First "Second Opinion"

Thanks again to AVMsurvivors forum, I learnt about Barrow Neurological Institute (BNI) and their Second Opinion Program.

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"

So, their choice of treatment is exactly the same as the one outlined by my local neuro - embolization followed by craniotomy. But she was against the treatment and BNI is recommending it.

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 :)

Maintain the Status Quo?

I visited my neurosurgeon this afternoon with the report and images from my angiogram. She said she had already reviewed them with the Interventional Radiologist and gave me the rundown.

Here is an actual image of my AVM from the angiogram images. The dark patch in the back of my brain is the AVM cluster (nidus).

First, the bad news:

• My AVM nidus (or the AVM nest) was actually larger than the MRIs had indicated - 5.9cm x 4 cm x 3.9 cm
• Remember I had mentioned in the last post about how the nidus was spread around a bit instead of being in a nice little clump? It turns out there is actually a term for it - Diffuse AVM. And mine was diffused quite a bit in my Occipital lobe.
• She said it is at least a Grade 4 AVM.
• Given its size and its diffused nature, she immediately ruled out radiation (Gamma Knife) as a treatment option.
• Again, given its size and diffused nature, she said the treatment, if it were to be done, will involve 3 or 4 separate embolizations (spread over as many months) and followed finally by a craniotomy
• And the craniotomy itself will be major surgery lasting several hours 
• And finally, with the treatment, there is 80% chance of me losing good portion of my left side vision

At this point, I was ready to stick my fingers into my ears and sing something loud.

Now, the good news:

• The speed of the blood flowing through the nidus is relatively slow, so the risk of bleeding is a bit lower than usual. 
• Given how messed up my nidus is and all the risks associated with every step of the treatment (each embolization carries the risk of hemorrhaging, vision loss, etc.), she recommended that I leave the AVM alone and not treat it at all. Do nothing? I can do that. 

In short, the risks associated with the treatment outweigh the benefits, so it is better to take my chances (and push my luck) with an AVM rupture in the future.

My feelings were mixed at this point. I was frustrated a bit since I couldn't get it treated,  I was relieved a bit since I didn't have to get it treated, and I was scared a bit since I will have to live with this in my brain for the rest of my life and it could bleed anytime.

And then she said something that, I felt, pushed me back to square one - 

"My recommendation is to do nothing, but you will find a lot of 'trigger happy' neurosurgeons who will encourage you get this treated soon. And don't think I am afraid to treat this, I just think it is better if you leave it alone"

Sigh. Thats when I realized she never used the word "inoperable". But I was glad that she was being honest and open about this. She advised me to get a second opinion and recommended another neurosurgeon (her mentor) in another Swedish hospital in Seattle.

So, now I will have to get another opinion (or two). But I am going to cast a wider net across the US and look for hospitals and doctors who specialize in treating complex AVMs.

Cerebral Angiogram

I went to bed around 11:30 PM last night, but woke up in a few hours around 3 AM. I was anxious and restless and my angio was scheduled for 7:30 AM. I think I slept for a couple more hours between 4 and 6.

I reached the Radiology Dept. at Swedish Hospital around 7:15 AM and filled out a couple of forms, and then a nurse took me inside. I changed to a hospital gown and laid down on a bed. After the usual things a nurse does, an IV line was placed in my left arm. Then the doctor (an Interventional Neuro-Radiologist to be specific) stopped by and explained the risks associated with the angio (risk of a stroke if the catheter were to loosen up any plaque in my artery, allergic reaction to the contrast agent etc.) and asked if I wanted to proceed. I was is no mood to say no to all the fun and poking.

Then the nurse rolled my bed into an angio suite (image below) and 2 others joined the fun (i think one of them was a radiology nurse). The 3 of them moved me from my bed and on to the fluoroscopy table. And they started prepping me - hooked me up to a few things including oxygen supply, BP monitor, EEG and put a sterile sheet over me. The whole crew was super nice and let me take a few selfies.

Then the doctor came in. (Nurse took my phone away :( )He first sedated me using the IV in my arm. It was conscious sedation, so I was awake but very relaxed. And then he injected something in my right inner thigh for local anesthesia. Ayyy.., now I was all set for the real poking.

According the report I read later, a catheter was inserted into my body through my right femoral artery in my thigh. And he pushed the catheter all the way through my abdomen, chest, and neck to the bottom of my brain. Then, he injected a radio-opaque contrasting agent through an artery and took a lot of images. According to the report, it looks he repeated the whole process for 5 more arteries that supplied blood to my brain.

He was done in about 45 minutes and bandaged my thigh and then I was rolled to a room in another building around 10 AM for some rest. I watched the 1998 version of the Godzilla movie. It was an awful movie, but hey, its a hospital.

The doctor stopped by around 1 PM and  gave me a sneak peek at the angio report, but I will talk about it more after I meet with the surgeon next week.

My friend came up to my room around 3:30 PM to pick me up.

Now comes the part I hate the most: Waiting.....  to hear my prognosis and especially if it is treatable or not.