Extracranial AVM Left Temporalis Muscle

Don't apologize. I was really relying on every word in your post. I totally agree. Their is a cosmetic VEIN CENTER here; I communicated with that MD before I found my specialist online. (extremity AVMs) It is astonishing that the venologist was willing to take me on!! Another local IR called me and admitted this was out of his league, referred me to Rosen. I totally respect that; I personally referred many friends to the local IR when they had fibroids and needed OAE>

Hi SalBella - I am an extremity survivor myself (tongue AVM) and it was definitely challenging to get someone to even diagnose me correctly. I live in southern Calif and I had to go to Little Rock, Arkansas for treatment/surgery. If the AVM is on the outside of your head, you need an ENT/otolaryngologist, who specializes in AVMs. My doctor, Dr. James Suen in Little Rock at UAMS, is quite familiar with AVMs on the outside of the head. You may want to check out the doctors list on the top of the main page and look for extremity doctors. I am not sure if a Neuro Doctor will understand your condition, so please make sure you ask about their experience in treating AVMs. Feel free to contact me if you have any questions on what I wrote here. Just remember that you MUST find a doctor with experience in extracrainial AVMs. Hang in there.

Thank you Debra!

Dr. Suen's name has definitely been thrown around a lot on this site. I will look into getting an appointment with him. I have no obstacles preventing me from traveling to Little Rock for stellar treatment. I feel very lucky in that respect.

You mentioned you were from So Cal. I'm assuming you looked into treatment here but didn't find any ENT/otolaryngologist specializing in AVM.

You have no idea how lucky you are because you live in a rich country and you have the option of quality treatment and choice of doctors and clinics. For us such treatment is a fairy tale. My only hope is the help of God. I want this nightmare ends.
For each of you I wish you all the best.
Mother of Dunja

Yes, I did SalBella and I did not find any. It's hard enough finding a Neuro who knows about a brain AVM and unfortunately, extremity AVMS are even more rare. I can't stress enough the importance of going to a true expert in AVMs. Maybe there are some, and they just aren't well known. I asked every doctor how many surgeries they had done and believe me, most had not done too many, except for the true experts. You can also send him your scan with all of your info and after reviewing it, will tell you his prognosis. Btw, I have been AVM free for almost 6 years, since my surgery with Dr. Suen. So, you are correct, it is possible to be AVM free or at least keeping the AVM at bay. Let me know if you need other info :)

Try sitting up when sleeping.to answer your question. The lump was bigger because laying flat does not drain blood. See if a TV-watching kind of pillow would work.

Belive in Serbia doctors they save my life two times,when i think thats over and i was feel like that,in Belgrade are good neurosurger doctors,can u tell where is ur daughter tretment is

Draga Radmila, drago mi je da si uspela. Želim ti svu sreću ovog sveta. Na žalost moja ćerka ima drugačiju vrstu problema. Njene AVM, a trenutno ih ima 4 su u donjoj polovini lica i vrata. Već 3 meseca nas odlažu sa embolizacije na Neurologiji KCS. AVM lica i vrata su mnogo kompleksnije i složenije od onih na mozgu, jako brzo rastu, mada ne ugrožavaju direktno život. S obzirom na njenih do sada neuspešno urađenih 7 operacija sumnja u lekare vrlo je velika. Njoj je potreban odličan interventni radiolog da pokrije, tj polepi celu donju polovinu lica, kao i vrat. Posle toga je čeka takođe vrlo složena operacija na VMA, od strane maksilofacijalnih hirurga. Ima svega 17 godina, katastrofalne posledice operacije, izgubljen sluh na desnom uvu, odstranjen deo vilice, delimičnu parezu lica, samopouzdanje minus beskonačno... Ako želiš možemo stupiti u kontakt. Srdačan pozdrav

Ja sam kao dete 11 god operisala avm na mozgu sa leve strane saznala sam tako sto su vene ili sta vec popucale i tad je sve uklonjeno u beogradu operativnim putem,imala sam kontrole 4,5 godina i pila lekove dok nisu rekli da je sve ok i da ne moram vise,prosle godine sam prezivela jos jedno pucanje takodje avm sa leve strane,u martu sam uradila gama noz nadam se najboljem ishodu,imam magnet zakazan za novembar ne mogu ga docekati...jako mi je zao sto cujem to za tvoju cerku mogu misliti kako joj je tesko al nek samo veruje nek ne pada izgurace to,sigurno zivi u strahu kao i ja i mnogi drugi ,pored toga unisteno joj je samopouzdanje,koji joj je lekar radio embolizaciju?POslacu ti u inbox mail i fb... Pozdrav

Look into birthmark.org for international help. The specialists travel to teach skills to MDs and RNs. Or they raise funds for patients to travel to US for care.Let me know.