I found this site thru Google and I hope that I am in the right place
I have a 17 year old daughter with a malformation in her left arm. We have had two surgeries in 18 months and of course it is back and are going to have it embolized on August 9th.
Can somebody answer some general questions for me?
Can this occur in other parts of her body? She has frequent headaches and the neurologist I just took her too kind of blew me off when I asked about that possiblity.
Should I take her off birth control? We put her on it to help control the headaches but maybe it is making her arm worse?
Is embolization the right move for us? What kind of questions should I be asking the doctor?
Thanks for any feedback
You are in the right place!
First, some of these questions are hard to answer. I can tell you MY opinion on them but none of it is really concrete. I’ll try though
Yes, this can occur anywhere in the body. Most likely your daughter only has ONE as they are typically just glitches during fetal development. But some people have certain syndromes which are hereditary, have AVM/VM components are part of the manifestation, and can cause multiples. It’s highly unlikely but possible. I would suggest consulting with another neurologist to at least get an MRI done to look for signs of a brain AVM. Prob not the case, but because of the VM it’s something to at least rule out, right?
I would take her off birth control. As much as it sucks, hormones in general can cause these to increase. You’ll find that many people (especially us no-brainers) end up seeing a surge in growth due to hormonal changes like puberty, pregnancy, etc. The birth control pills could have a negative impact.
It’s hard to say what is the right move for you. Embo’s are pretty common for extremity VM’s. I would say that before you even have a list of questions, you should first find a QUALIFIED doc. These are still rare. Doctors may “know” of them but if it isn’t something they treat regularly I wouldn’t feel that they were competent to give her the right care. I always throw out the anology of a professional stylist as opposed to a beauty school drop out. Sure the second probably can cut your hair just fine. But don’t ask for the cut/color/style combo or you are going to end up with an uneven/wrong color/not what you wanted kind of cut. Practice makes perfect right?
Check out our extremity sub group. Talk to some of those members. Search the member tab for words like “arm” or “hand” and read about the treatments that those members have gone through. A couple people off the top of my head are Lauren and Crissy. I know there are many more but start with these two ladies and see what bread crumbs you can follow!
Good luck. Let us know how else we can help!