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My experience after craniotomy to remove a meningioma
I had craniotomy for my 4 cm meningioma on the 2nd of July. I get my staples out in 4 more days at my post op appointment. For the most part I feel pretty good. I have some sight issues that should improve as the swelling goes down. I woke up being able to write but not read. I have problems with compound words and consonant blends. Certain sight words I can not figure out or sound out. It’s a lot of work to read but it is slowly getting better.
I’m not in much pain other than where they stapled the bandage on and stapled the scalp together. My surgery was my left occipital lobe for the most part. They couldn’t get the first drain to seal so had to go back in and put a new drain in. It didn’t seal right away either. Every time they came in and emptied the drain I could hear the air in the area move but felt immediately a release of pressure.
I’m not sue they were able to get it all. I read something on my post surgery ct that mentioned a 5 mm image. Hopefully we got it all. I should find out in a few days. My doctor did his best and I’m so grateful for him and his surgery staff. The mri said the sinuses were occluded and when he got in there and cut into them they weren’t. Also the meningioma had grown into the skull and they had to grind it out in places. He said it was a pretty hard surgery. Thank God for good neurosurgeons.
I’m feeling pretty lucky that I tripped walking my dog at 61 and found it.
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@vernicek Good luck to you and good news to you on the 30th!
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1 Reaction@loriq, it helps to hear from someone who has been there. Looking back to your surgery 2 years ago, is there anything you wish you had known to help you prepare? In other words, what tips would you offer a friend preparing for the same surgery?
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1 ReactionTo those of you who had meningioma surgery at the Mayo Clinic, do you live near the hospital, and how long was your stay? I live in Davis, California and am not sure about traveling for surgery if needed.
@colleenyoung
Colleen,
I found it important to work hard to get yourself back “normal” as quick as possible. I was in the hospital for 3 days. I brought a bag with comforts from home. (Soft blanket/throw, grippy sock (more stylish than hospital issued), chap stick, my own soft pjs. These things made me feel more comfortable/like myself. (Especially the pajamas). I changed into those the second day. I truly believe it helped me feel like myself faster and move on.
You will sleep a lot! Don’t fight it or rush it. Take the time for you.(especially once you get home.)
Jot down questions for your care team when you think of them., so you can get them answered either while you are still in the hospital or later after you’re home (before your 1 year check-up.)
Biggest thing I found was to remain positive.
I agree, it helps to talk with someone who has been through it. I myself wish I had knew this forum existed 2years ago.
Feel free to reach out to me here as things progress.
Wish you the best.
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5 Reactions@vernice
I live approx. 3 hours from Mayo (driving distance). I was there 3 days.
If you will be traveling via airplane, you may want to look into other transportation. ? If I recall, I was unable to fly for more than a couple months. I would definitely confirm that with your care team in advance.
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3 ReactionsWow, that's a great story, thanks for sharing.
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2 Reactions@vernicek: I've been thinking about you lately as I knew your scan was at the end of the month, sometime. Being asymptomatic since your last scan might indicate that it hasn't grown at all, or very little, as you're not having symptoms from nerves or other structures being impinged upon. Find solace in the fact that you're getting excellent care at UC Davis. Let us know how it goes.
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1 Reaction@loriq I did a lot of the same things. I brought my favorite cold cup, zip up pj's so I could walk and not worry about what I was showing, vaseline lip balm, my own toiletries and slippers.
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3 Reactions@mkoch Thank you for thinking about me! My fingers are crossed that the meningioma hasn’t grown. If it has, I believe my neurosurgeon will suggest some type of radiation treatment over a 30 day period. I’ve been researching Photon and Proton treatments. My doctor is hesitant to perform a craniotomy on someone my age due to the time under anesthesia. Today, I pondered choices and what part of my life I would want to be interrupted. Is it better to treat the tumor now since it’s so close to the optic nerve, or later if I have symptoms? I’m very healthy and active at 75 without one other health issue, have travel plans with my family and friends, ride horses, and exercise everyday. Do I want to interrupt that, or do I want to risk getting symptoms and treat the tumor at a later time in my life? I will know more after Thursday’s MRI and a meeting with my surgeon on August 12th. I also have a second neuro-ophthalmology appointment in September. Thanks again for checking in.
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1 Reaction@loriq It sounds like I should stay close to home. I’m pleased with my neurosurgeon at the UC Davis Medical Center and live 20 miles away in Davis. At this time, my doctor has recommended some type of radiation treatment over a 30 day period. I am researching Proton and Photon treatments as well.