Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   AVM Help and Resources (http://birthmark.org/board/forumdisplay.php?f=11)
-   -   Any one with AVM's of the arm and hand? (http://birthmark.org/board/showthread.php?t=2974)

Cinderella22 07-30-2008 04:54 AM

Any one with AVM's of the arm and hand?
 
I'm 30 yrs. old with AVM's of my entire left arm and half of my hand and was wondering if anyone else suffers the same? I e-mailed the asked the experts Dr. Rosen and got a response witin 6 hrs. to my surprise! He wants me to send my MRI disc to him to see if he can help I'm so excited, I'm trying not to get my hopes up too high but I've NEVER had a Dr. that knew what these were. Has anyone been treated by him they say he's great? Thank you and God Bless!

kristi4923 08-16-2008 02:22 AM

I have an AVM in my left elbow and so far it hasn't went any further then my elbow. Luckily it started showing through when I was around 9 and I had multiple surgeries during my youth. As with you, the first few surgeons had no idea what it was. I am now 25 and the pain has returned. Today I had an angiogram and am awaiting the results. My doc mentioned a doctor in Colorado who specializes in AVM. After research I have found his name is Dr. Yakes and has a very high success rate eliminating AVMs. I have not heard about Dr. Rosen. Where is he from? I would like to research my options before making any decision on what to do.

Good luck!

Cinderella22 08-18-2008 04:21 AM

I've heard of Dr. Yakes all over this forum and have from what I've heard he's seemed to have helped countless people. I got Dr. Rosen from the ask the experts page on this website, I sent him an email and he asked that I send him a copy of my MRI disc so I'm waiting for a response. He's in NY., I'm in TN. not sure how I'd manage that one if he could help, I lost my job due to my AVM'S and the health ins. that came along with it. I'm 31 and I've also had multiple surg. it's a shame we didn't have these docs 20 yrs. ago that have all this knowlegde about this. I hope you will keep me updated about your test results. I wish you luck on your research! God Bless!!

Denise P 12-09-2008 12:46 AM

Right Arm AVMS
 
Hi ladies,

I realize this is several months after you have both posted, but I thought I would chime in. I have been under the care of Dr. Yakes in Denver for the past two and a half years ... he is great at what he does and I highly recommend him for treatment! His staff is especially wonderful and he has a special unit and surgical area at Swedish Hospital.

I am 46 and always had what I thought were blood clots in my right arm. At least, that's the best that vascular specialists told me until I had a lump come up in my right forearm about three years ago. I had two surgeries in that area when I was very small (about 2 years old) to excise what they thought was a hematoma. Unfortunately, during both surgeries I nearly bled out on the table, so they warned my parents to never allow anyone to touch that arm for any reason!

Fast forward to just three years ago when the lump began to grow like crazy. Fortunately, an educated vascular surgeon sent me for an MRI and was familiar with AVMs. Although he couldn't treat them, he knew Dr. Yakes very well and referred me.

Since that time, the forearm AVM has been successfully eliminated after two alcohol embolizations. A full arm MRI revealed what Dr. Yakes calls a "monster" in the muscle and boney structure of my elbow. I have had four embolizations on that AVM, but it appears to be growing and I am scheduled for another embolization late next week.

At any rate, I understand the frustration that you both are experiencing and can assure you that Dr. Yakes is the real deal. Feel free to email me if you have any questions or just need a support sister :)

Denise P

AmyG 04-13-2009 03:51 AM

Dr. Rosen
 
I was under the care of Dr. Robert Rosen at the NYU Medical Center from about 1987 thru 2000 for an AVM in my right foot. I had embolizations when they were still considered experimental. I haven't been in contact since and am not sure where he is now, but he was a great doctor! He was able to help me for several years. Good luck!

Canon4487 12-05-2009 11:55 PM

I just stumbled upon this forum when I googled "AVM". I am 22 years old and was treated by Dr. Yakes when I was in 5th-6th grade. I have an avm in my left hand. I went to Swedish Medical Center 8 times during the 2 years. It was very scary my first time there, but once I spoke with the doctor I was a bit at ease and all of the procedures went very well. My avm has caused no problems at all since and I am very glad I had the chance to be treated by Dr. Yakes.

ula 04-15-2010 09:17 PM

Hi Cinderella 22,

I am 25 right now and I have an identical case. My AVM is on my arm and half on my hand.

Can You post what did Dr. Rosen answer?

Heaz 10-15-2010 03:03 PM

Hi everyone. I have an AVM in my right hand. I am also part of another AVM site which has great support for people. http://www.avmsurvivors.org
There is even a group for extremity AVMs. It would be great to hear from anyone in Canada with an AVM in their hand. :)

cadillackitten 05-26-2012 10:04 PM

avm in left arm
 
hello,

i have avm's in my left arm. i have had one surgery already and countless dr visits and tests. the pain in my arm is becoming unbearable and it is affecting my use of the arm. i go to physical therapy to help regain the strength but it doesnt seem to help. i recently moved to mn from las vegas and i am having the hardest time finding a doctor who knows anything about avm's. nobody seems to understand the pain it causes.

i guess i just need someone to talk to who understands these things. :(

NoMorePain 06-18-2012 11:55 PM

I hear you, CadillacKitty!!
 
You are not alone! I completely hear you <3 I had an AVM in my right hand which was ruining my life. There were days I wanted to cut off my arm. My hand would swell up so much that I lost function in three fingers (pinky to middle finger) I am an artist and Graphic Designer and my AVM was in my dominant hand... The pain shot up my arm to my shoulder.... Nothing helped the pain. I was missing work left and right and no one understood the pain I was going through. I was so sick of people comparing my pain to carpal tunnel syndrome. I'm sure you can relate. I went to Dr. Robert Rosen in NYC who performed the fourth embolization at my young age of 26. I felt hopeless. After that procedure was finished, the pain was worse than ever... My hand was full of glue and alcohol from years of poking and prodding by some of the best doctors in NYC... That was until I met Dr. Keith Raskin. Dr. Raskin couldn't promise me that he could restore my fiction and told me that he may even have to amputate part of my hand. He was confiden he could help my current situation though. I went in for surgery to remove the Avm in March 2010. Today I am 100% pain free with full function in my hand. He was able to save my hand that others told me would be amputated. If you can take a trip to NY, I would highly recommend it. I felt hopeless until I met him and his amazing staff. His bedside manner is just as good as his skill. Please email me anytime and let me know how you are doing. I completely understand how frustrating it is to complain of pain that you cannot explain. The intensity and pressure of the pain can be unbearable. If you should ever see Dr. Raskin... Please let me know. It will be the best decision you will ever make. I am no a blogger but I had to sign on to let you know this. Take care and feel better soon!!!!!!!!


All times are GMT. The time now is 02:50 AM.

Powered by vBulletin® Version 3.6.5
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.