I like my doctor – Bob Rostomily – which is good considering my life will be in his hands, literally, but I was encouraged to get a 2nd opinion. It’s normal practice, doctors don’t get offended, and you should feel good about who is doing your surgery.
So I met with Dr Sekhar who actually trained Rostomily for 6 months, in addition to Dr Harsh, who was another guy recommended to me that works down at Stanford. I figured if I was getting a 2nd opinion, go with the guy that teaches others and is world renowned.
He basically confirmed everything I heard the first time around which is essentially go in, get as much of the tumor out as possible without causing damage to anything important. Hearing it a few weeks later, I was able to digest more of it and in general feel more comfortable with the whole procedure. I never expected to change surgeons but one comment really solidified that for me.
Rostomily likes to take his time. Someone else in neuro also made the same comment to me. The surgery will likely be twice as long than if I had gone with Sekhar. I know there are pros and cons to both but slow just feels right to me. Sorry Kelsey and parents! They’ll be in the waiting room for as many as 16 hours and it’ll feel like the blink of an eye to me.
Yesterday I met with Rostomily and his team to go over the procedure a little bit more and hear about the potential risks. He’s been doing this for 20 years, specialized in this part of the brain, and he’s still only done 12-15 removals of the kind of tumor I have. Sekhar does every removal of this kind at Harborview, and that’s only 20 of them in the last 30 years. I have an incredibly rare tumor. Yay.
Part of the rarity means more unknowns. The list of potential risks is probably no worse than any other brain surgery. Here they are in no particular order with other random info I got…
He doesn’t expect to be able to remove the entire tumor. So that leaves the door open to additional surgeries, and definitely radiation.
Radiation won’t start for at least 4 weeks after surgery to make sure everything has healed and my body is ready for it. This could mean chemo, really depends on the pathology report and the success of the surgery.
They have to remove part of my skull bone to get in, if they can’t put it back, I’ll get a titanium plate instead. I’ve requested adamantium and am still waiting to hear back from Wolverine.
They may have to take a piece of fat from my abdomen to put in place of the tumor after it comes out. I don’t remember exactly what it’s for, make sure stuff doesn’t swell or something – I started thinking about 6 pack jokes and got distracted.
I’ll have a drain put in (probably) to help with drainage. It’ll be in my right frontal lobe where it’s pretty low risk to do any damage. It’s a precaution, but they’ll likely do it and as long as I have the drain in, I’ll need to be in ICU. Probably 48 hours. If my brain doesn’t drain properly, I could need a more permanent solution where it drains down into my belly.
The tumor is growing around several cranial nerves so here’s what I could lose – facial control, hearing in my left ear, ability to swallow (would need a feeding tube), vision issues. If I have any of these problems, they could just be temporary. I may need help with a speech therapist after and potentially rehab.
I may wake up with the breathing tube still in – ugh, brutal.
My new baseline won’t be measured until 3 months after surgery. Scar tissue and swelling can look like tumor cells in a scan so you have to wait a while before you know how successful the surgery was.
There’s no guarantee I’ll get any relief from my headaches or dizziness from removing the tumor. I doubt that’ll be the case since I was fine a while ago when the tumor wasn’t as big, but man, that was a bummer to hear. I was assuming that was a given.
Day of surgery (the 13th) I’ll get up at 4:30am, shower, twice. Arrive at the hospital at 5:15am, get a couple of IVs put in, get an MRI (they’ll do the scan with some fixtures on my head to help aid in surgery in knowing where to cut), MRI should only be 30 min this time, and surgery starts around 9:30/10am. When I get out they’ll do a CT scan to look at my brain arteries – stroke from a blood clot is another potential risk.
That’s about it. Not sure if I’ll write again until post surgery and it’ll probably be Kelsey giving updates.
The support from f&f has been amazing. My parents flew up from LA as soon as I got the news and my mom is staying for as long as we need her. Local Seattle friends have been bringing dinners to us which has made things easier for us.
There’s no way to know the exact number, but I’m pretty sure there are thousands of people praying, sending good vibes and thinking of me and my family right now. That’s powerful stuff. It’s been a hard few weeks. I’ve been very depressed, detached and I’m sure a downer to be around. And then I’ll get a card or a message from someone I haven’t heard from in years, or someone I talked to the day before, and it’ll lift me up a bit. And every bit helps.