Hi all, I was diagnosed just over a month ago and really need to get a treatment plan going soon. I was looking to compile a list of top doctors in the following areas:
Gamma/Cyberknife
Embolization
Craniotomy/resection
It would be even more helpful if they were more specific to my particular case which is a left frontal lobe 4x3cm AVM near the motor cortex. Also, I live just a bit south of San Francisco.
Any help is greatly appreciated, thanks!
Sgomez, you could wind up really baffled if you pursue opinions for all three treatment options at once. I can imagine gamma drs telling you gamma is best, IRs telling your embolization is best, and surgeons telling you to go for craniotomy. If you start with Steinberg or Spetzler or a dr. at Hopkins, I think they will explain to you their feelings about the pros and cons of all the treatments for your particular case. You will probably wind up with a gut feeling about which one you want to go with. More than one opinion is good, but a whirlwind of opinions may be paralyzing. Just a thought.
Also, the best treatment also depends in part on your personality. How well will you tolerate waiting the two years it may take to see if gamma is effective? How do you feel about the idea of the AVM still being inside your head, but sealed off with glue? How fearful are you of brain surgery? and so on.
I wish you the best! I'm sure it's not easy...
I would recommend Dr. Robert Harbaugh @ Penn State. He performed my craniotomy in 2001 and my diagnosis was that I would have vision loss and need speech therapy; I had neither - my surgery was very successful, I had surgery on a Thursday and I left the hospital the following Saturday. At that time he worked at Dartmouth Hitchcock in Lebanon New Hampshire. He was not only a consummate professional but a caring human being who pulled no punches but treated me as a whole person not just my AVM. He has even gone above and beyond in the years following to recommend to our family, Dr's. to treat my daughter's scoliosis. He truly is a hero in our family's eyes.
I like that idea. I had two neurosurgeons tell my that surgery was too risky but too large for radiation. Then you move onto embolization but there are not many doctors listed for this. They seem to work under the neurosurgeon.
I think asking several places their line of treatment and then seek out who is good in that area is not a bad idea.
Yep, he's really good. Sad that he isn't still at DHMC.
Sounds like we have similar AVMs. Mine is roughly 4.5 cm x 4 cm in my left frontal lobe bordering on my motor cortex. It was discovered in 1982 when I was a teenager (I'm now 49) when I had a tonic-clonic seizure. Back then, the drs did not recommend any treatment except for waiting and watching since they were concerned that I would have severe right-sided deficits. Well, that probably wasn't the best approach after all! I had a small hemorrhage in September 2012 during a morning work-out swim. I had mild right-sided weakness in my arm and leg which resolved in about 4-6 weeks. I'm now back to my old self again.
I immediately started sending out packages (cover letter with brief AVM history, DVDs of my latest MRI, CT and angio) to the following top notch neurosurgeons:
Dr. Robert Spetzler, Barrow Neurological Institute (Phoenix, AZ)
http://www.bnaneuro.net/Spetzler-Bio.html
Dr. Neil Martin at UCLA (Los Angeles, CA)
http://www.uclahealth.org/body.cfm?id=479&action=detail&ref=10004
Dr. Michael Lawton, UCSF (San Francisco, CA)
http://neurosurgery.ucsf.edu/index.php/about_us_faculty_lawton.html
Dr. Christopher Ogilvy, Massachusetts General Hospital (Boston, MA)
http://neurosurgery.mgh.harvard.edu/ogilvy/
Dr. Duke Samson and Dr. Hunt Batjer at UT Southwestern (Dallas, TX)
http://profiles.utsouthwestern.edu/profile/16354/duke-samson.html
http://www4.utsouthwestern.edu/swneurosurg/html/batjer.html
All of the these doctors passed on surgery for my AVM (too big and complex), except for Drs. Samson and Batjer. The other doctors referred me on to other neurosurgeons specializing in some type of stereotactic radiosurgery:
Dr. Michael McDermott at UCSF, neurosurgeon specializing in gamma knife stereotactic radiosurgery (one of the best)
http://neurosurgery.ucsf.edu/index.php/about_us_faculty_mcdermott.html
Dr. Nadar Pouratian at UCLA, neurosurgeon also specializing in sterotactic radiosurgery (CyberKnife)
I had telephone consults with most of the drs but went to see Dr. Michael McDermott at UCSF and Dr. Samson and Dr. Batjer in Dallas. If you can, I recommend going to see the doctor in person for their recommendation vs. a telephone consult. While a telephone consult provides you with good info, I think it's good for both the doctor and the patient to assess each other, face-to-face.
