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-   -   Having problems w/ AVM on left arm (http://birthmark.org/board/showthread.php?t=3029)

amoore 09-27-2008 03:59 PM

Having problems w/ AVM on left arm
 
Hi everyone! I have had my AVM since birth but did not start having problems with it until I was about 13. Around the age of 16 I had alcohol injections in several different places in my arm and it really worked. I had no pain or swelling for years and it actually made it appear lighter in color. Well I am 23 now and started having problems again when I started taking birth control pills. I believe it happened because of the progesterone that can cause blood clots but I cant find a doctor that has any answers! I stopped taking the pills and the swelling started to go down and then I became pregnant! Now the swelling and pain is back. I found out that when you are pregnant you produce natural progesterone and levels just get higher the farther along you are. If anyone has expierienced this or has any suggestions, I would love to hear back from you. Thanks for listening.

KristieinStMarysGA 09-28-2008 01:42 PM

I feel your pain (literally too!)

My doctor told me that pregnancy, menstrual cycles, and the pill can all cause changes to my VM. I was prescribed the pill for some ovarian cysts and was told by my VM doctor (Yakes) not to take them as it would cause problems with my arm.

What I found helpful is swimming, Linda Shannon recommended it to me and I now go at least 3 times a week. The difference is amazing, if I miss a week I feel it.

HTH
Kristie




Quote:

Originally Posted by amoore (Post 15649)
Hi everyone! I have had my AVM since birth but did not start having problems with it until I was about 13. Around the age of 16 I had alcohol injections in several different places in my arm and it really worked. I had no pain or swelling for years and it actually made it appear lighter in color. Well I am 23 now and started having problems again when I started taking birth control pills. I believe it happened because of the progesterone that can cause blood clots but I cant find a doctor that has any answers! I stopped taking the pills and the swelling started to go down and then I became pregnant! Now the swelling and pain is back. I found out that when you are pregnant you produce natural progesterone and levels just get higher the farther along you are. If anyone has expierienced this or has any suggestions, I would love to hear back from you. Thanks for listening.


Donovan 09-29-2008 02:19 AM

My 18 year old daughter has an AVM of her hand. She was told never to take birth control pills as it would affect her. Hormones make it worse and that is why there is noticable growth during puberty. She always seems to have more pain during her monthly cycle as well. Do you still see a Vascular specialist? I know that if my daughter ever becomes pregnant, then she will be monitored carefully by the Vascular specialist that is looking after her now. Good luck. I hope that you don't experience too many problems.
Liz.

amoore 09-29-2008 03:19 PM

[quote=KristieinStMarysGA;15650]I feel your pain (literally too!)

Thank you for the advice! I always thought that swimming would make my arm hurt worse but I will give it a try.

amoore 09-29-2008 03:24 PM

I have only seen one vascular specialist and that was when I was 15. No one has ever really told me much about it. I really want to see someone because it is just getting worse every day but I normally dont have insurance and the only insurance I have right now is medicaid for pregnancy. It will cover everything I need but the problem is finding someone that accepts it.

KristieinStMarysGA 09-30-2008 01:34 PM

Quote:

Originally Posted by amoore (Post 15653)
I have only seen one vascular specialist and that was when I was 15. No one has ever really told me much about it. I really want to see someone because it is just getting worse every day but I normally dont have insurance and the only insurance I have right now is medicaid for pregnancy. It will cover everything I need but the problem is finding someone that accepts it.

Where are you located?

My doctor is Wayne Yakes in Colorado and he is fantastic!! Try the find a doctor page and I bet someone will be willing to work with Medicaid.

Good Luck!!

amoore 10-01-2008 01:11 PM

In the middle of nowhere
 
I live in Kerrville Tx. There are no doctors around me but I am trying to find a doctor in San Antonio or Austin.

Denise P 12-09-2008 12:06 AM

It's worse every month
 
Hi ladies,

Just wanted to offer my experiences as a 46-year old woman. I had a VM in my right forearm and an extensive AVM that has invaded the boney structure of my elbow and the surrounding muscle. However, I didn't know about either of these problems until about three years when the pain became almost unbearable at times and the VM became large and ugly. At that time, I was able to begin working with Dr. Yakes in Denver.

The forearm VM was successfully eliminated with two alcohol embolizations, but the elbow AVM is so big that Dr. Yakes refers to it as a "monster". I've had four embolizations and am scheduled for my next surgery in about 10 days.

My arm hurts much more every month when I am a few days away from my period. My hand swells and the arm aches worse than at any other time. Dr. Yakes has said that research shows a connection between hormones and pain, but the medical field hasn't found any way to relieve the pain. So ..... I no longer have to use the calendar to know when my "friend" is making a visit ... my arm lets me know.

Best wishes to all of you for the journey.

Denise P

lesa2603 02-09-2011 04:15 PM

hi my 16 yr old daughter as a cerebral proliferative angiopathy avm anyone out there heard of it?????


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