Tuesday, August 21, 2012

A speed bump (cholesteatoma story, continued)

This is an update for those of you who have been following my cholesteatoma story. You might want to avoid reading it if you are squeamish!

I just spoke to my surgeon, who seemed surprised that I still had questions because he had briefed Mike after the surgery. Not surprised in a condescending or mean way, of course...one of the things I like about him is his willingness to explain what's going on in clear terms. I told Mike that next time I want him to take notes or even better, record his report, so I can get the straight scoop. He did his best to convey what he said, but what spouse can remember details after their loved one has had surgery?

I'm feeling much better about the second surgery, mostly because now I know more about it. In my imagination, it was growing to be something far bigger than it actually will be...even though it will still be brain surgery.

He felt the ear surgery went well, and better since he had ordered the CT scan and follow-up MRI. So apparently when he went in to my ear, he was expecting "complete herniation" of the brain (a little detail that I'm glad he did not share with me beforehand) because he always prepares himself for the worst. The cholesteatoma had worked its way into the middle ear and had eroded the incus bone to the point that it was completely absent; apparently this happens often. Then it moved up toward the malleus, or hammer bone, and that's where he saw what looked like dura (lining of the brain) or bare brain. I think I must have had this thing for a long time (I forgot to ask that question). He removed all of the cholesteatoma and "stayed within the bounds" that he had set for himself in this first surgery.

Now the plan is to let my ear heal so that there will be fewer "land mines" during the next cholesteatoma surgery, when he will rebuild my ear bones in six to nine months. And in the meantime...

The next surgery...
Before 2011, he apparently did this type of surgery on his own, but now he involves a neurosurgeon. (He said, "Our world is changing, and everyone wants to make sure it's safer." What that says to me is...malpractice fears!) He will make an incision just in front of my ear up through my hairline. He'll cut a square of five centimeters to expose the dura (brain lining) and progressively lift that up outward to inward...and pull out the intracranial something or other (I was taking notes...but didn't finish that phrase) and do a craniotomy bone flap. He'll cut a small piece to create the new roof for my ear.
I will be observed in the ICU for 24 hours to be safe. He says they take this precaution any time you retract the brain, because of the small chance of stroke, spinal fluid leak, or bleeding. Then I'll be in the regular hospital unit for 2 to 3 days until I'm mobile and functioning well, after which point I can go home. He reiterated that the surgery is much less delicate than the cholesteatoma surgery, and "big by name only."

He referred to it as a "speed bump" in my life.

The world looks a little less bleak now. I'd been imagining I'd have to use up all my vacation time recovering from surgery, enduring horrible pain, and facing horrible risks. I also asked about the urgency of having the surgery (knowing that I could get an infection in my brain!). He reassured me that although it's important to have done, I'm actually safer now than I was before the first surgery. He packed my ear with antibiotic gel so that it's unlikely I would get an infection there. He compared it to childbirth...we want women to recover from having a child before they have the next one (so they will forget all the pain). Ha! I don't think I'll be forgetting the pain. We'll schedule the surgery for sometime in October, probably.

I feel better knowing that Mike can pick up another prescription of pain meds tomorrow. I'd been trying to wean myself too quickly and had quite a lot of pain this morning. I discovered that Tylenol 3 is much weaker than Percocet. I think I'm anxious to get myself off of pain meds because of something that happened 16 years ago...

After I had my first c-section (when Chris was born), I was not resting and recuperating, because I was going to the NICU to visit my tiny, fragile child every day. I had been on Percocet longer than most c-section patients because I wasn't lying still recovering, and one pharmacist refused to fill my prescription because she thought I'd been on it too long. (Never mind that the prescription was written by my OB/GYN!!!) My sister, a physician, was livid at the pharmacist!! I went cold turkey then, because the whole experience was so traumatic for me. The pharmacist thought I was selling them on the street, obviously, while instead I had a child in the hospital at death's door! I think this is why I feel so funny about asking for more Percocet--PTSD!!! Lots of things have an ability to put me into NICU PTSD...this is just one of them.

