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-   -   AVM in hand and arm (http://birthmark.org/board/showthread.php?t=235)

lbellenf 06-28-2003 12:21 AM

AVM in hand and arm
 
My 8 year old daughter has an AVM in her right hand and arm. She has undergone two surgeries and is scheduled for her third the end of July. She has limited use of the hand, very noted swelling from the hand through the forearm, and constant pain which worsens at night or if it's hit. She does not have any of the discoloration that I read is present with most AVMs. The doctor has told us very little about her condition other than he "thinks" it's an AVM and not a VM and that it's rapidly growing, deep, invading the muscle, and extensive with a lot of little "fingers". Her second surgery was a few weeks ago and the doctor believes he removed 1/2 of it. The surgery was 8 hours and the next we are being told will be equally extensive. We are also being told that complete extraction is impossible and she will have regrowth and require multiple surgeries throughout her lifetime. I have been reading about multi-disciplinary clinics like Children's Hospital of Boston, Stanford, and Johns Hopkins that have teams of doctors who specialize in treatment of Vascular Anomalies. I live in TN and no such clinc exists in my state. I looked at the physician resource list but it looks more like doctors that treat hemagiomas and there are no doctors listed in TN. Our current doctor is a Plastic Surgeon on rotation at a Vanderbilt Children's Hospital in TN and he has some experience with AVMs but I don't know how much. He says he is qualified to adequately treat. Am I making a mistake with a Plastic Surgeon and should I be looking at clincis that specialize in Vascular Anomalies? Can anyone tell me which are noted as leaders and which deal with the extremities? Most of what I read is about the neck and head. I don't want to drag my daughter accross the country if she can receive the same treatment here... but I don't know how to answer that question and of course my foremost concern is getting the best treatment to ensure her quality of life is as good as possible.

Lise 06-30-2003 12:55 AM

Re:AVM in hand and arm
 
Dear LesaB,

I'm an adult woman, from Montreal, Canada. Five weeks ago, I had an AVM on my lower lip excised by Dr. Milton Waner, at the Children's Arkansas Hospital (Little Rock) where he heads a Vascular Anomalies Clinic. My tumor was not as extensive as the one you describe: the surgery lasted an hour and a half. Dr. Waner succeeded in taking out most of it, and expects it to recur in about ten years. That's good enough for me. The swelling due to the surgery has not completely receded yet, but it does every day, and I'm so happy because my lip looks normal at last! I used to have people looking at me, children staring... No more!

Since you live in Tennessee, I suggest that you get in touch with Dr. Waner and send him pictures and other medical documents. He is one of the greatest surgeons for this type of tumors. In Montreal, specialists treating vascular anomalies know about him and recommended that I see him. You happen to live not so far.

I can tell you that from the moment I could speak over the phone with Dr. Waner, I felt a great relief about the whole thing. It was on New Year's Eve, he called me in the afternoon from his residence, left a message giving his phone number on our answering machine, and I called him back at this residence, late that night... He had looked at my pictures and my medical record, and was ready to help and to explain. In the following weeks, we had a few more phone conversations.

If you would like to have his address and office phone numbers, I will gladly send them to you.

(As for the plastic surgeon who has performed the surgeries on your daughter, did you check if his name appears in the physicians' list given on this Web site?)

Lise

Gayle 07-27-2003 11:49 AM

Re:AVM in hand and arm
 
I would also recommend that you see Dr. Waner. I just visited his office for my own condition (venous malformation of tongue and cheek) and spoke to many of the parents waiting to be seen by him, I can tell you that he is a miracle worker. His expertise in this field of vascular anomalies is to be applauded. His concern for the lives of his little patients can be seen not only through him but throughout his office staff. He is a great physician with vast knowledge of these conditions. Your child deserves the best of treatments, if there is any way possible get in touch with Dr. Waner. Good Luck in your quest to better your childs life. Sounds like you are a great parent...

Kerri 02-27-2004 06:58 PM

Re:AVM in hand and arm
 
My 7 year old daughter also has an AVM in her hand and arm. We have been to Boston a few times and have had a few laser treatments on the portions on her arm tht are not raised etc.. Went yesterday to see a plastic surgeon who specializes in hand surgery. He seemed confidant that he could take most of it out with surgery, 3 different surgeries total. Not sure what to do. I would love to share pictures, stories with you. We haven't encountered anyone else with this on their arm and hand... Hope to share our experiences. WE live in NH by the way..

