In comparing doctors, it really does make a huge difference when one takes the time to treat me like an actual human being instead of the medical codes that correspond with my multitude of diagnoses. This is where my possibly new neurosurgeon comes into play, with the “good touch”. His name is Dr. McTractive and he’s a neurosurgeon at Shands at the University of Florida. I had a consultation with him yesterday (for the second time in my life) about having him perform stereotactic radiosurgery on my cranium. It’s basically a Pink Floyd laser light show on my brain, a “bloodless brain surgery”, if you will.
He was only about 2.5 hours late in getting to my appointment, as he was dealing with some sort of medical emergency earlier in the day, which in turn, threw his whole schedule off…oh well, such is life, but he spent a good 45 minutes with me and my mom, going over the procedure in great detail and answering any/all of my odd questions. Also, once you see his face and get a sense of his bedside manner, his lack of punctuality is virtually meaningless. I’ll attach a photo at the bottom…filtered through Instagram, of course. His real name is Dr. Foote, but in my mind and in my writing, I’m now calling him Dr. McTractive. However, he is married with children, but that’s beside the point! He’s complimentary; I ask a lot of questions and I write everything down, and he was looking in my color-coordinated notebook and told me that I have nice handwriting. He also laughed at all of my jokes, and told me that I’m rather intelligent, which was nice of him (opposed to DQ, who insults me on a regular basis – bad touch!)…He clearly passed Therapeutic Communication with flying colors when he was in med school, as his bedside manner and ability to communicate effectively with the patient and others is phenomenal.
To make things a bit clearer regarding radiosurgery, whether or not I’m a candidate for it all depends on my MRI results from the future (next Tuesday)…I go back to see Dr. Roper then, and I have an MRI scheduled, to see if the tumor cells are once again visible, and if so, if they are 4 or more mm from my optic apparatus (nerve), then radiosurgery is a viable option. If not, I will turn to plan 309873, being a bilateral adrenalectomy (BLA). The problem is still in my brain, coming from my “Master Gland”, being the pituitary. Womp womp. Dr. McTractive did show my mom and I some footage from one of my MRIs, so we got to see my brain on the big screen. It was pretty cool. Better than the Bush’s beautiful bean footage I’ll say. I got to see the sella tursica (sp?), which is the bit of bone that has been carved out of my sinus cavity so they can reach my pituitary gland. I also saw the backs of my eyeballs and my optic nerves AND my optic chiasm (where the two nerves join as one)…very cool!
Dr. McTractive has performed thousands of brain surgeries, but only 10 relating to my case. However, he is the best of the best and I fully trust him. The best part about the surgery is that beforehand, I get a lot of valium, in which he calls the equivalent of a “3 martini breakfast on an empty stomach”…because then he has to bolt a metal halo into the surface of my skull…OUCH. He said that 4 men have passed out from that part in the past, but no woman has ever passed out. He’s placed over 4000 halos on people, so he’s pretty awesome at his job. However, that’s the worst part of the surgery…but the best part is that after the halo is in place, I would get to go into a room full of other patients with halos and eat breakfast…seems like a futuristic thing to do! I’m going to bring Cranium to play (if I elect for this procedure/if I’m even able to do it!)…Ahahaha. The actual surgical team consists of Dr. Foote, a physicist, and a radiation oncologist. I have such a long list of medical professionals associated with me/my dumb condition.
I don’t want to jump the gun, but this is a very real possibility for what might occur in the near future. So, WWDFD (What Would Dr. Foote Do?) you might be wondering…I actually wrote that down as one of my questions, and he said it was a great one. He said he would do what I’ve been doing, and research my options further through credible medical journal sources. He encouraged me to learn more about the side effects of a bilateral adrenalectomy in treating Cushing’s, in addition to his procedure. Because my condition is so rare, there’s not toooooo much out there about it, but there is some good literature for reference purposes. He did say that if I have my adrenal glands removed, I would run the risk of turning orange, like an Oompa Loompa. That’s not at all ideal, so I don’t think I’ll opt for that at this point…at least he’s blatantly honest! I have some serious decisions to make coming up, NBD, it’s only my life we’re dealing with here… 🙂
Anywho, I’m taking suggestions for the name of my tumor, as this beast won’t seem to leave my life. Also, I’d encourage you to check out the new Facebook “fan page” of sorts that I created recently, called Kicking It With Cushing’s…”like” it to stay up-to-date with my medical drama. I’m also going to post some healthy recipes and funny things on both new pages (this blog and FB).
I’m a beast and will crush this disease, and have mad coping skills, as COPE is half of my last name. I just realized that today, haha! Better late than never…I have 4 more medical appointments, plus lab work this week and next week, so if that doesn’t add a load of stress to already stressful holidays, I don’t know what will! I truly hope everyone is having a lovely holiday season and I look forward to being in touch and possibly seeing many of you soon. Remember, good touch trumps bad touch, always. Send me your positive energy, and together, we’ll kick this disease’s arse.
Kicking Cushing’s to the curb,