Hi Everyone,
I was born with an AVM in my rt knee which has grown up my leg and into my thigh muscle. On July 13,2014 I was simply walking in the backyard and collapsed in agony. It turns out I had broken my femur bone. I was rushed to Cooper Hospital Trama Center in NJ, sedated because the pain was uncontrollable.
Before my femur break I had been try to get to John Hopkins in MD because they have an AVM team for AVMs of the extremities. Cooper wanted to operate and since their IR/Vascular group had never worked on an AVM and and always sent the patient to another hospital.
Cooper tried to have me moved to Hopkins but Hopkins refused the transfer stating the procedure was to risky. So I am now stuck in traction with my bone healing improperly and the Cooper team still believing they can do some type of surgery.
There is a huge possibility of losing my leg or even bleeding out.
Does anyone have any advice ? I’m scared to death of what might happen and all I can do is lay here in horrible pain. The dr’s don’t communicate … This is a scary situation.
I’m looking forward to hearing back from my AVM family.
Janice, I'm so sorry. I think a good person to contact is Robert Rosen at Lenox Hill in NY. He is very knowledgeable about extremity avms. I'm sorry that you are in limbo, and I hope that someone will step up to manage your situation soon.
I'm so sorry you are going through all this agony. I hope you can get some help either through the channels you're going through now or from the doctor dancermom suggested.
Really sorry abt it.you can contact dr B.B. Lee from george washington medical hospital.He is expert dr in this regard.I have been treated by his team.My problem was same avm in my right knee.Now i have been cure 95% & i have to visit hs team again for 5%.
Hi Janice! I am so sorry to hear you are going through all of this. My Endovascular Surgeon is Dr. Alejandro Berenstein out of St Luck Roosevelt Hospital in NYC. I just adore him. Extra excited because he was on NY Med last night! I'm not sure if he specializes in extremities, but you can call his office and inquire. Maybe they have someone they can refer you to if not. 212-■■■■■■■■. good luck! Stacey
I have an extensive AVM (although it is nearly definitely a venous malformation with no arteries involved, this may be different for you) in my left hip, thigh and knee area. Literally this exact thing happened to me in November. I was walking along and fell down in terrible pain and I had broken my left femur.
I was brought to hospital, transferred and put in traction while they decided what to do.
Although it was a very risky as you have said, after some hesitation and a lot of planning an orthopaedic surgeons inserted a femoral nail (through my hip), with vascular surgeons on stand by in case of excessive bleeding. They spoke to many vascular and orthopaedic surgeons beforehand in order to plan the procedure, and also made such preparations as increasing my platelet count right before the operation to help with bleeding etc..
I understood beforehand that it was a very risky operation and I did indeed loose a lot of blood, they were not sure if they would be able to do as planned, or anything at all because of the anticipated bleeding. The outcome was the best case scenario as they succeeded in fixing the break with the nail and securing the nail with two pins. The surgeon said afterward that the most dangerous bleeding occurred when he actually got into the bone, not before it. He is well known to be the best orthopaedic surgeon in Northern Ireland (where I'm from) and so I was incredibly lucky in this regard as well.
Although I was quite unstable afterwards and required blood transfusions etc I will be okay now. My heart goes out to you as I truly understand what you are going through. Hang in there this horrible time will come to an end.
Unfortunately I live in Northern Ireland (and therefore so do my doctors).
I wish you the very, very best and hope that your doctors figure out a solution soon. I know how terrifying and painful it is at the moment, but medicine can truly be amazing sometimes, have faith in it and stay strong.
Hi Lauren,
I’m so sorry it took years for me to return your very kind and informative message. It certainly sounds like we are quite alike. I was in traction for 3 months while my orthopedic surgeon tried to figure out a way to inert a nail without me bleeding out. I was lucky to have found 1of only5 vascular drs that specializes in KTS/AVM’s in my state of NJ. So he went to work on " clearing a path" for Dr. Graf (orthopedic surgeon) to insert a nail then in June of 2016 a titanium rod with screws. However, the KTS has grown back over the areas that were cleared. I just had surgery yesterday to embolize that area again. It’s been a long 4 years but I’m starting PT to finally start walking again.
I hope you are doing well. If you get a chance let me know how you are doing. Thank you again my Irish friend.
Jay