I have an appointment/consult with Dr. Alexander Khalessi, a neurosurgeon, at UCSD today for my AVM in my left temporalis muscle. I also plan on getting a second opinion from Dr. Suen (who is very hard to get a hold of) and possibly Dr. Yakes.
I was wondering what kinds of experiences my fellow face and neck AVMrs have had with neurosurgeons? Have any of you received treatment from a neurosurgeon? What kinds of diagnosis or options did they provide to you?
This is my second extracranial AVM. My first one was removed from my neck in 2002.
I appreciate any and all of the feedback that anyone can provide.
I have multiple AVMs that become active,but one of them is in my cheek. My experience with neurosurgeons in upstate NY has been terrible, because they are too afraid to touch them.
Hello SalBella, my AVM was in my posterior medial right parietal lobe. Though not like yours, your question was about our experiences with neurosurgeons. I'm among the very fortunate of my AVM brethren in that I live one mile from Barrows Neurological Institute in Phoenix, Arizona. Dr's Joseph Zabramski (Dr Z) and Carl Greene (a neuro resident at the time) were exceedingly helpful. Having no appealing options other than surgery, or do nothing and one day it will hemorrhage, I chose surgery since I was relatively young (30 years old) and was in peak physical condition. Went under the knife on a Thursday morning, woke up Saturday afternoon, went home Sunday. The surgeons answered all my questions before & after surgery. And for nearly a year I would call or stop by BNI to discuss my recovery. I wish Google, and this forum, were around during this time. Would have had much easier access to support and information. Finally, what helped me the most what this: get in your mind that there is no other option, none, but to get better, to get back to your pre-AVM life. It's so easy to fall into the depths of depression and just feel there's no hope. Don't. You're surrounded by love of your family, friends, and this unique group of caring people, all of whom know exactly what you're experiencing. Stay positive and reach out to us.
Hi SalBella - I am a 54 years old British male based in London, born with AVM on cheek and lip since birth. Of course as you know, as a nonprofessional, I cannot really professionally recommend surgeons and as mine is facial AVM, I have no experience with neurosurgeons. I know that Dr. Suen is highly respected in treating head and neck AVMs and other vascular anomalies - not sure if he has neurosurgery as a specialty - and sorry he has appeared hard to get hold of. As encouragement, my experience is that he has been approachable. Let me know if you still cannot reach him and I will try to help to get you in touch. I would have liked to be treated by Dr Suen but the organisation who financed treatment had already arranged treatment with the New York team, Dr Milton Waner, surgeon who treated me(who achieved approx 25% - 30% cheek bulk reduction). His treatment plan was guided by Dr Berenstein's (Neuro/Interventional Radiologist) MRi report. As your left temporalis muscle is involved, I know that Dr Berenstein, along with Dr Darren Orbach (Neuro/Interventional Radiologist) Boston Children's Hospital and Dr Patricia Burrows, Interventioan Radiologist, Children's Hospital Winconsin have vast experience, expertise in treating AVM's in these facial/head regions. Maybe, if you would like further opinions, you could contact them, ask if you can send/email your MRi/MRA/scans films/disk etc and ask for their opinions on condition, treatments and maybe also on neurosurgeons too...etc.
My best wishes SalBella. Please do not hesitate at all with any further questions as happy to try to help. Soteris
SalBella, I am 60 years old and have AVM in the right side of my face, neck, jaw and ear. It also affects my chin and lower lip and the inside of my mouth and tongue. If you see my story on my page you can read about it as I had my first major bleed at age 11 if my memory is serving me right tonight. In recent years I have been seeing a neurosurgeon at KU Medical Center in Kansas City where the surgeons used surgical glue called Onxy injected into the various feeder vessels in my face, neck, chin, etc. Two years ago this summer they repaired an anuersym in my left jaw along with an AV-shunt by filling each with the glue. It is extremely painful for the first several days and gives of an awful odor(no one wanted to come into my hospital room because I smelled so bad from the glue). Anyway, I am doing OK, although I still have a lot of pain and discomfort from it and realize I always will. However, I am able to deal with the pain through the use of opioid I take twice a day (morphine), it enables me to cope! Hope this helps, I will keep you in my prayers!
SalBella, I live in San Diego and my neurovascular surgeon was Dr. Rene Sanchez through Scripps Clinic. He and his team were awesome and I hear they have a very high success rate in treating AVMs. I was diagnosed just last December 2015 with AVFs on both sides of my neck. They were able to treat them with coil embolizations over the course of 4 angiogram procedures (I had 6 on one side and 3 on the other). The ICU nurses were all so great. Their kindness and competence really made the experience so much better. Hope this helps and feel free to ask me any specific questions you may have. Martina.
