Hi My name is Alex, I have had this condition since a young boy around 5 years old from what I remember (I’m 32 now) I have a discoloration from my Cervical spine to my left hand, I have had 2 surgeries for growths in my arm which I believe are Embolous but I’m not to sure on the medical term. I was diagnosed with AVM from a Cardiovascular surgeon here in NYC. The main issues I have are soreness pain almost daily, tingle in hand, discomfort while sleep which affects my sleep. I’ve always and still am an active person I play sports and exercise through the pain, but as I am getting older its becoming a bit more rough. I always felt alone as I do not know anyone with this condition, I was shocked to have found others and being that I have had this almost 30 years I can answer questions and offer support.
Hi Alex. Is the colour a port wine stain. I have one and had laser surgery to have it removed, but it only caused problems. You know the avm means a problem with blood moving from the arteries to the veins. I have the pain also as sometimes the blood is blocked from moving between the two.
That’s exactly what it looks like, yea I had heard of the laser treatment to remove the discoloration so it caused you more problems how so? I thought about it but never went through with it. Yea the pain is something I’ve gotten used to a bit but I’m seeing a neurologist now to see if I have any Neuropathic issues causing it, I’ll update here if I find any nerve related issues causing the pain as well.
Just make sure you stick with a vascular animosities specialist and not one of those laser hair removal,clinics. They have to do many tests to make sure what blood vessels are involved. Venous, arterial, deep veins, capillarys etc. each malformation is different and when mine was lasered it stopped the flow of blood.Dr. Gerominas in NY is amonst the best and I believe Dr. Rozen is also in NY. Since you have spine involvement, there may be other issues also. Generally arms do not respond well as they have deeper feeding vessels that the laser can,t reach. Facial port wine stains are superficial and can getmsomemresults from lasers. You should definatley follow birthmarks.com site. Great free information and talk with people from there. You should also find out what kind of port wine stain you have. Klippel Trenaucy, Parkes Weber, capillary malformation etc.mbirthmarks.com has all that info, but always confirm with your doctor. Sounds like you had sclotheropy to get rid of embolus. You will learn a lot on birthmarks.com. Good luck and feel free to contact me.
Personal email ■■■■■■■■■■■■■■■■■■■■■ Your condition is quite different from mine, so I don,t want to give out bad info.
I appreciate the info, I actually had the surgery with Dr. Rosen at Lenox hill in NYC if that’s the Dozen u mentioned, he’s good brought down the growths I had in my arm, as far as the discoloration I’ve gotten used to it, at this point in my life I’ll just leave it alone as I was told its just superficial nothing serious, I appreciate the info, what part of your arm do u have the AVM?
My pws is on left arm.little pinky all the way up to my shoulder on the outside of the arm. It was a pinkish red colour. But after laser it turned purple and inflamed. Yes Dr. Rosen is very good, and I believe he specialized on just arms. Pws are so different on every part of the body. If you accept the pws best to leave it. My surgery was just for cosmetic purposes. Sounds like you had other problems and I hope you do ok.
Yes he’s very knowledgeable one of the few doctor’s I’ve met on my journey who knew right away what I had and how to treat it, A lot of Doctors had never seen this condition before, I appreciate the good wishes, I hope your arm gets better as well.