muwen98 07-03-2004 11:13 AM

Re:AVM in hand and arm
 
Hi there.
I am 34 female. I have AVM on my left hand ring finger.
I had surgery 2 times since I first found out that finger was "big" or "swell" than others at age 16.
I had my first surgery at age 17. I remember the doctor told us the "solution" was he would "tie" those problem vessles...., You can call it "fail", b/c my finger ends up getting much bigger than ever!
And at age 20, I had another surgery by a plastic surgeon, this surgeon said if I didn't remove those AVM on my ring finger, it will cause my heart failure in early age. Basically this surgeon removed the worst vessle in that finger, and I was asked to wear elastic glove (custom made) as long as possible to prevent AVM growing or come back.
Unfortunately I couldn't keep the glove on all the time, This surgery worked in the first 4-6 years, then later the same finger gets swell again (on a different side of finger). Not only that, the skin on that finger get worse, the finger tip looks like terribly bruise , peeling. it even bleeding 3 times when I was pregnant last year.
I am glad I find lots info from this website, I was told by my primary that surgery is not "needed", but my finger bothers me a lot. I need my hand in good condition to do lots things (hold things, typing,.....), I even find out I have problem to pick up my 17lbs daughter from her crib sometimes,
I guess I will arrange to see to a vascular surgeon soon, I hope my third surgery is the last one!!

Tandy 07-07-2004 11:10 PM

Re:AVM in hand and arm
 
My 5 year old son has a VM on his right hand and arm. It took us a while to figure out what it was. When he was born his right hand looked slightly bruised, they said that it would go away. It never did, but it continued to get worse. We went to a couple of doctors in Dallas, then we were referred to Dr. Wayne Yakes in Denver.

I will tell you -- there is no quick fix. My son has been going almost every 8 weeks since he was 1 1/2 years old. Dr. Yakes uses the embolization treatment. Since his VM is on his hand, it is a very sensitive area. Therefore, they can only inject from 4 to 6 cc at a time. He has had 18 treatments and this last time he had back to back treatments (one one day and one again the next day). They put him completely under and he has an IV. I think Dr. Yakes is great, but it's a slow process. I'm not sure how long my son will have treatments, but I know that it's getting better. At this point, I think we've prevented it from getting larger which is a step. I think eventually, they'll get it. He has also started Occupational Therapy and I think this is really going to help.

I would consider contacting Dr. Yakes. They can counsel you over the phone and you can send pictures or MRIs. We live in the Texas panhandle so it's only about a 8-9 hour drive. Luckily we've been able to go, but it has been financially draining. However, I know there are many others that travel much further.

I wish each and every one of you the best of luck in your treatments. And if there are any other Yake's patients out there, I'd love to correspond with you. Also, any one else receiving the embolization treatments with ethonol alcohol from a different doctor - I'd also be curious of your results. I'm sure many of you want to be sure the treatment you receive is the right one, just as I worry as a parent that I'm doing the right thing for my son. Feel free to email me!

Tonya 07-08-2004 06:14 PM

Re:AVM in hand and arm
 
My daughter is 5 and has avm in her left arm and hand this was found when she was about two weeks old she has seen about 4 doctors before we found a good one at the university of michigan. she has been back and forth to doctors about every 6mnths to monitor it and it is increasing it is working its way down her back and neck area she wears a compressive garment that covers her entire arm hand and fingers . She has had one surgery to remove a mass from the top of her hand and has onother surgery the end off the month to remove two more from her arm she has a difficult time with this she has two older sisters and she doesnt understand why they dont have the same problem she does and ive tried telling her that she is special and that we dont know why she has this and just trying to be supportive but its hard to make her understand when i really dont understand her problem myself . we asked about lazer and her doctor says that hers is to massive and wide spread for lazer and really hasent done anything else except remove the masses she developes he worries about the scars and tell him i would rather her have a scar then this thing sticking out of her arm or hand any other ideas please let me know Thanks

sillymom 07-27-2004 04:58 PM

Re:AVM in hand and arm
 
:D Hello, My name is Candy Rogers. I live in Athens, TN. My son Jake is 3 1/2 years old, and he was born with an AVM of his Right forearm. I know what you are going through, and I have searched for over a year now to find someone that is going through the same thing. We have 2 fabulous doctors at TC Thompson Children's Hospital in Chattanooga. Please contact me.

powerfulgazelle 08-05-2004 07:34 PM

Re:AVM in hand and arm
 
Hello,

You did not mention where in TN you are....so not sure if this might be helpful to you. I live in Cincinnati, OH...our 16 month old daughter has a vascular malformation of her right leg....we don't have a definite dx yet....she has an app't later in Aug. to have her evaluated at Cincinnati Children's Hospital's Hemngioma and Vascular Malformation Clinic. I have corresponded with another mom of a 16 month old with Klippel-Trenaunay syndrome whose daughter is seen by the physicians at this clinic and she reported that she was very pleased with the care. I'll let you know how things go when Mimi is seen.

Take care,
Christine (mom to Mimi, 16 mos, with vascular malformation R leg)

Tigger 01-30-2005 04:08 AM

Re: AVM in hand and arm
 
Hi, my 11 year old son has an AVM on the bottom of his foot. Some doctors that we have been dealing with specialize in hand and arm AVMs. Their names are Jennifer Marler at Children's hosp in Cincinnati Ohio and Joe Upton at Children's Hosp Boston. Our experience has been very frustrating because very few doctors specialize in the treatment of extremety AVM's. There is also not a lot of case history for them to reference. Good Luck!


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