I have been going through tons of surgical procedures 10 to be exact with more on the way. Seems everything conducted has worsened my condition or just failed to get the positive results hoped for 6 months ago my left hand had larger than normal veins protruding but I had no concern I have large veins anyway. However my thumb of left hand was turning discolored and tiny arteries were showing through the skin. Then it happened (old faithful ) she blew at that point I was able to stop the bleeding myself fairly easily. But I knew it’s time to go. Surgeon saw the thumb and immediately said its vascular so mra/mri with/without contrast and result was in AVM off to IR for Angiogram he preformed 4 embolizations in a six day period and the thumb turned black then development of a large ulcer on tip of thumb. There is really no Info out there for AVM of hand or digits. So when I look for treatment options the Doctors tell me that pertains to AVMs of spine or brain and my case is rare. Well now it’s talk of amputation and then later doing toe trim to finger reconstruction. That will make 12 surgery’s since May 2019. If that is the cure im ready but no-one is willing to affirm this will cure me of the AVM. I have been hospitalized 2xs 1 day and 4 days the AVM ruptured and took 6 hrs of surgical procedures to get bleeding under control. My mental state has come under fire a couple times now on meds to help calm that down the biggest help seems to be the drug Gabapentin I have been taking about a month kid you not pain is still bad but its been slowly becoming manageable. I just dont want to have anymore failed procedures. I wish someone could tell me this will cure me of the AVM. I mean I almost bled to death lucky hospital was at the end of the street when rupturing acured. Theres way to much to put it all out there. But if anyone has been through my situation any suggestions? Please or maybe I have some experiences to share with you please reachout to me it’s really hard when you feel like your fighting alone.
Charles,
Welcome to AVM Survivors! You are really going through it!
I think you need to have a bit of a read through the Extremity AVM category and possibly the Facial AVM category. I hope some of the @Extremity folk will know a little how to advise you.
I have a brain AVM and my understanding of it is that extremity and facial AVMs are most often treated with alcohol embolization rather than a glue or coil embolization, as is the case for a brain AVM so I would say you need to find someone who knows about extremity and/or facial AVMs.
One of the doctors I think works in this area is Dr Suen in Little Rock AS but I am sure there is at least one other specialist we know of. I’ll have a think and a search.
Hang in there!
Richard
The other specialist I have heard of is Dr Wayne Yakes at Swedish Medical Center, Colorado. A bit of searching helped me remember his name. I think his current practice is here:
Dr Suen seems to be a head and neck specialist rather than hand or extremity, though I think we have a number of extremity folk whom he has treated:
@CharlesH I want to welcome you, and let you know you’re not alone in the frustration! Although, you sound like you have gone through quite the ordeal with your hand. My original AVM is located in a few spots in my left foot, but as I embolize it I seem to “generate new friends” as my surgeon says. One of these particular “friends” was in my hand. I was lucky enough that after two different removal procedures, it was able to completely removed with little deficit. But, I couldn’t imagine having four embolizations in a 6 day period! That seems like an awful lot for your hand to handle. Also, how often, and at what dose are you taking the gabapentin? I was also advised to utilize that in place of ibuprofen because of my bleeding but I just could never seem to get it to help the same way. My AVM in my foot has been embolized through a venous puncture now six times, and directly stuck twice. Which method did your doc use when you had your surgeries? Has he opened up any other options for you? If you would be open to travel, I am not sure where you are but I know of an amazing IR doc in Chicago, IL. I found him based of referrals on here, and requested a second opinion from my original surgeon. I went from no results and frustration, to a man who deals with really nothing but AVM’s. His knowledge is absolutely astounding and his confidence makes you feel at peace. His name is Dr. Vogelzang, and he practices at Northwestern Hospital. But, as @DickD mentioned Dr. Yakes is another leader in the AVM world. He was also recommended to me by a friend who works in neurosurgery and refers him there often. I’d be happy to share some of my other tips and tricks that help me get through the day, just shoot me a message! But, I did want to just reach out and let you know you are far from alone. The pain is something indescribable, and nothing anyone without an AVM could understand. You’re a fighter and amazing person, don’t forget it!
Thank you to everyone. Sorry I have been silent for some weeks. However my condition worsened again. Iwas taking in for extreme reconstructive and amputation. 6 AVM’s were removed as well as the glue from the emboldening procedures the glue was on my ulnar nerve. That being said 1 remains in my wrist. To lose a part of me has been in itslef a feat to overcome. But not ready to loose half my hand and replace with a toe. Ouch!!! All attempts to treat though IR have fail me and worsened my condition. Im in the care of a ortho D.O he is as good as in gets. When it comes to reconstruction and orthopedists. Found him in Allentown near Philly. We plan to monitor this last beast and build are plan of attack to eradicate. Thank you all again I will keep you updated chins up everyone we will beat this together love you all.
