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-   -   AVM Right Arm (http://birthmark.org/board/showthread.php?t=1449)

les 06-20-2005 08:22 PM

AVM Right Arm
 
My son has a large AVM on right arm just below elbow. He has had 6 vessels embolised but feels no better albeit that he can walk a little further without getting tired. I am having difficulties persuading his doctor that he feels ill even allowing for a reduction in blood flow and he has had to give up his University Course and hence his desired career. Can any one out there tell me how they felt so I can get a better understanding.

KristieinStMarysGA 06-20-2005 08:41 PM

Re: AVM Right Arm
 
Hi,

Welcome to the boards!

My names is Kristie I am 26 and have an intermusclar VM throughout my left elbow and a little bit of the forearm.
I am under the care of Dr.Wayne Yakes he is in Englewood Colorado. I have had one sclerotherapy treatment, and doing well right now with the aid of a compression sleeve.
What doctor is your son seeing, if you don't mind me asking.. What did they use when he had his embolization? coils?? or the glue?

I know how your son feels about having to give things up, I have been out of work for 6 months+ due to endless dr appts. and my job had enough, I have also fell behind in my course work as well..

You can e-mail me if you have any questions or just to vent isleskristie @ tds.net (no spaces)

Kristie

juliemn 08-12-2005 05:55 AM

Re: AVM Right Arm
 
I know this is a very late reply....but I just caught this post.

With the fatigue that he is feeling...has he seen a cardiologist? Sometimes AVM's of a larger scale can put a lot of stress on the heart/cardiovascular system. When my son was diagnosed with multiple AVM's, the first place they sent him was to a cardiologist for an EKG and ECHO.

Hope he feels better

Julie

crissy 11-29-2005 09:11 AM

Re: AVM Right Arm
 
Since all the treatments my husband has only been able to work a few times in the last 4 months. Luckily his job is working with him so far. He is very depressed though and sees no end to the treatments. He is fatigued, hurts, and very depressed! Did I mention that he is depressed? I don't know what to do for him. I try to work more to help with the bills and his trips to Colorado once a month and he gets worse. Driving me crazy. Being supportive no matter what the depression brings isn't that easy!

Sarah H 12-17-2005 10:42 PM

Re: AVM Right Arm
 
Hi, I cannot believe that I have found a site where there are other people who have the same condition as my 19 year old daughter. I have been searching the web "forever".
My daughter was diagnosed with an AVM at the age of 9 in her right ulna, radius, 5th metacarpal and the surrounding tissue. She currently goes to Mayo Clinic in Rochester Minn. for treatment; we were told that her AVM would stop growing when she went through puberty however that has not been the case. She has continued pain with use of her arm, whenever the weather changes, and when she is under stress. She has had several surgeries to try to remove the AVM, as well as scelerotherapy with none of them helping for any length of time.
Is there any one out there who has a similar experience and has successfull treatment?
We just saw another doctor Wednesay who gave us a pretty grim outlook.
Thanks for any info that you can offer. I'll look forward to a response from someone. Thanks, Sarah

nickbar 12-17-2005 11:51 PM

Re: AVM Right Arm
 
Others can recommend more doctors... but Dr. Yakes came to mind when reading your story... his contact info is on this site... he is in Colorado. I am very confused why the docs would tell you it would stop growing during puperty.

Corinne

Sarah H 12-18-2005 12:06 AM

Re: AVM Right Arm
 
Hi Corine, Thanks for giving me a doctor's name. I don't know why the doctors gave me that info. I had assumed that they knew what they were talking about. The new doctor that we saw on Wednesday had a completely different opinion about its growth and the outcome. His opinion was because of the size of the tumor it's location that the only option other than amputation was a compression garmet (jobst sleeve/glove).

The doctors at Mayo have had a more conservative approach, only treat the symptoms as they occur and wait to see if any new treatments become available.

I will try to get back with you when I have a little bit more time. We are getting ready to go out. Once again, thanks for responding. I am sooooo thankful that there is finally somebody out there that is familiar with what we are goint through. Talk with you later, Sarah

nickbar 12-18-2005 03:42 AM

Re: AVM Right Arm
 
There are also great docs on the East Coast that are very experienced in TREATING avm's

Corinne

Sarah H 12-18-2005 04:04 AM

Re: AVM Right Arm
 
Who are some of the doctors on the East Coast? What has been your experience? Where is your AVM and what things have you had done and how successfull have they been. I think the unknown is the thing that is the scariest. My daughter is a gifted musician and is currently studying to become a band director. The new doctor suggested that she change her focus in college because we cannot expect her AVM to stop its growth and eventually it will become more and more difficult for her to play; however, I feel that there has to be some type of treatment out there that will work and allow her to continue to have use of her arm.

Her two worst symptoms now are basically pain and she has a numbness tingling in her right hand on her little finger side; part of one of her AVM's is close to her ulnar nerve and my personal feeling is that it is compressing on that nerve. If you looked at her arm, other than the scars, I don't think that you could readily tell that she has an AVM.

I'll look forward to hearing from anybody who has had any experiences with AVM's that have occurred in their bones and muscles. Sarah




KristieinStMarysGA 12-18-2005 05:05 PM

Re: AVM Right Arm
 
Hi,

I have a VM throughout the left arm, mostly in the elbow joint and forearm. I am a patient of Dr.Yakes and have had sclerotherapy and wear a compression sleeve. As far as I know sclerotherapy usually takes more than one treatment and doesn't always produce immediate results. Although many people have immediate results. I did but after about 8 weeks or so my symptoms came back letting me know I needed more treatment (which I have yet to get)
Let me know if you have any questions! I know there are some docs in Boston

Good Luck

Kristie


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