treatment or not? - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > AVM Help > AVM Help and Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 04-14-2005, 10:20 PM
kbryce
 
Posts: n/a
Default treatment or not?

I have been trying to research AVMs and the treatment options and stubbled upon this website.* I, like so many of you, am sad to see that so many of you struggle with this problem, but I am glad to have someone to talk to.
I am 24 years old and was diagnosed when I was 2 years old with 2 AVMs on my left thigh, just above my knee.* They are quite large but thankfully only in the fatty tissue and do no involve any muscle.* I have had them emoblized before which significantly reduced the size, pain etc.* In the past few years the pain has come back.* I am still able to do most of my normal activity but sometime I experience severe pain.* My husband and I are also planning to start a family in the next couple of years.* We are concerned how pregnancy might effect the AVM and how the AVM might affect my pregnancy.* Because of this I went back to my doctor at UCLA who told me she would like to see both of the AVMs removed completely.* She said she would like to do another embolization and then have a Plastic Surgeon extract the AVM.* I went for a consilation with the Plastic Surgeon who told me he can most likely remove all of the AVM but he can not guarentee the pain would go away.* He said I will have a lot of scar tissue and therefore, residual pain.* He also said that most likely the skin on my leg from where he removes the AVM would die and he would have to take skin from another part of my body to replace it, making a skin flap.
I am very nervous about all of this.* Idealy I would love to have the AVM removed and be done with this whole thing.* However I do not want to go through all of this and not be ridding myself of the pain.* I am also skeptical about the skin flap.*
Has anyone had their AVM removed completely?* If so, was there alot of residual pain?* Has anyone been pregnant with an AVM?
If anyone has any thoughts or information on any of this I would greatly appreciate your imput.* Thank you!
Reply With Quote
  #2  
Old 04-14-2005, 11:38 PM
KristieinStMarysGA KristieinStMarysGA is offline
Senior Member
 
Join Date: Feb 2005
Location: St Marys GA
Posts: 130
Default Re: treatment or not?

HI
My name is Kristie I am 26 and have vm in my left arm from elbow-wrist/hand, it's in the muscle but no artery involvement. I am going in May to see Dr Wayme Yakes in CO, maybe you can see how setting up a consult with him from what I hear he is one of the best if not the best. His name is on the find a doctor page

Kristie
Reply With Quote
  #3  
Old 04-20-2005, 11:08 PM
maryditz
 
Posts: n/a
Default Re: treatment or not?

hi. I also have an avm in my thigh but also in my hip,pelvis and back. It is very extensive. Ive had embolizations for about 19 yrs now. I was born with this disorder and only found out about it after my first pregnancy. The increased blood flow I had while pregnat irritated my avm and made it grow.Thankfully god blessed me with a healthy son even though I had a high risk pregnancy. With aggressive surgeries my dr got the avm undercontrol long enough for me to have one more child. It took a toll on my body and Im unable to have more children buut Im very thankfull for the gifts i have. My avm grew again with my pregnancy and I had alot more embolizations afterward but fely it was worth it. It is a fact that your avm will react with your hormones. I was basically bed ridden with each period. My drs sent me to a plastic surgeon who said he wanted to remove my leg from above the hip down, but there was no gurantee that they could get all of the avm, so opted to go on the way I am instead of losing my leg and still have to deal with the pain and growth of the avm. That of course was my personal choice. Im still able to get around with my children and choose to wait until it becomes life threatening before I make such a descion. I wish you all the luck in the world, I know how precious a gift it is to have a child, maybe you can ask your dr if he could embolize as much as possible and give you a chance to have a child with out going such evasive surgery. My avm is still growing and it is my muscle tissue, Ive had a hysterectomy to help slow it down and cut down on the pain I was in monthly. Never be afraid to ask questions, this will effect your whole life and you want to make sure you are ready for it. If you would like to contact me, please feel free.
Reply With Quote
  #4  
Old 04-28-2005, 12:06 AM
kbryce
 
Posts: n/a
Default Re: treatment or not?

Thank you so much for all the information, especially regarding pregnancy. That is my biggest concern. My doctor does want to embolize again first and cut off all the blood flow to the avm and then remove it completely. I am leaning toward having the procedure. I think that in the long run I will be better off for myself as well as for my children, when that time comes. However, I do feel I should get a second opinion before I do so, to make sure that I am getting the best treatment.
Best of luck to you and Thank you once again. You have been a great help!
Reply With Quote
  #5  
Old 04-28-2005, 01:35 AM
KristieinStMarysGA KristieinStMarysGA is offline
Senior Member
 
Join Date: Feb 2005
Location: St Marys GA
Posts: 130
Default Re: treatment or not?

Have you seen Dr.Yakes??
If you haven't I would see about getting an opinon from him

Good Luck
Kristie
Reply With Quote
  #6  
Old 05-09-2005, 09:45 PM
mikethepainter
 
Posts: n/a
Default Re: treatment or not?

Before you let anyone amputate anything, go see Doctor Yakes. I have seen about 20 different doctors that had either no idea what to do with my AVM or told me nothing could be done. Someone considered to be one of the best interventional radiologists in the country told me that there was no one on the planet that could cure my AVM. Dr. Yakes looked at it and told me that not only could he do it, but he had already treated many similar to mine before (and many much worse.) If nothing else at least Dr. Yakes is willing to treat you 80 times if he has to. Other doctors seem to have an all or nothing approach that could be disasterous. (Some psychologists consider "goal-oriented" behavior to be unhealthy in a relationship.)
I just had my first treatment with Dr. Yakes last week. Now is not a good time to ask me about results, however I am very optimistic and he does have a record of low complication and high success rates. Get an appointment or call his office and ask for their patient information package. You will likely hear a completely different story from him than you have heard from any other doctor.
Reply With Quote
  #7  
Old 05-09-2005, 11:42 PM
KristieinStMarysGA KristieinStMarysGA is offline
Senior Member
 
Join Date: Feb 2005
Location: St Marys GA
Posts: 130
Default Re: treatment or not?

Mike,

How did your treatment go? I sent you a private message also, as I will be seeing Dr.Yakes in about 2 weeks or so...


Kristie
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Other PWS treatment sweden Port Wine Stain Help and Resources 3 10-28-2006 09:19 PM
f/u from my hubby's first treatment and 2nd treatment beth216 Port Wine Stain Help and Resources 2 07-13-2006 02:55 AM
After Laser Treatment - Should I be worried or could this be normal? somuchmoretome Port Wine Stain Help and Resources 2 06-15-2006 08:04 AM
Laser treatment hankbartenbach Port Wine Stain Help and Resources 48 11-19-2005 09:07 PM
Exercise effect Laser treatment? Tone Port Wine Stain Help and Resources 2 09-09-2005 03:04 PM