we love you

Comment by Deb C. on December 29, 2011 at 1:28pm

Hi momsAdvocate,

I did some poking around on this site to see if there was anyone else with a neck AVM in Michigan. I didn't find an exact match on this site, but there was someone from Michigan on this site that went to the University of Michigan to have treatment for his AVM. I then went to U of M Health Services website to see if I could find anything. The closest thing I could find is the Venous Health Program. There is a sentence on the webpage that says, "Patients with arterial venous malformations are referred to the University of Michigan AVM Plastic Surgery Center." I couldn't find any specific information for that center, however. There was a toll-free number on the Venous Health Program webpage. The number is (888) 287-1082. Hope they can help your mother.

Take care,
Debbie

Comment by momsAdvocate on December 29, 2011 at 12:59pm

Thank you VERY much Keith and Jaz. While neither of these are close for us, it sure looks like their level of competence is top notch and perfect for avm of the neck.

She has been taking a baby aspirin every day for at least 3 yrs, and on Evista even longer, nearing a decade. Her GP has not mentioned d/c'ing either of these, but I suspect they may be a significant part of the problem. I'm still trying to sort that out ... the difference between a potential clot or excess bleeding with aspirin for example. As it is now, she's choking and nearly drowning in fluid/blood? constantly. I know it takes platelets 5 days to form...

Any input/knowledge/speculation/experience would be very much welcomed.

Every time we attempt to have a conversation, I just cringe at the sounds... it breaks my heart and I know she needs help soon, but if something as simple as a med adjustment would make a difference while waiting it would be a shame to suffer needlessly.

Comment by Jaz G. on December 24, 2011 at 1:56pm

Hi momsAdvocate,
I would recommend a consultation with Dr. James Suen in Little Rock (director at UAMS and Arkansas Children's) http://www.otolaryngology.uams.edu/vascular/docs/suen.html
I can also vouch for Dr. Waner(On Keith R.'s link) who was trained by Dr. Suen.
My prayers and heart are with you as you gather the information you need to make the best decision for your mother. It is crucial that you find a doctor who specializes and has lots of experience with AVMs but there are some great ones out there. You've come to the right place for suggestions. A lot of people have their doctors on their profile pages, etc. and mention them in posts as well.

Hope this helps and feel free to send me a message with any questions.

Blessings,

Jaz

Comment by Keith R. on December 23, 2011 at 9:38pm

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