Hey hey
Just wanted to say hi to everyone, I'm young Dane studying in the US, almost done with school, then it's on to the masters program if I can keep my grades up.
here's a bit of background:
I was born with a venous malformation in primarily my left hand, the odd thing is it's not always visible, I have the ability to fully conceal it by just being relaxed or keeping it above heart level. But should agitation occur or should I become stressed, it will immediately change color as the veins will begin to reveal themselves, and fill with blood - almost a smaller scale of the Hulk, heh - not a pleasant experience either way. Very uncomfortable, feels like a tidal wave just pushing through to my fingers, and can be painful as well.
I've had four embolization treatments at Lenox Hill Hospital NYC with Dr. Rosen, though they were all spread far apart in time.
When I finish my bachelors I plan to take a full year off of work and school to have 3-4 surgeries with Dr Rosen once again, back to back to back to see if I can fully obliterate this out of my system once and for all.
He never recommended surgical excision in the past, but I never asked, and has since moved onto an alcohol base formula vs foam treatment.
What are your success rates of embolization treatment? As with surgical excision? What are your stories or treatments/complications? Have your treatments been worth it? I've only begun to dig up information all around and it's vast, so much to take in. I understand everyone here has different areas, locations of their AVMs. Always good to know I'm not alone. Wishing everyone a lovely Spring day :)
Hi Zef. welcome! You may wish to join this sub-group…http://www.avmsurvivors.org/group/extremityavms
Fantastic, thank you so much!
Zef, there are between 80 and 90 members on this site with avms or vms of the arm or hand. Only four of them have reported complete obliteration of their malformations, and that was through the resection (surgical removal) of small, focal AVMs. For everyone else, treatment has been an ongoing management situation similar to what you have experienced so far.
Wayne Yakes in CO treats many arm and hand avms using alcohol sclerotherapy, a treatment he originated. There are many cures reported in his articles, but there is no member here reporting total cure of an arm avm/vm from Yakes's treatment, though we have many Yakes patients who are members. There are a couple who have reported obliterated of leg or foot avms/vms with Yakes; I can give you their names.
Rosen and Yakes are the most often recommended doctors here for arm avms, so you are in good hands. Patricia Burrows at Wisconsin Children's is studying the effects of different drugs on avms, but so far no pharmacological breakthrough. I hope that the next decade will see a change in treatments. VMs can be very painful, but at least you do not have shunting and will not develop heart failure.
Thanks so much for the detailed response! It's been so long since my last treatment I'm almost wondering if the embolizations would be worth it.
I've read that surgical removal is known to work but form what I saw they were focal large masses in one area, I'm guessing different areas are too risky? Also is there not a chance that they can grow back is they're surgically removed?
The names would be lovely, I'd just like to ask them how many treatments they went through until they considered themselves "cured"
thanks again for your help =)
Welcome to the AVM site, Zef. I'm sure this group can offer some insight to help you with your questions. My AVM is in the brain, so I wouldn't know the answers to your questions. The pain sounds pretty awful; I hope that gets resolved soon! Best wishes to you.
Hi Zef!
I have a VM in my left arm and hand and just finished my first embolization with Dr. Rosen in NYC. Prior to that, I had three unsuccessful surgeries in my arm and hand. The surgeries were meant to remove the small VM, but in each case (when I was 11, 14, and 17 years old) the malformations grew back larger and more painful each time. The surgery only prompted more extensive growth, making full excisions less and less possible each time. Now my MRIs have confirmed that the growth is all throughout my arm and, due to the sensitive nature of the hand/arm area, surgically addressing the problem again will only cause more trouble than it's worth.
My past surgeries were at Children's Hospital of Wisconsin, led by a reconstructive plastics surgeon but with input of radiologists, neurologists, etc. I had lost substantial feeling in my fingers due to nerve compression from the VM in the carpal tunnel area of my wrist. As a result of the highly invasive surgeries, however, my wrist and hand had ended up in progressively worse shape after each procedure. They had to snip tendons and do crazy stuff to counter blood loss. I wasn't able to use my arm/hand for months, had to go through physical therapy and have still not regained full range of motion on my left side. I can't play the piano anymore, I have some wicked scars, and I have permanently loss some feeling in some of my fingers.
On the other hand, it's been less than a week since my first embolization with Dr Rosen, and I'm already typing a response to you. This is miraculous to me! I know it's a longer process, but I'm very encouraged by the results and look forward to seeing what multiple rounds with Dr. Rosen and his team will bring to me.
I wish you all the luck. I have discussed my past surgeries with Dr. Rosen at length and I'm not at all surprised he didn't bring up surgical removal as an option, as for me (and apparently for many others) it causes so much more pain than it is worth.
Good luck!
Terrific news about your progress, Maedquist! I'm so glad your embolization did the trick.
Fantastic news! Glad to know it's going better already :)I feel/hope that the ethanol treatment is a lot more successful than the foam he used prior, he talked it up pretty well.
I find it so strange that they grow back if they're surgically removed, Maybe some kind of gene therapy will be envisioned in the future, I'm certain something will come along. We just have to be patient. How far apart are your surgeries currently scheduled?
Best of luck, keep us posted :)
Quick question on all of your Doctors honesty, not to sound rude at all to the ones who are helping us. But the last time I went to visit Dr. Rosen in NY to see about more future treatments I mentioned I would like to do 5 to 6 treatments to obliterate the AVM in my hand, he said that probably only three would be required; which in a sense did give me a large amount of hope; but in my mind a hospital is still a business that must be run and they like to see returning customers. Just curious.
Oh also, how do you know if you have a high flow or low flow AVM? Would my current physician have this information on file?
If these doctors can obliterate an avm, they are thrilled, Zef. Because it's no fun to watch someone come back and suffer through many treatments. You have to have a "win" once in a while. As to high flow or low flow, it should be in your records if you have had imaging, or it can probably be determined by ultrasound. Sometimes, even a stethoscope is all that is needed to pick up a pulse where it doesn't belong.
Hi Zef. I'm NOT a doctor: I've been a nurse at a Level I Trauma Center for over 30 years. I'll try to answer your query about hospitals as a business. Yes, they're all in business to make money. However, they make money by providing excellent care; including performing safe and successful procedures, having positive outcomes for the patient, and receiving word of mouth referral from the patients, families, and medical providers. Insurance companies will not pay for any procedures that are not medically necessary. Usually, the patient is not required to pay for something that was denied insurance payment based on medical necessity(unless it's cosmetic surgery). Of course, laws vary by state. By far, most doctors don't go into the medical field for the money; the majority are in it to help people. After all of the college loans and malpractice insurance payments it's not the huge amount of money that people would think. I hope that helps.