I’ve read a lot of blogs about people with avm in their arm, and I’ve noticed all of them have said they had it in their left arm and hand. I wonder why you get it in your left side. Maybe it has to do with how your arm is formed when you are a fetus? A nurse checked my pulse once in each arm, and said they were different! Has anyone had a doctor tell them they should not get schlerotherapy for the avm in their arm because it could cause more problems?
I swear this looks like MY LEFT HAND!!!hahahaha and this is my “good” side…
My avms are in my right arm, right hand, right shoulder, and various other spots. I was born with mine, and my dad has them, grandmother, and my aunt. The weird thing is that my older sister and brother do not have any avms.
Wow, I don’t think anyone has one in my family. But my great grandmother died of an aneurysm, so maybe she had one. It’s definetly doesn’t compare to having it in your head, but it’s still a pain.
Kristen Wendell said:
My avms are in my right arm, right hand, right shoulder, and various other spots. I was born with mine, and my dad has them, grandmother, and my aunt. The weird thing is that my older sister and brother do not have any avms.
i have it in my left hand whats the best cure for it ?
I have been told a way to treat it is having sclerotherapy done. They would put an injector tube into your femoral artery and snake it up to the cluster of veins in your arm. Then they inject stuff that closes off the cluster of veins. I’ve only been to one doctor recently about this, and he said it was too risky. That it could paralyze my arm if the injector hit something you don’t want it to hit. I’m going to try to talk to someone else in the future about it. About ten years ago I went to a physical therapist, and got a glove for my arm. That didn’t work for me because the blood would just go to the places with less pressure. This is probably too much information already, but before I got the glove, they showed me how to wrap my arm with ace bandages. That worked pretty good. You have to wrap gauze around your fingers and palm, and then ace bandages.
Rachel, Check out Boston Hospital. There are different methods for treating an AVM. My daughter had one in her left arm. They treated it using local injections. She was out for the procedure but it definitely is not as invasive as a you describe.
She still has pain however it is not as significant. We also do not participate in activities where she would use her arm. She had to give up Gymnastics. It is mostly a lifetime event based on what they said.
Rachel said:
I have been told a way to treat it is having sclerotherapy done. They would put an injector tube into your femoral artery and snake it up to the cluster of veins in your arm. Then they inject stuff that closes off the cluster of veins. I’ve only been to one doctor recently about this, and he said it was too risky. That it could paralyze my arm if the injector hit something you don’t want it to hit. I’m going to try to talk to someone else in the future about it. About ten years ago I went to a physical therapist, and got a glove for my arm. That didn’t work for me because the blood would just go to the places with less pressure. This is probably too much information already, but before I got the glove, they showed me how to wrap my arm with ace bandages. That worked pretty good. You have to wrap gauze around your fingers and palm, and then ace bandages.
Thanks for the suggestion. I’ll have to check out injections. That’s too bad she can’t do gymnastics anymore.
Gary Fitch said:
Rachel, Check out Boston Hospital. There are different methods for treating an AVM. My daughter had one in her left arm. They treated it using local injections. She was out for the procedure but it definitely is not as invasive as a you describe.
She still has pain however it is not as significant. We also do not participate in activities where she would use her arm. She had to give up Gymnastics. It is mostly a lifetime event based on what they said.
Rachel said:I have been told a way to treat it is having sclerotherapy done. They would put an injector tube into your femoral artery and snake it up to the cluster of veins in your arm. Then they inject stuff that closes off the cluster of veins. I’ve only been to one doctor recently about this, and he said it was too risky. That it could paralyze my arm if the injector hit something you don’t want it to hit. I’m going to try to talk to someone else in the future about it. About ten years ago I went to a physical therapist, and got a glove for my arm. That didn’t work for me because the blood would just go to the places with less pressure. This is probably too much information already, but before I got the glove, they showed me how to wrap my arm with ace bandages. That worked pretty good. You have to wrap gauze around your fingers and palm, and then ace bandages.
mine is in my right arm
mine too. Medical science has not advance enough for us as the disease and cause is till unknown
Kristen Wendell said:
My avms are in my right arm, right hand, right shoulder, and various other spots. I was born with mine, and my dad has them, grandmother, and my aunt. The weird thing is that my older sister and brother do not have any avms.
One comment when my daughter went in for Sclerothearapy they did an external injection through the tricep. No need to go through any femoral artery. The risks are described by the doctor and you should follow their instructions. For my daughter she has a bit of pain returning which was a potential in the procedure as she is still growing (11 yo).
Hi Rachel my name is Rachel as well! I was scheduled for sclero and one of my (many) Drs said they wont do it after closer reviewing do to that axact reason of it runs the risk of causing a lot more problems! I have had 3 reconstructive surgeries and I am now at a loss for treatments my AVM is soooo intertwined with nerves, muscles and is starting to attach basically to the bone no one will do anything right now or any time soon! I pretty much have to wait for it to grow again and start all over! RERUN…story of my life! New treatments will pop up from time to time so there is always hope for anyone! I have been treating mine for 12 yrs and have been aware of it since I was born so any questions please ask I may have an answer based on my experiences! BTW my pulse is always different in each had! Its kinda creepy! Lol
Rachel
Thanks for your reply. I’m sorry about the sudden stop in procedures for you. I discovered mine when I was like 11 or 12. I’m going to talk to some more doctors about sclerotherapy, I just had a really discouraging talk with one doctor. I am also a little worried that doing anything to it will just make it hurt in different ways. I’ve had the procedure where they see where your veins are, and it was a tangled mess of veins. I don’t know if they were intertwined with my bone though. That sounds bad. Hmm. Anyway, do you take anything for the pain. I have my worst pain about 6 hours into sleep, and I take Aleeve a lot.
Rachel Jackson said:
Hi Rachel my name is Rachel as well! I was scheduled for sclero and one of my (many) Drs said they wont do it after closer reviewing do to that axact reason of it runs the risk of causing a lot more problems! I have had 3 reconstructive surgeries and I am now at a loss for treatments my AVM is soooo intertwined with nerves, muscles and is starting to attach basically to the bone no one will do anything right now or any time soon! I pretty much have to wait for it to grow again and start all over! RERUN…story of my life! New treatments will pop up from time to time so there is always hope for anyone! I have been treating mine for 12 yrs and have been aware of it since I was born so any questions please ask I may have an answer based on my experiences! BTW my pulse is always different in each had! Its kinda creepy! Lol
Rachel
Could you please share the name of the doctor in Boston who treated your daughter? I am looking for a doctor in that area. Thank you.
I have an AVM in my left forearm that has caused lots of problems. The location of it is in the wrist, but it has grown all the way up to the elbow. Also, I have one in my elbow that was dormant until just a year ago. I have one in the shoulder of that same arm, but it is still dormant. The one in the wrist has caused fistulas, aneurysms, and so much pain that at one point they were considering amputation. They told me it is now growing at a cancerous rate.
I've had surgeries to completely remove the problem area, I've had embolizations with glue and onyx, and most recently, I have received alcohol treatments. I have always been told that sclerotherapy wouldn't be good. I do know someone who has an AVM in her face, and has sclerotherapy done regularly, but she only has one vein affected by the disease.