My newly discovered avm is on my left arm by the wrist area that the doctors thought was a ganglion. Thankfully an MRI showed this AVM. The doctors are sceptical to operate, but I am experiencing pain an now a tingling sensation on the arm. What to I do! Any advice will be greatly appreciated plz!
what type of surgery are they looking into?
The doctors are extremely vague as to what and how they will operate. The only thing i understood was that the vascular surgeon said that the will have to be there including an orthopedic surgeon. But for now i must "try" and live with it? So with this pain and tingling sensation i really dont know what to do!
You need an Angio-Schlerotherapy treatment from a specialist and then get it excised by a hand surgeon with possibly a neurosurgeon to assist. DO NOT WAIT! The longer you wait the more residual damage you will have and the longer your recovery time.
Also, please click on my name and read my other posts. I just went thru this about 1 1/2 yrs ago. If you still have questions, feel free to pm me on here. BTW, I still have nerve damge and residual weakness in my hand. I was on nerve pain medicines with occasional percocets and NSAIDS for a year after my procedures were complete. I am just getting to where my arm doesn't pain me at least several times a week.
The pain and tingling is your nerves being damaged in the confined space of your wrist as the AVM grows and compresses them. IF you don't experience it yet, you will probably start experiencing numbness as well, like 1/2 or all your hand has fallen asleep, especially when you wake up. Is your AVM on the radial or ulner side? How big is it?
Hi chris,
Sorry please bear with me as i am having a problem finding my way around this site! Thank you so much for your response. I am trying to get to your page to read through it. Do you have use of your hand after the operation? It seems to me that the surgeon i went to is obviously not very knowledgable about this condition as he said he couldnt understand why i am in pain? Luckily after reading all the different profiles i realised im not going insane when i say i suffer from pain. I have so many questions chris, and your help and input is greatly appreciated.
I can no longer do push ups, my wrist just does not bend back correctly anymore, but I would say I have about 75% strength in it now. it gets a little better every month and I get pain less and less as well, but it is a long road. I still get my wife to open jars for me, but I can use it, I have full use of my fingers, etc. I know many on here are against surgery or may have had bad experiences, but I believe there is no other choice with a wrist AVM since so many structures are packed into a small space there and there is no room for the AVM to grow without damaging something else.
Farzanah, it is quite risky to have a surgeon who is inexperienced with AVMs operate on yours. If the AVM is incompletely removed, the part that is left can recruit new vessels and invade new territory. Since you have multiple AVMs, it is possible you have a genetic condition called HHT that predisposes you to AVMs: see http://hht.org/
If at all possible, you should travel to an HHT center for evaluation. If you have children, they should also be evaluated.
Agreed. My Schlerotherapy/embolization was performed by someone familar with the procedure who had done it before (though anouther handful of people were there just to watch so they would be familar with the procedure). My Hand Surgeon was a Fellowship trained surgeon who was arguably the best hand surgeon in the Pacific at the time and he still decided to have a NeuroSurgeon on-hand to assist. It can be complicated. This is why they glued all my vessels first and then re-evaluated using MRI and Ultrasound to ensure the AVM was isolated from it's supply vessels prior to removing it. Another danger is that if they don't properly isolate it you face a real danger of bleeding out or losing your arm at the elbow to a tournicut. My hand surgeon refused to do the procedure until they sealed the vessels supplying the AVM, and for good reason!
About a year ago I had surgery on my wrist. My doctors never did an mri on the area and didnt know until they got in there what they were dealing with. I am truly blessed that God was watching over me that day and nothing serious happened. Its been 13 months since the surgery and I guess I am as good as i will get. I have a problem with my doctors taking me seriously. If it wasnt for this board and Chris Frantz i believe i would have gone crazy. I dont have near as much pain as i had before so that’s a good thing but my hand and forearm are far from normal. For some reason the stitches did not dissolve and had to work their way out which caused a lot of pain in the healing and I have an area that is hard in my wrist from what I believe is scar tissue. The scar tissue makes my wrist feel really tight and when I fully flex my wrist in either direction I feel quite a bit of pressure in my forearm and hand.
Laurie, I am so glad that I was able to help you. The hard area is scar tissue, I have the same thing and miine is also tight, though it sounds like you have more wrist deflections than I do, which is great! I am still seeing improvement, it levels off then gets better then levels off again. At about the same time removed from surgery, I thought I had healed as much as I would but it has SLOWLY continued to improve since that time. Keep working the muscles and tendons as much as you can comfortably do, and I think you will continue to see small improvements over time. Also, the pain sensations have continued to come less intensely and less frequently over time for me. I hope you find this to be true for yourself as well.
I wish your initial treatment had been managed better. Unfortunately, these more rare conditions don't always get treated well or correctly. Fortunately for Farzanah, he had the proper imagery done and knows his issue, so now he can help steer his physicians and specialists into giving him the proper care he deserves.
I believe there is a good chance that I have HHT as mentioned by dancermom and will persue that further after I return to the states at the end of this month. I have other vascular anomalies readily apparent on my right leg that have been there since birth that were supposed to fade and never did. In fact, over the last year or two they have actually started to spread/become more apparent. Also I am concerned for my children. Out of 4 children, all but my oldest were born with markings that, fortunately, faded over time but are still of some concern considering my history and the fact that my Grandfather experienced many vascular issues later in life. My son and one daughter had markings on the face, near one eye and the bridge of the nose for my son and an extremely dark patch on the end and side of the nose for my daughter that took several years to fade. My other daughter and several on torso. None of us experience nosebleeds except one daughter very rarely, but my sister used to experience very extreme, random nosebleeds and I have had to deal with the excision of nasal polyps and will probably have to undergo that procedure again fairly soon, judging by the way I have began feeling stopped up all the time again and started snoring again, according to my wife. I will be doing more research into this in the near future so if this is something I passed on to my children genetically I can have them screened and they are madde aware of things they need to look out for.
Sorry, I hijacked this thread a little, but every piece of information we make available from our experiences and thoughts is an opportunity to supply information and knowledge to someone else and helps us all realize that, even though those around us may not always understand what we are going thru, there are others out there going thru the same thing and we are not totally isolated or alone.
I agree with you dancer. Its risky. Be careful