Please someone help me with a good Doctor in The philadelphia region for an Extremities AVM

Hi everyone, I am new to this page. My Name is Stacey and I have an AVM of the right masseter muscle on my face, it causes my cheek to be swollen to (pretty much triple the size) of the other side of my face and extremely painful. I have had, as everyone else a long and undending road searching for treatment that helps, it didnt get diagnosed correctly for years, before it was too big they were telling me that side of my fae was bigger because i was grinding my teeth, (but only on the right side, right??) I initially had it injected with 90 cc’s of Botox!! to no avail of course but it did take the pain away for a while, this is before i/we knew it was an avm… Anyway about 6 years ago i finally saw a competent maxillofacial surgeon who said " this is a pulsating mass, i believe you have whats called an AVM" and with those words there began the hell that most of us go through with these monsters. Why Isn’t more research done? I just don’t get it. Why can’t they come up with something like the Gamma Knife for extremities avms?? i know they are difficult to treat but c’mon!! Any way I started by getting referred to this “great” interventional radiologist at Hahneman University in Philadelphia (very Reputable facility, by the way) and he embolized twice with glue and coils and would never return my calls again after the 2nd embolization to set up more appts. I think he felt over his head or something, I don’t know. I then started to search for other facilities and Doctors, and most had only treated, “brainers” sucessfully. Then i started doing serious research. Came in contact (through Sweet Shalon) with the wonderful Staff at Doctor Yakes office in Co, for those of you who don’t know he pioneered the ethano;l alcohol embolizations and has had success in actually CURING avms. BATTLED with the insurance company to prove “medical necessity” and have payment approved to see an out of network doctor, they initially approved a single case agreement to pay for 85% of billed charges,Had three treatments there, thinking i was on the road to possible improvment (even though its only gotten bigger since starting the treatments) i couldn’t initially go out every 4 weeks as suggested. I had to wait for my FMLA to kick in at work, and now, just as it has( I had to wait until i was employed a year) MY insurance BLUE CROSS, has bailed out on me and says they no longer negotiate with out of network doctors, not part of their policy anymore, So basically they are saying they initially approved Medical Necessity, but Tough!!we don’t care, not paying anymore. SO , Kids, Im back to square one, i now know they have an avm clinic At CHOP, Childrens Hospital Of PA, but im sure they are mostly familiar with brain avms, and I’ll be getting my face filled with glue and coils again!! I currently have an advocate from my employers HR department trying to get the situation overturned with Blue Cross to get them to get them to pay for Yakes, but i don’t expect it will be quick or easy, as none of this journey has been, Im praying and keeping my fingers crossed, which ever works!! LOL . ANYWAY does anyone have any succuss stories for external AVM treatment with CHOP??? PLease let me know. THANKS FOR LISTENING GUYS!!

Not sure if he handles your type cases but call Dr. Rosenwasser at Jefferson…man saved my life and if he can’t help, let him recommend smeone. Good luck, God bless. Mare

Thanks Mare, I looked over his profile, it does look like he definately specializes in the brain and spinal chord, but it definately wouldn't hurt for me to give his office a call, and CONGRATS on your success, its always good to here that!! God bless and thanks for the suggestion!

Stacey

please let me know how it goes…he is the best! God bless. Mare

I agree with Mare fall Jefferson Dr Rosenwasser is they best & I’m sure somebody on his team can handle your issue if not they may be able to steer you in the right direction.Here is the phone number 215-■■■■■■■■ or call 1-800-JEFF-NOW