Hi I had surgery at UCSD back in October my neurosurgeon was dr. Hoi sang U. I’m afraid my avm was inside my head so im not how much I can help but I can Say that my stay at the hospital was short but pleasant and If youd like I can give you his info or other Dr’s in the area I’ve seen if I can help in any way i will.we are all here to help each other
Hi SalBella. I am in SD area as well and I am being treated at Scripps La Jolla. My doctor is Dr. Sean Pakbaz. He is Interventional Radiology rather than neurosurgery, but he is amazing and he knows Dr. Yakes very well also. I highly recommend him to you. I actually got my initial testing, imaging & diagnosis from a neurosurgeon on the east coast. However my case is very complicated (I can send you more info if you want to know more), so they weren’t sure how to handle it and I knew I would be moving (to SD) and was not going to be there long enough for them to treat me. Once in SD I was seen by an IR doctor at Naval Hospital Balboa, who referred me to Dr. Pakbaz.
This is my third AVM and all have been left facial - first when I was 4 years old in maxillary sinus, then when I was junior high/high school age behind my left eye orbit, and now in my 30’s in my cheek and affecting sinus and hearing in my left ear. All my treatment for the two bouts when I was a kid were in other places (Indiana & San Francisco).
I have had a series of treatments with Dr. Pakbaz since February - combination of angiogram and direct puncture, and use of glue in most areas and alcohol in some. He is planning to work with a plastic surgeon for mass removal soon when they have enough embolization done. Please feel free to contact me if you want to know more or have any questions. I hope this helps and I wish you all the best with your search.
the UCSD team is the group of doctors that are treating me. Dr Carter the head of the team saw me 1st and referred me to Dr. Khalessi who did the angiogram. I can't say enough about either one of those doctors. Excellent is not enough. For me they are the best. After the angiogram Dr. Khalessi recommended that I have radiosurgery as a 1st option. Dr Carter agreed to that and Dr Khalessi referred me to the radiologist. She was also excellent. She worked with Dr Carter to plan the treatment based on the angiogram and MRI. I did my radio and during my follow up a year later (last January) my AVM has shrunk by 42%. They all seem very excited.
Thank you for sharing! It’s so reassuring to know there are competent doctors here in SD to deal with this. I saw Dr. Khalessi yesterday and he seemed very knowledgeable. His resident said he has seen hundreds of facial AVMs and didn’t seem remotely hesitant in treating them. Dr Khalessi said they work with an entire team of doctors [including ENT and plastics and others] to treat them.
Dr. Khalessi also thinks I might have been misdiagnosed and I have a VM and not AVM so he scheduled an angiogram to learn more. Hoping that’s true! Both my CT and MRI say AVM and so did my surgeon in 2002 that removed my neck one…
I would love the contact information for your doctor at Scripps. I’d like to get another opinion also.
So amazing to hear Kosta! My husband and I really liked Dr. Khalessi! He also told us about UCSDs team approach to all cases. Makes sense since it’s a teaching hospital. My husband is also a UCSD alumni so he’s on board!
I’d like to hear more about your case. What kind of AVM did you have? I’m curious to see how many face and neck people are out there he’s helped or assisted in helping. Did you get a second opinion? Where did you go?
Dr. Khalessi also thinks I might have been misdiagnosed and I have a VM and not AVM so he scheduled an angiogram to learn more. Hoping that’s true! Both my CT and MRI say AVM and so did my surgeon in 2002 that removed my neck one…
I specifically requested an appointment with Drs Carter and Khallesi after I asked a few people around San Diego. Initially I had seen a Doctor at Scripps in La Mesa who reviewed the initial MRI and suggested an angiogram but before doing that I found out about the reputation of UCSD and went there. I am also in science and I know a few things. Dr Khallesi has a great reputation specializing in AVMs. Mine unfortunately is inside the brain right parietal next to the centers for sense and motion. Size at the time of angiogram was 2.8cm diameter. Dr Khallesi did the angiogram and suggested with 100% confidence that if it was him he would have done radiation. He referred me to radiation oncology at UCSD and from what I know they planned together the treatment. Last January a year after the radiation treatment the size was down 42% to 1.6cm diameter. The doctors think that its great because the radiation treatment is very slow and sometimes in 1 year you do not see as much change as they saw in mine. Good luck to you and contact me if you have any questions. I think you are lucky to have AVM outside of the brain instead of inside. We are all trying to do the best and make the right decision while hoping for the best.
