I am 26 years old. When I was 12, I was diagnosed with an AVM in my right calf. I was treated at Duke Medical University Children's Hospital until I was 18. The only option for treatment I was given at the time was giving sclerotherapy a try. We tried 4 differant times, the last being a very aggressive 23 injections. But just as they warned us that because I was still a growing child the AVM would continue to grow, and it did exactly that. When I turned 18, because I was an adult and both of my doctors were moving out of State, they turned me over to the adult side of the hospital where their advice was what my doctors expected it to be, That I needed to give some serious thought to amputation(2005). There was no way I was ready for that! I decided that I would just wait it out as long as possible and hope there would come a miracle treatment available. I haven't had any treatment since 2005. I have had two children now, and every since I delivered the second one the AVM has been causing serious non-stop pain. I live in a very very small town(Spindale,NC) where the doctors know absolutely nothing about the condition. Friday, I got a call from a doctor in Charlotte,NC(the 3rd one in the area since Jan 2014)who once again had gotten my hopes up saying that he wanted to try some foam treatment and we could start as soon as he got my records from Duke. After receiving those, and reviewing them for a week, he has now decided that it is out of his league and we need to seek an expert at a university somewhere. His recommendations are maybe back at duke(which is 4 hours away) or Virginia(which is about 6). I do have an up-to-date MRI that was done at a local hospital. I feel that this is the only progress I have made in the last 2 months. I am suppose to have an appointment at a pain clinic on the 17th of March, but at the moment I have no pain medicine and over the counter medicine just isn't cutting it anymore. I have been to the 4 closest hospital around me several times each and gotten scripts for pain pills. They have all 4 now told me that they CANNOT treat me for my pain! I am infuriated. I'M tired of being turned away and sick of being in so much pain! I feel like Nobody understands the chronic severe pain I'm constantly in. It is to the point where I have been walking with a cane since Dec 2013 and it has become impossible for me to care for my 2 1/2 year old and my 9 month old sons. I am at my breaking point and I guess what I'm looking from for you guys is any advice at all on what to do next or a good doctor recommendation and how to go about getting to one with medicaid as my only insurance. Thanks in advance for all the support and replies :-)
Brittany,
It must be so hard to keep going some days. Forgive me for stating the obvious, but you need to find the best leg AVM doc that there is. And this means you are going to have to travel. Forget 4 hrs or 6 hrs...it could be many more than that. I traveled 1000 miles for my treatment. Now how do you find the best? Start here....read the stories of other members who are suffering from leg/arm or pelvis AVMs. Who are they seeing? Maybe check pub med and see who is publishing research on the treatment of your type of AVM.
I am so glad that you will be able to get into see a pain doc on the 17th. Just take it day by day.
I don’t have any advice. However, this member also suffers from pain due to her extremity AVM…http://www.avmsurvivors.org/profile/Tweet
You may wish to message her. I think she has Medicaid too and small children. Good luck!
I am also going with the fact that you need to get to the BEST, and iff that means travel than that's what you do to save your leg. That is your goal, at ALL costs. You may google US News Top Docs, and check them out and better yet, a Super Doc that will be listed. Mine is in my brain, so I needed a neurosurgeon, I believe you need a vascular surgeon specialiaed in AVM's. I'm ONLY here to tell you this, since I traveled 3,000 miles each way, not once but twice, and for years hours away, every single day to get to the best. Please, save yourself before a hemorrhaged or stroke causes you further problems. Good luck.
I am willing to travel wherever possible as long as I have the money! I would rather spend a few months being treated somewhere and missing out on a little bit of my children's lives than miss out on years or worse! And since the pain hasn't gotten unbearable and I'm already walking with a cane, the quality of life is not at all what I would have liked to have while raising two small children. My hopes were that they would be just a bit older before it got this bad. But I absolutely hate them seeing me cry all the time because I'm hurting. My two year old often ask me if Im ok? He is not supposed to have to be worried about me! This is so unfair!