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-   -   Do I have an AVM? left hand pic attached (http://birthmark.org/board/showthread.php?t=3720)

ericinfo 03-07-2010 12:04 AM

Do I have an AVM? left hand pic attached
 
The doctor i went to thought is was a hemangioma. I don't think so now that I'm reading more.

For all I know it's some kind of AVM or some veins. My family never really explained.

I am pleasantly surprised to actually find somewhere on the Internet to share my individual experience with whatever it is I have with professionals and others affected by them.

I am a 39 year old male, and I've lived with the hemangioma in the pic below since child birth. My mother used to always tell me it was nothing and that it was just cosmetic.

A few years back it started to get a lot bigger, I suppose that just came with me getting a little older.

I went to see my primary care physician back in 2004 or something and he scared me so bad with the suggested procedures that I never went back at all. (I'm one of those people who suffers from SEVERE HOSPITALITIS". I would literally pass out on the floor from the procedure he suggested I go through.

As of late, I am wondering if the hemangioma/veins above the surface of skin they need to be under is affecting anything else in my body. It hurts sometimes.

I am on an HMO and I now have a different primary care physician. From my experience so far, none of them understand anything about it. One was even supposed to refer me to a specialist, but never did. You're kind of treated like cattle when you're in an HMO anyhow, so no surprise there.

I guess my question is what can I do about this? Is there some easy kind of injections or some surgery where they can just numb me up and yank them out? I don't really care to even try to face some of the tests that they wanted me to go through. It seemed like they were really doing it to make more money, as the place I went to is famous anyhow for giving unecessary tests and all sorts of other gouging practices to make extra money.

Maybe I can give it another shot. I just have no idea what to expect and I'm hospital terrified already.

:mad:



Well, thank you for having a read. I appreciate it.

Eric

missy 03-07-2010 12:22 PM

I replied to your other thread!

But I forgot to say hi and welcome!

Missy

nickbar 03-08-2010 08:11 PM

Hello,

Yes, there is something that can be done and insurance should pay for it. Please feel free to email me anytime. I would like to suggest you contact Dr. Fishman in Boston. You can email him thru ask the expert or email me and I will provide you with the contact information to have this reviewed in their weekly case reviews.

xrox 03-09-2010 06:04 PM

Quote:

Originally Posted by ericinfo (Post 18622)
The doctor i went to thought is was a hemangioma. I don't think so now that I'm reading more.

According to a lot of the current medical journals there is no such thing as an adult hemangioma. I am no doctor but the swelling on your hand looks like a "Venous Malformation". If the swelling is soft, compressible, bluish in color and does not have a pulse or thrill to then it is most likely a venous malformation. If the swelling has a pulse or thrill to it then it may be an AVM.

If you are looking for treatment you must first get a firm diagnosis of what it is and that means seeing an experienced vascular specialist. Emphasis on "experienced". There are a lot of resources on this website and a lot of members who can help you along the way.

Also, an MRI can tell you just how extensive the malformation is under the skin, in the muscle, or in the bone. I am very glad to hear you are mostly symptom free. This is usually good news regarding the seriousness of the malformation.

If your malformation turns out to be superficial (skin only) then you have an excellent chance at a successful outcome from treatment (either surgical or sclerotherapy). Or you may choose to do nothing until you become more symptomatic.

Take Care

ericinfo 03-09-2010 06:23 PM

Quote:

Originally Posted by xrox (Post 18646)
According to a lot of the current medical journals there is no such thing as an adult hemangioma. I am no doctor but the swelling on your hand looks like a "Venous Malformation". If the swelling is soft, compressible, bluish in color and does not have a pulse or thrill to then it is most likely a venous malformation. If the swelling has a pulse or thrill to it then it may be an AVM.

If you are looking for treatment you must first get a firm diagnosis of what it is and that means seeing an experienced vascular specialist. Emphasis on "experienced". There are a lot of resources on this website and a lot of members who can help you along the way.

Also, an MRI can tell you just how extensive the malformation is under the skin, in the muscle, or in the bone. I am very glad to hear you are mostly symptom free. This is usually good news regarding the seriousness of the malformation.

If your malformation turns out to be superficial (skin only) then you have an excellent chance at a successful outcome from treatment (either surgical or sclerotherapy). Or you may choose to do nothing until you become more symptomatic.

Take Care

thank you so much for taking the time to reply to my posts.

yes, i was told this week that it is in fact a venous malformation. there is no pulse. it doesn't give me much pain or anything, and its unsightly though.

i hope the doctor i sent email to here replies to me, as he sees mostly babies.

:)

thank you again.

missy 03-09-2010 08:41 PM

Yeah.... he's also in NY right now, I think. But he will help you all he can!

Let us know how things go.... I'd love to find out what your options are in this case.

Missy

xrox 03-11-2010 02:07 PM

Quote:

Originally Posted by ericinfo (Post 18648)
thank you so much for taking the time to reply to my posts.

yes, i was told this week that it is in fact a venous malformation. there is no pulse. it doesn't give me much pain or anything, and its unsightly though.

i hope the doctor i sent email to here replies to me, as he sees mostly babies.

:)

thank you again.

My daughter has a very similar venous malformation on her foot except hers is right through the thickness of her foot. There are many options for treatment.

1 - Surgical resection
2 - Sclerotherapy
3 - Combination of 1 and 2
4 - Do nothing (take pain medication)

I would avoid #1 at all costs unless the VM is purely superficial and easily removed. Otherwise the VM will return even worse than before.

#2 has several options but the most effective chemicals to use are

1 - Ethanol
2 - Foam STS, Poly (safest of all three)
3 - Bleomycin

Sclerotherapy is essentially burning the vein from the inside. Just like any burn there is pain ans swelling and scar tissue. Even boiling water was once used for sclerotherapy.

Take Care

sens71010 03-15-2010 10:59 PM

How interesting! I suppose your hand looks like what my tongue would look like if not in my month...if that makes any sense! My tongue is puffy and deep purple. Probably because tongue skin is thinner...

I hope you have good luck with treatment. Honestly I can say that if it bothers you now, even if just because of the look, it will bother you more when it complicates. Treat it NOW! Don't say next year, don't say when it hurts. Because when it hurts, it may be unbearable (like mine was) and you can't just call up then and beg someone to help you!

Good luck!

June23rd2010 03-21-2010 04:59 AM

My left foot, leg, hip, lower back and various other areas look like that and my doctor told me it was Servelle Martorell Syndrome. I see Dr. Driscoll and Dr. Gloviczki at the Mayo Clinic in Rochester. I live in Texas so I don't see them very often but I am having an amputation of my left leg done by them in June.

ula 04-15-2010 08:12 PM

hi!

I have very similar malformations in my hand and arm. Mine were not qualified for sclerotherapy. I had some surgical resections in my life. My arm looks a bit better (instead of huge blue spot, some smaller and huge scar). And I am still unable to do any hard work using my arm. Therefore I sometimes ask myself if this operations had any sense?

Honestly I dont know if this kind of tratment really helps. In my case whole arm has VM, so removing some of them causes, that others are filling with blood and are visible as blue spots on my skin.

If in your case this happens in a "limited area". If this is a problem of only few capillares than you can have the sclerotherapy.

I would appreciate if You could share here the informations you get from doctors you are visiting. I live in Europe and have heard, you have better specialists. Maybe one day there will be some great new medicine available. I would like not to miss it.


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