As many of you know, we took Gio to the Mayo Clinic to see if we could get any more answers: why had the diet stopped working, why was he gaining so much weight, why had the seizures gotten worse? After fighting to get there then fighting on the way there with insurance and Mayo (who wanted $12,500 as a deposit for tests) we got there and spent a week in Rochester.
First things first...Rochester sucks it. Sorry people who call that home, but that place is a hole.
Regardless, the "Mayo Experience" was not that exciting. There's lots of glamour associated with Mayo, but...really...just another hospital. I guess if we had been the King of Jordan and had flown in on a private jet and gotten king treatment, things would've been different. But, we were a number and cash for a hospital.
The neurologist was fantastic and spent more than 2 hours with us and Gio and was genuinely interested in his case. She had ordered a battery of tests for which included an MRI and spinal tap and other things. We also met with a dietitian to discuss the diet and why it might have stopped working.
Gio has gained A LOT of weight. Frankly, he looks healthier now, but the diet is supposed to trick the body into thinking you are starving - calorie limitation with high fat. In 8 months, Gio has gained 20 pounds. That's a problem for the ketogenic diet.
What I didn't like about the dietitian...Gio had a seizure in front of her as she was preparing to leave and she flew out of there like a bat out of hell. I as thinking, "Lady...you are a dietitian trying to stop seizures...you should watch to see what happens to these kids!"
The last day, Gio had all the tests which required sedation from 8am till 1pm. This is where I was impressed: even before he was out of sedation, the neurologist called us back to her office later in the afternoon to discuss the MRI. Wow...no waiting!
In short, the MRI showed something wrong in the spot where Gio had surgery 5 years ago to destroy the cyst that was growing in his brain. It appeared to be a mass out of place where the amygdala should be. The doctor said she couldn't even see where the amygdala on that side of the brain was located. I brought up the fact that 3 years ago in a scan, the doctors at UW had seen this and decided that the mass was the amygdala pushed into the wrong location by the cyst and that they couldn't determine if removing it would even help with the seizures since his seizures were generalized and all were not starting from that part of the brain. (I know I'm getting technical here...but bear with me)
She disagreed with all the doctors at UW and said it was a hemartoma...well, folks, that's a tumor.
While benign, it's location could be the cause of the weight gain. The pressure could also be the cause of his seizures. But...she needed to see all the other MRI's done by UW since 2006 and needed to show this to all the neurologists at Mayo. But she was pretty confident. A week later, she called us back and told me on the phone that it was what's called a hypothallamic hemartoma. Go and read what it is...it's easier.
She believed removal was the best option. At this point, the UW doctors were clamoring to see the Mayo clinic MRI.
We got a call to come see our neurologist at UW Yesterday (Tuesday 9/20).
This is where everything went wrong.
Our neurologist here discussed the Mayo Clinic findings and said that there's certainly a 50/50 chance surgery would help Gio. But, all the neurologists and neurosurgeons at UW would need to get together and discuss these latest findings and decide. Charlotte and I started crying because it was happening again...brain surgery. Then, his nurse came in and handed a note which said our neurosurgeon was coming, please wait. Apprently, he had seen that we were on the schedule and wanted to talk to us.
About 5 minutes later, in comes our neurosurgeon in surgery garb...just out of surgery. We haven't seen him in years, but this man has followed Gio's case since day one, has been in my son's head and has been keeping track of all that happens with Gio. I had already decided that if Gio said surgery could help and this neurosurgeon would do it, we would do this again. He is an accomplished neurosurgeon, well respected in the entire country...a calm man who cared for our child as if Gio was his own.
I will never forget what happened next.
"The Mayo Clinic has done this to me before. We did a scan three years ago and this is the amygdala. It is not a hemartoma like they are suggesting. They are wrong. Let me show you." He goes to the computer and put Gio's first MRI up on the screen with the cyst in 2006 and the one from last month right next to it. He shows us that the mass being pushed is the amygdala and the mass now is the amygdala in an odd shape and place, damaged by the cyst.
"I went into your son's brain. I took pictures and will find them and email them to you and to Mayo to show them that this mass is the amygdala and that removing it will not do anything to help your son's seizures. I know what I saw. Look...I'm a surgeon and never give 100% certainty on anything...but I am telling you right now, I am 100% certain that removing it will do nothing. I am sorry."
That's really important...surgeons like to play God. They save lives. He could do this surgery and change our son's life forever, write a book about it and be famous, millionaire...but he's not. He's not going to play the surgeon/God game. That's about as honest as a surgeon can get!
Instantly, we are back to no answers...back to medicines trying to stop these seizures. Back to watching our child trend backwards in development.
Now, there's still other doctors looking and there could be a majority of doctors who disagree with our neurosurgeon. But, at what point are we just fishing for an answer we want rather than the answer that is right?