I've been overwhelmed, during this process, by the support I've received from so many of my friends and family members from far and wide. That's what happens when you have a medical condition in the age of the Internet, I suppose! When Chris was in the NICU, people were just starting to use e-mail on a regular basis. Now the world is completely different.

I greatly appreciate people telling me that I'm strong, because I don't always feel that way. I'll just have to think of myself as a big Mack truck headed over a tiny speed bump. Remember Smokey and the Bandit?

16 comments:

  1. Squeamish so I skipped a few paragraphs (more than half). As my father has brain surgery ( micro tunnel at Dana Farber), may I please recommend that shopping for surgeons should be harder than buying a car. dO NOT GO TO 1 Doctor!!!!! Do not act as a Non-consumer. It's your noggin!!!!
    Make Mike do online research or email my mom. Please. Be your advocate.

    My father is alive because we challenged, got the best advice (not the closest),

    Please GG.

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  2. I really like the surgeon who did my ear surgery--he's a highly experienced otolaryngologist (head/neck surgeon) in a practice that specializes in ears. I did my research before I went to him. I will also do research on the neurosurgeon he is recommending. They will do the surgery together.

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    1. I have been all but confirmed with cholesteatoma could please forward me the names of your surgeon and neurosurgeon please!!!!!

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  3. And, you are already so strong. You are an inspiration to your kids on how to be tough. But know that crying and grieving are a part of the healing process. My dad threw chairs because he couldn't express grief or lack of control. Everyone is different but you are just as tough. Plus can I say your brain is oozing out your ears and you are blogging???? Sorry I probably can't but you know me enough to know you are a rock star.

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  4. Thanks Colleen. I have cried, believe me...the tough thing is that when I cry, it really sucks because I'm not supposed to blow my nose for two weeks. Have you ever cried and not been able to blow your nose?

    My brain is oozing out my ears...wow, now that you put it like that it really does make me want to cry!!! ;)

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  5. Really fascinating, very understandable prose as usual about a complex subject. Glad it seems to be a lesser surgery than the one you already had. And I want to slap that jerk pharmacist upside the head!

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  6. Wow, Marie. I thought the same thing as Colleen: "how can she write this well and cogently after going through all that?! This kind of puts life's daily aches and pains in perspective. Take good care of yourself.

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  7. Wow, you've gone through a lot! I hope your ear heals up well and the second surgery goes good. I should keep you in my prayers...

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  8. Good note taking is essential with complex surgeries, I've found, because everything is so complex and everyone is so overwhelmed that it helps to have something concrete to reference. The notes will also become an amazing record of your journey. As a writer, I know you'll appreciate that!

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  9. I just had surgery on my cholesteatoma on 12-7 and it was supposed to be a pretty eazy 1 hour surgery outpatient but the cholesteatoma had attatched itself to my brain lining and as he removed it it started leaking brain fluid and I ended up in icu for 3 days and the hospital for one more day!! It was crazy! I first started getting ear infections about 3 years ago and thought itwas no biggie but i was wrong!!!

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  10. I just had surgery on my cholesteatoma on 12-7 and it was supposed to be a pretty eazy 1 hour surgery outpatient but the cholesteatoma had attatched itself to my brain lining and as he removed it it started leaking brain fluid and I ended up in icu for 3 days and the hospital for one more day!! It was crazy! I first started getting ear infections about 3 years ago and thought itwas no biggie but i was wrong!!!

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  11. Wow--that sounds even worse than my situation! I'm so sorry to hear that. Hope you are okay now!

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  12. 3 brain hernias and cholesteatomas.
    Help

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  13. Please tell us how you are doing. You are inspiring. I hope all is better.

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    1. I'm doing well; thanks! I still see my ear surgeon regularly to check that all is fine.

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