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Brain surgery….me???

I had my first speech pathologist appointment this week. Right away he noticed that my tongue seems stuck to the roof of my mouth. I’d noticed that too, but wasn’t sure where it was supposed to hang out. Who ever notices these things before you really need to know?! He had me read some stuff and do some tongue exercises, and I have a lot of daily homework to do before next week’s appointment. One thing is to read while using a metronome, one word with each click. The speeds are 55 beats per minute (VERY SLOW reading speed!) and then whatever speed I feel most comfortable. I showed him that I can say anything perfectly if I talk really fast, and he said he’d never seen that before. Great. As if I’m not odd enough! And it turns out, the reading speed I’m most comfortable with is 192 beats per minute, or about 3 words per second. I wonder if it has anything to do with my normal reading speed, which is very fast, around 1500 words per minute? (I read two or three books a day). I’ve been really concentrating on keeping my tongue away from the roof of my mouth. I’m thinking it can become a habit, and 90% of my speech problem will be fixed. He thinks if I can correct the “S” pronounciation, I’ll sound near normal. (“L”, R” and “TH” are the other sounds I have trouble with.)

He thinks the speech problem is related to the brain tumor and not, as the neurologist thought, a brain stem stroke too tiny to show up on MRI. So now I don’t know what to think! He strongly thinks I should have the tumor excised while it’s nice and small and easily removed. He pointed out that I have probably 20+ years to live and that the tumor will most likely have to be removed at some point, and if I let it grow, it puts out tentacles that attach to blood vessels and my speech center. That makes surgery much harder and every cut they make to the tentacles, also damages the brain. Yikes!

But….BRAIN SURGERY??? I’m just not quite ready to have my brain bored open, even if it IS supposedly an easy fix right now. The neurologist also thought I should have it removed. Two against one! So I’ve made an appointment with a neurosurgeon in Flagstaff. “You don’t need surgery”, SAID NO SURGEON EVER!

But the logistics are mind-boggling. I had a terrible time finding someone to drive me to/from my one hour cataract surgery 30 miles away. Where do I find a designated driver for a surgery 2 1/2 hours away, when I’ll probably have to be in hospital for a day or two? Somehow I doubt they’ll let me just hop in my car and drive myself home after brain surgery. And surely I’d have to go back for a post-surgical checkup a few days to a week later, before being released to drive. Plus I’m not even sure if I have time before leaving the country to get it done and recuperate. Covid restrictions allowing, my flight to Albania is on March 22.

So I may put it off til I get to Albania. One of the best neurosurgery centers in the world is in Milan, Italy, a short flight away. I’m not sure if the private health insurance I’ll get will cover me outside of Albania or not, so that might mean I’d have to pay out of pocket for the surgery. It’s far far cheaper there than here but I think it still costs around $1500. I’d need some time to save up for that, plus hotel or Airbnb costs for the week or so I’d need to be there. But…there’s no tearing hurry to get it done; these meningiomas are very slow -growing.

And the deepest darkest part of me wonders if I’ll come out the other side and still be “me”. Pretty sure I would be, heck it’s not like it’s a frontal lobotomy! And if not, maybe I’d end up a nice happy extrovert instead of this uncomfortable introvert. Hope springs eternal!

7 replies on “Brain surgery….me???”

Well that is a problem with the ride thing. You will have to delve into the Albania to Milan thing and see how much it will cost and if your medical will cover. Wishing you the best possible alternative.
Happy Holidays!

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Lots to think about. I have no doubt you will figure it out. I can barely stand to have anything invasive done here and know nothing about doctors in other countries. I am a very distrusting person . I have seen good and bad working in the field . I have no doubt you will figure it out. I always been a fast reader but holy molly you really are speeding. I noticed I can read fast but don’t necessarily comprehend what I am reading. So I reread slower. wishing you well.Sincerely Evita

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Thanks Evita! I’m sure I’ll muddle through somehow. It’s scary because I’ve always avoided general anesthesia, I’m just SURE I’d be one of those people who are paralyzed but can still feel everything!

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Hi Janis, complete stranger here! I’m sorry to hear about your situation. I dealt with brain tumors with my little boy years ago. I strongly recommend second opinions. The best advice we ever got was from a neurologist. I don’t mean any disrespect to your speech pathologist, but those guys are not medical doctors, and giving advice on how to address a meningioma is far outside of their scope of practice. In fact, stepping that far afield can be grounds for an ethics complaint.

I don’t know where you’re currently based, and I understand transport is a real problem. But if you can make it to Phoenix, Mayo Clinic and the Barrow are world-class neurology and neurosurgery treatment centers. I’m really intrigued by your overseas option, but I don’t have any useful information about those.

Best of success to you, and may you have good health in the new year! Noelle

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Hi Noelle, thanks for your input. You’re right, Barrows is one of the top centers in the world, coming in right behind the one in Milan! (Mayo in MN is #1!) I decided to check out the surgery option because my neurologist basically daid the same thing as the speech pathologist, she just didn’t make the consequences sound so scary!

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You will be in our thoughts and prayers as you make this decision. In my opinion after talking with the specialist and doing your research, which it sounds like you have already done, you need to do what feels right for you.
Merry Christmas! Tom and Deb

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