I now have to decide what to do as I have the following options:
1) No treatment
2) Stereotactic radiosurgery (gamma knife or hypo-fractionated radiotherapy using the CyberKnife)
3) Embolization and craniotomy
Essentially, those are all of the main ways to treat an AVM so I have to pick one(!)considering all the benefits and risks involved with each approach. I agree with dancermom's comment about the treatment choice depends partly on your personality and what you are willing to put up with.
It's sure isn't easy making the decision. Hope this info was of some help.
Did they say the could do gamma knife or fractionated radiation without embolization? My first doctor told me that was not an option. I am waiting to hear from others.
How much did the consults cost you to send the records?
In response to ksucat’s question, the doctors that I talked to about my AVM did not want to do embolization with any sort of radiation treatment. There are some studies which suggest that embolization combined with radiosurgery isn’t that helpful.
The doctor telephone consult fees vary. They are not covered by insurance. I paid $100 - $250 esch depending on the doctor.
My doctor told me that at first but then said radiation at that size would cause too much damage to surrounding brain tissue. Would be better to embolize first.
I am seeing Dr. Samson Tuesday so will get opinion number three.
Robin
Hello SGomez,
FYI: I had an AVM and went to UCSF to do a Gamma Knife. The Gamma Knife procedure was not successful as the capillaries that were supposed to be destroyed were still intact and ruptured several years later. I recovered luckily after a doctor at another hospital performed surgery. I can't remember the name of the UCSF doctor who performed the Gamma Knife, but Iknow my doctor was NOT Dr. Michael Lawton.
My niece is being treated at Stanford. Surgery tomorrow. Pretty good place. Call me if u want to talk 510-■■■■■■■■
Chris Somers
sgomez11...There is one more treatment not mentioned. Proton Beam Radiation. I'm sending you information about it. I had Proton Beam Radiation at Mass General Hospital. They have it at Loma Linda, which is near you.
http://www.proton-therapy.org/UShospitals_191A.pdf
If you have any questions, please feel free to ask me.
More information to help you re: Proton Beam Radiation
Loma Linda
http://www.protons.com/sem/arteriovenous-malformations.html?type=se...
Mass General
I had a craniotomy in January of 2012. My surgeon was Dr. Andrew Chenelle at Central DuPage Hospital in Winfield, IL. A long ways away, but he did a great job, & I’back at school already. Also, I think my hospital had a good embolization team as well.
Hi
Your AVM Is In The Same Place Has Mine.Im In The UK My Surgeon Is Mr Tolias At Kings College Hospital In London.You Can Look Him Up On The Internet.
Best Whishes To You
Crystal
Hi LPF, thanks for your response... do you know why they suggested Gamma Knife as oppposed to CyberKnife?
Hi SGomez,
The doctor recommended and performed a Gamma Knife because he is (supposed to be) an expert at Gamma Knife.
I am not familiar with the Cyber Knife procedure so I can’t comment on its advantages/ disadvantages.
Cheers,
Leland
Hi Louisa, thanks for your reply. Proton beam radiation sounds really promising. May I ask what size your AVM was? Was your treatment completely successful? Due to the large size of my AVM my treatment options are relatively limited but proton beam radiation seems to have the least amount of negative side effects
Due to my AVM's size (small) and location (far back towards the left lateral sinus), my only chose was to have Proton Beam Radiation (with beads included), by Dr. Paul Chapman, at Mass General in Boston, which was performed on May 22, 2007. Dr. Chapman put in three beads exactly in my AVM area (which they will not ever remove), for the radiation to go to the perfect spot.
From reading what other members say about their treatments, I have to say I had no side effects from the PBR. Once you have the treatment, you have to wait 2 years for the radiation to remove your AVM. During my meeting with the MGH doctors, I was told that I had a 90% change I was going to have a brain bleed, which happened... I had a massive brain bleed (which was about to happen regardless) six months after the radiation...But 2 years after the radiation, I was AVM Free and no longer need to worry about having another bleed. Now I was 57 when I had the bleed and as I said there was high risk of me having a bleed with or without radiation. I hope I'm explaining this correctly...if you have any other questions, please feel free to ask.
Can you explain the risks of a bleed to me? I thought that brain bleeds are usually fatal - is it possible to catch the bleed if you're expecting it, in order make the chances of permanent damage (or death) much less? How did you notice and take care of your brain bleed? Is it a really specific feeling?
Thanks for your help