I can tell you, with the battle you are in, saying “chins up everyone” had me sitting here in awe. Thank you, you made me stronger reading that, and yes we are together in these journeys.
Its great you have a Dr. you trust and now in a position to monitor and plan the next steps must be comforting knowing there is an opportunity to do that. My AVM was in the brain, so I have no first hand experience with AVMs elsewhere but from folks here, they definitely are persistent. I hope things progress positively and the stage is set for the next treatment. Take Care, John.
Hear! Hear!
I can’t say better than this. @CharlesH you are in my thoughts. You’ve got some of the toughest choices to face anyone but you’re a survivor! Stay strong.
Richard
Hello!
I just joined this group last night. Yes sir, I have an extensive AVM in my right arm, mainly from elbow to my fingers. It involves muscle, tendons, bone and obviously veins/arteries. Discovered at a child check up when I was a small child. First surgery at 8 years old. I’ve done extractions and sclerotheraoy (sp?) I’ve never experienced pain so bad afterwards!
Right now I’m on this “test” wear I’m working with a cancer doctor taking Sirolimus. It’s a 3 month trial. I’ll post more soon, pain is bad ATM.
Stay strong and thank you so very much for your post. I’ve searched for years for a support group, and your post is the first I read.
Marty
Hey Marty,
Welcome to AVM survivors! It’s great to have you join us and even better that you’re able to share with Charles. Sometimes it feels very lonely when you don’t know anyone with the same condition. Most of the folk here have brain AVMs and people with an AVM in their arm or leg or hand or foot have fewer friends to turn to, so it is my pleasure to welcome you in.
Your AVM sounds really rather extensive and I know sclerotherapy is painful so I take my hat off to you for dealing with all of this from such a young age!
Have a look in the Types of AVM category on the home page and in the is a section with people’s stories, under the Extremity AVM category. Note that some stories will be quite old, so if you see a date against a post that says Jan 12, that’ll be 12th Jan this year but a post with the date Jan '12 (note the apostrophe) dates back to some day in January 2012 and the people in that conservation will probably have moved on meanwhile.
We also have an Extremity AVM group (look under groups on the main menu, top right). If you join the group, you’ll get an email any time people use the “@Extremity” label in a post.
I hope some of us can cheer your days and you can help others along as well.
Very best wishes,
Richard
Thank you, sir. I’m extremely thankful to be here. I hope to revive the Extremity AVM Group as I can see many of the posts are dated.
Hopefully I can help someone and also receive support myself.
Best regards,
Marty
Hey marty. Thanks for joining the group. You say you have an AVM? I have a VM in my right buttocks so its not quite the same. I’ve just had sclerotherapy for the second time, and I can relate that it’s certainly painful. Nice to see you’re on sirolimus (which also called rapamycin), I really hope it works for you! There’s actually a pretty neat history behind that drug
Thanks for the message. I want to write more but my arm is swollen tonight.
I hope you have found some relief. I found sclerlotherapy extremely painful, yet I did it twice. Hoping to try Cyber Knife.
I would love to hear an update on this. I have a very similar situation.
Hi Charles,
My son has an extensive AVM is in right wrist palm and thumb. It is starting to bleed a bit at the top of the thumb and he is in more and more pain. We have not had any procedures done at this point. We are outside of Philly and your story is pretty remarkable. How are you feeling? I would love to hear more about this doctor from Allentown as we’re not too far.
The medical team is at LVHN my Surgeon is Dr Paul Sibley D.O with LVHN Orthopedics. Feel free to mention me by name (Chuck) to Dr Sibley. Sounds like our symptoms are very much the same the entangled over growth of vessels cause extreme pain as well as damage to tissues. Hopefully you can address very soon Dr Sibley is not AVM expert im his first case but after 2nd oppion with Cleveland Clinic. I couldn’t be in better care than Dr Sibley of Leigh Valley Allentown Pa. Plus he is just a amazing person as well.
Chuck, I really appreciate the info. It is tough to understand these complex situations and your case definitely seems similar to what my son will go through. Keep me posted on any other progress. Good luck to you.
Just checking in to see if you were able to contact Dr Paul A Sibley. DO in Allentown pa with Leighigh vally orthopedics? He is amazing Im 2 weeks out of surgery AVM’s are gone.
Hi Chuck,
Due to COVID, we haven’t reach out yet. I plan on setting something up as soon as we’re in the green phase.
Phil