I found this group while researching AVMs after my 7 yo son was diagnosed with a diffuse AVM in his right thigh on 1/8/14. This site has been a wealth of information, along with other dedicated sites/foundations on the web. It helped lead us to a second opinion with one of the world’s leading Interventionsl Radiologist in the field of Vascular Malformations, Dr. Rosen, who works with Dr. Waner in NYC. It turns out, after sending my son’s MRI images to Dr. Rosen, he called me and recommended that I ask the surgeon for additional studies because he did not feel the MRI showed an AVM like they reported. He was concerned about a tumor. Well, the story is very convoluted from there, but to make a long story short, the surgeon refused to do more studies and refused to talk to Dr. Rosen because in his words “I don’t need any help. I know what I am doing.” Multiple radiologists from two major hospitals were adamant my son had an AVM. Dr. Rosen was the only person who thought differently, and I know it’s because he works at a dedicated vascular malformation center. So, with the help of Dr. Rosen, my DH and I were given another local doctor’s name and we fought for more studies. Now, two and a half months later, our son has been diagnosed with cancer, not an AVM. He is having surgery tomorrow. It’s an extremely rare cancer, even the type is unknown. After two biopsies, the diagnosis is simply an undifferentiated mesenchymal neoplasm. So, with that, it’s time to say goodbye to this group. But, I just wanted to say thank you all of the information and best wishes to each and every one of you.
God bless your son, your family and you, vmmom. I wish you strength too so thank you, best wishes and goodbye to you.
I've been thinking a lot about you in the last 35 minutes and I'm sure others will tell you but if we can be of any help, then remain a member. Also, feel free to friend me and I will give you my personal e-mail. My 2 children are in their 20's but hey I'm a mom too. If you can think of any way that I can help, I want to be that help for you. Oh, I used to think of rare only in terms of gems but now .... ugh!
I'm with Susan, vmmom, if you feel the group may be helpful for support, you are welcome to stay. I am so sorry about your son's cancer diagnosis. Thank goodness you consulted Rosen, and he was able to spot it. I am thankful too that you posted this discussion, as it may be helpful to another member in the future. We will be thinking about your son as he goes into surgery and sending our prayers and good wishes.
Your son will always be in my thoughts and prayers!
I'm glad that you found the right way dear friend. God bless to your son and more powers to you. Stay strong.
I'm so sorry to hear of your son's story and ultimate diagnosis.
Your persistence over the arrogance of some medical 'experts' is not unique and just goes to show we should all keep asking, learning AND sharing knowledge - even if as in your son's case it's not an AVM.
I have 2 spinal AVM's yet to be treated under the dura, 1 was treated by atrial embolisation 7 january 2014. Yesterday, I met with a consultant oncologist at Bart's Hospital in london on the NHS. His expertise and knowledge of oncology has enabled him to treat previously other people with Spinal and brain AVM's - even though they weren't cancerous... by sigma knife - a radiotherapy device. I have yet to get a date of treatment.
SO it's good to share and not compartmentalise, but we all do have to keep trying until we find the doctor with the right attitude and experience.
I've had a neurosurgeon say 'I don't know why you're here, I can't help you, this is no interest to me as I can't operate..'
What he could do was to refer me onto someone who could help...which he did.
I would ask yo to stay in touch with this site, as you never know, some one may in future have a similar experience to you..
Best of luck to your family.
I am sorry for the cancer diagnosis. I just want to say how much I admire you and you DH for being fierce advocates for you son. I can imagine how hard it must be. Prayers and good thoughts to your son for a successful surgery and complete recovery.
Thinking Of You And Your Family x
I pray the surgery went well. Even though it was not an AVM…please keep in though with us!
Best wishes! Be strong. Your son is on our minds.
Good luck to you. I nope the doctors can help your son quickly and painlessly. Stay strong.
God bless you and your family!
God bless you on your journey. We care about you and your son. You are in our thoughts and prayers.
I wish your son the best through his surgery and recovery. What an awesome thing that you found someone who fought for your son's care!
Jess