BNI is located in Phoenix, AZ and is a world renowned neurosurgical center. In fact, it is the world's largest neurological disease treatment center with 11 dedicated Neurosurgical Operating Rooms performing about 100 surgeries a week. Yes, 100 brain surgeries a week on patients from all over the world. To top it of, AVM's grading scale, called Spetzler-Martin scale is actually named after BNI's Director Dr. Robert Spetzler.
So when it comes to AVMs, BNI's opinions matter a lot and I was pleasantly surprised to find out I can have all that world class consultation for just $100 via their remote second opinion program. All I had to do was fill out a short form online and upload my MRI images.
I immediately signed up and uploaded my MRI images. Within a few hours, someone reached out and asked for my MRI report and Visual Field Test report. I scanned and emailed them right away and waited to hear back.
In less than 24 hours, I had my report in my inbox. It was short, but not sweet. Here it is:
"I would recommend treatment given the fixed neurological deficit (left quadrantinopsia). The optimal treatment would be preoperative embolization (which I would do) followed by surgical resection (by Dr. Spetzler). If you would like to be seen in consultation and have your surgery at Barrow Neurological Institute, please contact Stephanie at 602-406-xxxx to inquire about arranging an appointment. We would be delighted to be of help in any way possible.
Sincerely,
Felipe C. Albuquerque, MD"
I thought about it for a night and realized I was not ready to give in either way yet. So, I sent them an email about my local neuro's recommendation against any treatment and asked BNI if they wanted to review my angiogram images and make another recommendation. Instead of asking for my angiogram images, I got this email back form BNI:
"The surgeon that reviewed feels that risk of surgery is minimal compared to the risk of a rupture. He feels you should have embolization and then surgery. The doctor used the imaging you had prior and has recommended surgery. If you are interested in coming for treatment, please let me know."
So, all I have now are 2 very conflicting recommendations to chose from. Confused, I again sought help at the AVMsurvivors forum and posted my predicament there. Got several responses in a short period.
- One was skeptical about the local surgeon's recommendation to not treat an "operable" AVM
- A few simply asked me to put my faith on BNI's experience and reputation
- And others suggested getting another opinion (apparently this is very common)
Given the high risk either way, I have decided to seek another opinion to break the tie. But I want to do this in person and at a very reputable institute.
After a quick research, I zeroed in on Johns Hopkins Hospital in Baltimore MD. I chose this for some obvious reasons
- It had been ranked No. 1 hospital in US for 21 consecutive years by US News
- Its Neurosurgical practice has been ranked consistently among the top 3 in US and
- More importantly, it is drivable from my home in Richmond, VA
And a (doctor) friend who used to work at Johns Hopkins recommended I consult with Dr. Rafael Tamargo. I looked him up and quickly realized he is one of the premier neurosurgeons in the whole world, especially in Cerebrovascular Neurosurgery.
So, Dr. Tamargo and Johns Hopkins it is. I will leave my AVM alone (and hope it will leave me alone) or get it treated based on his recommendation. But the earliest appointment I could get was for mid November. Too bad, patience is not one of my virtues.
But I have something else to look forward to next week. I am flying back home for a week and I will finally let my wife know about this mess. So far, only one friend and one of my brothers know about this. I desperately wanted to tell my wife several times (especially when I went thro' the cerebral angiogram procedure all by myself), but I just couldn't do it over the phone. So there is going to be some drama next week :)
