Diagnosed with Meningioma

@daisyr: I'm so happy you are having it done at Mayo Clinic. And I think finding a neurosurgeon that you really trust makes a big difference in one's anxiety level regarding the surgery. I think you have seen my posts regarding my craniotomy experience. And, recently, someone else mirrored what I had said, that being that the surgery wasn't painful and the recovery was not terrible either. I would say, "Wishing you the best of luck," but it isn't luck, it's the skill of the neurosurgeon and the hospital where the surgery is being done. And you're in one of the best!

@mkoch I’d like to see your craniotomy experience. How can I find it? I think I saw something in my email about it but have lost it. Thank you

@daisyr: I browsed through my posting history and hopefully was successful in my attempt to copy and paste 3 of my posts to you as private messages. Especially the last one I sent that starts with, "Quite an array of responses. I guess I will add my own," is a pretty detailed account of my experience. So please let me know if you received the private messages. I will add another thing which is that while you're in the hospital, post craniotomy, they keep your head at a 45 degree angle. I bought 2 incline pillows (like the ones people use while sleeping if they suffer from GERD) and the two of them on top of each other kind of matched the 45 degree angle. I used them for another week after returning home. Also, I was on steroids for a month. My neurosurgeon's N.P. ( who removed my 42 staples) told me that the protocol for steroids used to be 3 months, many neurosurgeons were now prescribing for just 2 weeks, but Dr. Theo... kept his patients on for a month, to prevent seizures. The day of discharge the pharmacist came up to go over all my meds (he had a PHD in pharmacology) and after reviewing my steroid schedule turned to my husband and said, "Good luck with that." As you probably know, supposedly steroids can make you prone to anger. Of course that wasn't so in my case. 🤣

@mkoch thank you so much! I already sleep on a wedge pillow for sleep apnea so I’ll plan to grab a couple prior to surgery at hopefully a local Target or somewhere in Florida. I’m flying from NY. They are asking me to wash from the neck up with Provodone iodine the night before and morning of surgery which I’m pretty nervous about. 42 staples seems a lot. Was it a frontal craniotomy? Did they just shave a portion of your hair? I’m concerned double vision might make me nauseous. Did it bother you? Thanks again for sharing. Much appreciated.

@mkoch thank you so much! I already sleep on a wedge pillow for sleep apnea so I’ll plan to grab a couple prior to surgery at hopefully a local Target or somewhere in Florida. I’m flying from NY. They are asking me to wash from the neck up with Provodone iodine the night before and morning of surgery which I’m pretty nervous about. 42 staples seems a lot. Was it a frontal craniotomy? Did they just shave a portion of your hair? I’m concerned double vision might make me nauseous. Did it bother you? Thanks again for sharing. Much appreciated.

@daisyr: You would only need to buy one more wedge pillow to augment what you already have. I cheated and only washed the night before. I showered late at 10:00 p.m. and had to get up at 4:30 a.m. to be at the hospital at 6:30. (I made sure my sheets were freshly laundered and had not been slept on after I used the iodine wash.) I did not have a frontal craniotomy. You are "lucky" in that a frontal craniotomy is a less complex surgery than the sphenoid wing surgery I had. My surgery was close to my optic nerve. Maybe your meningioma is not near a structure that would compromise your vision. And, even with my double vision, I was never nauseous. There was a portion of my head that was shaved. But, the surgeon did it in such a way that a random person on the street wouldn't be able to notice unless I pointed it out. The worst part of my craniotomy was all the worry I did before it. I've had a mastectomy and hysterectomy and those surgeries were much more difficult for me. When are you scheduled? Are you going to the Mayo Clinic in Florida?

@mkoch the meningioma the surgeon will be working on starts at the anterior clinoid, encases my right optic nerve and is extending to the chiasm heading toward the left eye, the surgeon says he probably can’t get it all as it’s so close to the optic nerve and carotid artery so I’ll probably need fractioned radiation afterwards at some point. Thanks for your tips since I have to wear headgear after the iodine wash for my sleep apnea, I probably need to do it in the morning too. Is it hard to wash your hair with it? Did you use the 10%? Thx again.

I had my Meningioma zapped back in March 2024. I had the Gamma Knife procedure at UofP. I walked in at 6:30 am. Walked out at 3:30 pm. I get an MRI annually to see how it’s doing. The procedure wasn’t too awful.

Good luck.

@dlc1953 : Is gamma knife the one they bolt your head down and the machine circles you or the one where they form a mask to your face?