Striking gold in California
Another surgery and new wave of hope
I’m having another neurosurgery this month to remove the remainder of my pituitary tumor, which, if successful, could mean I’d be rid of my Acromegaly forever.
I’ve known about it for a little while now but haven’t told too many people because telling people makes it real, and when it’s real, there’s hope. Hope is a beautiful thing and a dangerous thing. It can make you want to believe in an outcome that, in this case due to the limitations of medicine and science, may not be possible. But now I have no choice but to be hopeful, because there is a chance that sometime soon this particular health crisis could be behind me.
If you read my last update from November marking the two year anniversary of my last neurosurgery, you might be a little confused. I said that I was still feeling crummy, administering on myself bi-weekly injections that weren’t helping much, and doctors had a hard time providing a clear roadmap because they couldn’t even reach a consensus on my hormone levels or whether my tumor was growing. It was a mess, and I was a mess. But in that same update I mentioned I’d scheduled a virtual visit with an endocrinologist in California who my dad had found through his tireless research to find a solution for me, and that visit turned out to be something of a miracle.
At this point, I’ve gotten pretty good at sizing up doctors from a first impression. And my first impression in my visit with the endocrinologist in California, Dr. K, was very good. He was warm, listened intently to my story and didn’t rush me as my parents and boyfriend sat and listened off camera. And when it came time for him to give his assessment of my case, he suggested something that hadn’t been suggested in any serious way in the last two years: another surgery.
To understand why doctors didn’t think I was eligible for another surgery, I’ll need to get into the Acromegaly weeds for a moment. Bear with me. When my original surgeon attempted to remove my entire pituitary tumor in November 2018, a small piece of it was left behind. That’s because it invaded the medial wall of the cavernous sinus, which separates the pituitary gland from the cavernous sinus. Dealing with this area is risky because your carotid artery is in there and controls blood flow to your brain. Very important and not something to be messed with — unless you have the proper technique, which, as of early December 2020, I didn’t know existed.
(You can watch the great video my doctors did about the technique here, if you’re so inclined.)
From Dr. K’s perspective, it looked like the location of my residual tumor was not too deep into the cavernous sinus and that I could be a candidate for surgery using a new technique pioneered by his colleague Dr. F, a neuroendocrine surgeon, along with an ENT surgeon (since they enter through the nasal cavity.) The technique (in the simplest terms possible) involves safely removing the median wall in order to remove the residual tumor. And no more tumor means no more Acromegaly, no more injections, no need for radiation. I wanted to believe, but I was reserving the celebration for when Dr. F confirmed. I’d been sold a bill of goods before.
But sure enough, the following week in a virtual appointment, Dr. F echoed Dr. K after reviewing my MRI images: I was a strong candidate for the surgery. Whereas the last surgery I had results in 50–60% success for patients, this new technique has yielded a 94% success. Dr. F was clearly an innovative and caring doctor, I got a great feeling from him, and his online reviews were unmatched. One patient wrote, “He made me feel comfortable and unafraid with what he had to do. I feel God was guiding him throughout the surgery.” Hard to beat that.
So I was officially allowed to be excited. And to set a date.
Yes, this means I’ll be traveling to California. If there were any other option, I would not be flying during a global pandemic. Even now, I still have concerns. I guess I felt like, if people can go to Mexico just because they want to, I can go get a life-changing surgery while taking as many precautions as humanly possible. I’ll be heading out there with my parents and boyfriend and staying for three weeks to account for pre-surgical appointments, my surgery and hospital stay, recovery and follow-up appointments. Surgery is Monday, February 22.
I won’t know right away if full removal was achieved, though hopefully the doctor will have a good idea. It takes about three months for the hormones to re-balance and for the MRI scans to show an accurate read. But last time I knew after about six weeks that something was wrong. Hopefully this time after six weeks, I’ll know something is right.
