Hello everyone! It's been a couple years since I have been on the site. We decided to re-treat Ashley's AVM since it hadn't shrunk further in the past two years. And again, she has developed some severe side effects post treatment and we are not sure if it is due to the radiation or the steroids. She has had severe burning and shooting pain in both of her feet, this has been pretty much constant since the day she discontinued the steroids. Due to the extreme pain she has been unable to sleep unless her feet are in a bucket of cold water, needless to say she is only getting an hour or two of sleep at a time. She has been off work since the end of July. We have been having tests done at Mayo clinic in MN and the results so far are small fiber neuropathy, large fiber neuropathy and autonomic neuropathy. We meet with the neuro dr there again Oct. 3rd(first appt they could get her in). Just wondering if any one else has experienced this and what if anything worked for you?? It's so hard to watch your children/loved ones suffer day after day....thank you for any help!
I'm so sorry to hear about Ashley's pain -- that must be so frustrating for all of you. This sounds a lot like central pain syndrome (http://pain.about.com/od/typesofchronicpain/g/central_pain_syndrome.htm), so you may wish to friend moderator Patti, who is an expert on the subject (http://www.avmsurvivors.org/profile/PattiG). I don't know where you are located, but I suggest you seek a pain clinic or pain specialist who can help you explore solutions. Keep us updated.
thank you dancermom, I will give that a shot!!
Denice...I had something very similar to that years ago. May I ask, does your daughter smoke? Not sure if I'm spelling this correctly, but look into Berger's disease. I had to take steroids for 7 days and quit smoking. The lack of oxygen to my feet was causing this from smoking. It worked like a charm. I was up soaking my feet in ice water too every night for a couple months before my doctor figured it out. What was happening was, the blood vessels, when warm and open would hurt really bad and the ice water closed them down. Just a thought.
D & D, Fortunately Ashley has never been a smoker, but I appreciate the input. We are hoping a pain management clinic near home will be able to offer us some help!