I don't know what to do

I have been seeing dr Daniel link at uc Davis and he was helpful in the beginning. I was told he is the best vascular specialist and interventional radiologist in California. I hit a block though. He did sclerotherapy in December and thought I was cured but I still had a lot of pain in my leg. He did an ultrasound during my follow up in January and found another avm. The problem is I had my second surgery on February 8 and he wasn’t able to find the avm in any part of my leg this time. I am still in a lot of pain. I can’t sleep. I’m losing hope. I called him the day after the procedure to get a better idea what happened and what I should do and he is questioning his own ability to help me. He said I am a rare case of rare cases. This pain is not going away, it is just getting worse. I contacted a patient representative to find another doctor but no luck. Dr link did the angiogram in my first procedure but only found the venous malformation. now he says I shouldn’t be in pain and has refused to give me pain medication. I’d give up if I wasn’t in so much pain. Can anyone recommend a clinic I can send my medical records to for review?

I’m sorry to hear it, Travis. If you click on Doctors, you’ll find contact info for Dr. James Suen and Dr. Wayne Yakes. They are both highly respected in their field. All the best!

Hi Travis - Im sorry to hear that you have a great deal of pain right now and your doctor is unable to help you right now. Dr. Suen is an ENT so he would not be able to help you, but Dr. Wayne Yakes at Swedish Medical Center in Deniver should be able to review your records. HE is quite familiar with most type of extremity AVMs, including legs. Dr Yakes office number is 303-■■■■■■■■. Please give them a call to see how they can help you. Best of luck and please keep us posted.

Hi Travis I would suggest that you contact Dr. Reinhard Schulte at Loma Linda University. He treated my AVM and has always been there for me despite the fact that I came back to Colombia and that I haven’t been back to California since 2004 when I had my last treatment. If you need someone to talk to add me as a friend and send me an email and we can talk though the inbox or find a another way. I might understand things that others can’t. I will pray for you.God bless you.

My daughter has AVM on her lip and nose. We just had our first procedure with Dr Yakes. He is great. Also it is great that other medical staff take care of a lot of Dr Yakes patients and have seen many cases like ours. We felt that we were in good hands.

Thank you everyone. My employer has provided me with a patient advocate. I will give her these names. It hasn’t been good so far. Thank you all again.

I know many times patients need to advocate for themselves. If you are in pain, go to your PCP (primary care physician) to to let them know your needs. That will buy time to get things in order with Dr. Daniel's findings or lack-there-of. If Dr. Daniel "questions" his ability to further help you, ask who he'd recommend. If he didn't find an AVM in the leg, he may not be your guy. Or, be referred to a different endovascular neurologist? Sometimes you need to get a second opinion from a same specialty? Dr's don't like to do this; it's an ego thing but it's your leg and your pain. Keep looking out for yourself... I'm rooting for you.

I wish you the best. I have heard that Stanford is very good.

Hello Travis,

While we can't help with your pain management, please know many of us are in the same boat.

AVM's are a rare condition and many AVM's are difficult to treat and cure. No one particular medical discipline/specialist seems to feel qualified to provide AVM patients with comprehensive care and treatment. I haven't visited Dr. Yakes in Denver yet- in part because a number of members here who have had foot AVM's had mixed feelings about the outcome of their time with Dr. Yakes.

Like you, my wife and I are frustrated with the visits with doctors who ultimately suggest they might not be qualified to treat my foot. In the meantime my AVM is clearly in growth mode. Its painful and leaking a little blood but isn't as painful as yours- it only wakes me up a few times per week. Please follow up with some of the previous posts suggestions for doctors.

Thank you for sharing your experience with us. The knowledge shared by fellow AVMers have been the most help to me in understanding this crazy condition that we are all afflicted with.

Thinking outside the box: have you tried marijuana for pain management? I haven't... yet. But we are fortunate to live here in Colorado, where it is legal and easily accessible.

Best of luck and hang in there!

Hi Travis,
The care for my AVF has been done through Kaiser Permanente in Sacramento. Dr. Ji did my angiograms and embolizations and Dr. Jian later did my craniotomy to remove the AVF from C1 of my spine. Great job and follow up. If you can access Kaiser I'd recommend them.
I can't relate to your pain as I have been fortunate enough not to have any. I am partially paralyzed from the waist down as a result of permanent damage done to my spine from the AVF. I walk a bit with crutches and use a wheelchair to get around and out as I want.
This is a process, mine began January 2014, with a variety ups and downs along the way. There is always something to be thankful for even in the darkest of times. Feel free to contact me if I can offer further assistance.