Radiation Treatment

[sprtsgrl72]

Does anyone have any info. or experience on Radiation treatment for low-flow VM's? I would really appreciate any info. that anyone could add. I met with a Radiation dr today and he thinks it will help to scar over the veins that are deep in my thigh. I have not seen much research on this as a treatment for VM's. He is going to review all my films with my radiologist that did my 3sclerotherapy treatments and also get his opinion. Basically, sclerotherapy has not helped at all, surgery is not an option, and this is the next potential solution that has been referred to me since I am in constant pain. He said the dose is much less than for cancer patients and it would be localized. It would probably be 3 - 3 1/2 weeks of treatment, 5 days a week. He said the side effects would be minimal, since it is a low dose and localized. The biggest disappointment was that he said it could take 6 months to 1 1/2 years for the pain to start to decrease. or to see if it worked. He said the process takes a while to scar down the veins.

Any experiences or expert opinions would be very helpful as I make this decision.

Thank you,
Kim

[missy]

I haven't heard much about this, but I'll see if I can track down some information for you.

Keep us posted, though!

Missy

[missy]

I have asked for some resources for this and I will get back to you when I have some info!

Missy

[sprtsgrl72]

Missy,

Thank you so much for your help, I would appreciate any additional opinion I can get!

Thanks,
Kim

[missy]

Well, this is what I got back:

Please post this:

I verified this information with Dr. Waner and Dr. Rosen. Radiation is absolutely NOT acceptable for treatment of any vascular lesion. NONE.

Linda Rozell-Shannon
President/Founder
Vascular Birthmarks Foundation

Missy

[sprtsgrl72]

Hi Missy,

I'm glad I checked this board tonight, thank you for the follow-up. I had spoken to my dr today and he had spoken to a radiologist and reviewed my films and he is ready to proceed with radiation. They scheduled me for a bone scan on weds. to compare with the MRI to see which area to treat. Now I am amazed at the feedback you have given me. I wish I knew the reasoning. This dr said it would scar down the veins. I will have to provide this feedback to my drs and see what happens. I am really upset because I was hoping it would be a solution for my pain, that noone else seems to be able to help me with.

Thanks so much for your help and follow-up,
Kim

[missy]

Kim,

I know... I hated to post it! I don't know that I've ever heard of radiation being used.

Why not ask Dr. Rosen?
http://birthmark.org/experts.php and see if he can explain the consequences?

Missy

[missy]

Also, I have asked for some clarification, so I will post again when I hear back.

Missy

[sprtsgrl72]

Missy,

Thanks so much for your follow-up. I forwarded the feedback to my radiation dr and the dr that did my schlerotherapy. Obviously, I am going to hold off on the radiation until I get further conclusions. The radiation dr seems interested in helping and I sent him the physician link for Dr. Waner and the link for Dr. Rosen. I will also contact Dr. Rosen. I think that there are so many variations of vascular lesions/malformations that maybe something that doesn't work for one person might work for another. Schlerotherapy is supposed to work for 95% of the cases similar to mine and it hasn't helped and surgery is not an option. I'm wondering what else is left?

Please let me know if you get anymore clarification.

Thanks again for following up, it is very helpful!

Kim

[KristieinStMarysGA]

Kim,

I'd like to hear what Dr.Rosen says to you, as I was hoping radiation could be an option for me down the road as well. Having been told that for me to have to more sclerotherapy the risk was way too and the reward too little, surgery was also ruled out.

Kristie