Avm in forearm

anyone have an avm in their forearm. i think i am alone out here.I am going to see Dr. Rosen in Manhattan at the end of the month. I can’t take the pain anymore, i want to see what he can do for me.

You are not alone but one of the few. I have a very large one (22cm x 12cm x 7 cm) in my left forearm that I have been dealing with for 18 years. When I was first diagnosed there was no information out there. If you have any questions let me know. I have had many procedures including quite extensive ones. Ask me anything you want and if I can answer it I will or at least tell you what I have expierienced.

i have had 4 embos and 2 surgeries and a new nodule has grown. what have you experienced and has it helped? I am looking for something at this point, just don’t know what yet.

I have had 2- surgeries as well. First one was a de-bulking attempt and the 2nd one was a removeal. They were able to get most of it but not all. In the past 8 years I have been having the embos but the relief only seems to last for a couple of months. I have an appt next month with my arm Dr. at mayo as well as a vascular surgeon so I am thinking they will probably try another embo or possible removeal again. I will keep you informed of what we decide. In the past we discussed continuing the embo treatments with pain medication ilo surgery due to the complications. Due to the location of my remaining avm’s surgery will cost me the use of my hand. They deffinatly seem to continue to grow back. I would assume yours is painful like mine and I usually wait until it starts keeping me up at night before I go back in.

wow, i want to do another surgery just have to wait till the insurance has been reactivated. It makes it hard daily with my arm as i have a baby and it just adds stress. I am hoping more of the avm can be removed as now i think carpal tunnel has arose in my hand.

does it hurt? do your veins hurt? 2 of my children say their veins hurt in their forearms

no my veins dont hurt. you can’t feel your veins in your arm. when it pulsates it does hurt

Rabecca Primeau said:

does it hurt? do your veins hurt? 2 of my children say their veins hurt in their forearms

this comment is confusing to me you said they don’t hurt, you can feel them but then said they only hurt when they pulsate did you mean they only hurt when pulsating otherwise you don’t feel them and they don’t hurt??

Anyway maybe that is what they are describing that their veins are pulsating and they hurt when they are?

My husband says that if high pressure blood is pumping from arteries to a low pressure vein causing it to expand one would think this expansion would cause pain.

lauren said:

no my veins dont hurt. you can’t feel your veins in your arm. when it pulsates it does hurt
Rabecca Primeau said:
does it hurt? do your veins hurt? 2 of my children say their veins hurt in their forearms

hiya lauren, my hubby has a large avm down his whole left arm, i find its hard to find other people with this too! all the docs here in the uk so far have given him painkillers, the dye test many years ago… and thats about it!
over the last year or so its become more and more painful for him, so we are in the process of trying to see a different consultant to see if theres anything they can do for him.
i dont even know what kind of treatment is available, especially for this type of avm, any help from anyone would be appreciated!!

i had the dye test as well and the next step for me was the embolization done by an interventional radiologist. He blocked off the veins so it wouldn’t grow.

Leanne Scaife said:

hiya lauren, my hubby has a large avm down his whole left arm, i find its hard to find other people with this too! all the docs here in the uk so far have given him painkillers, the dye test many years ago… and thats about it!
over the last year or so its become more and more painful for him, so we are in the process of trying to see a different consultant to see if theres anything they can do for him.

i dont even know what kind of treatment is available, especially for this type of avm, any help from anyone would be appreciated!!

Hi Leanne, I had a Debulking procedure years ago where they removed the majority of the AVM in my arm but along with that I lost everything in the top left half of my arm including part of the bone. That helped with the pain for about a year and then the pain was back. The last embo I had has been helpful. They have also started me on nerve medication. I am not saying my pain is totally gone now but it is much more tolerable. I still need to take the pain meds from time to time when I overuse my arm. From what I have been told, this will be going on forever. At the last embo I had 8 new starts in my arm. I have always used the pain as a guideline as to when it is time to go back in and have some more procedures done. When the pain is there everyday and it starts to wake me up on a regular basis its time to go back in. I know it would be a big trip for you guys but I have been really happy with my new Dr. at the Mayo Clinic in Rochester Minnesota. I finally now am seeing just a vascular surgeon and he uses a different solution in the embo procedure then alot of others. It made a difference. If you need any info from me please let me know and I would be glad to share it.

Leanne Scaife said:

hiya lauren, my hubby has a large avm down his whole left arm, i find its hard to find other people with this too! all the docs here in the uk so far have given him painkillers, the dye test many years ago… and thats about it!
over the last year or so its become more and more painful for him, so we are in the process of trying to see a different consultant to see if theres anything they can do for him.

i dont even know what kind of treatment is available, especially for this type of avm, any help from anyone would be appreciated!!