My experience after craniotomy to remove a meningioma

I appreciate the after-surgery suggestions. I am weighing the options of having surgery vs. gamma knife radiosurgery. I met with two different neurosurgeons, and they both said that both options are favorable, but surgery is probably the best option due to my age, 49. Curious about how others weighed the options of surgery vs. radiation. My meningioma is 2.6 mm and encroaching on my left ear canal, and I also have 3 small ones on the right side of my brain.

@jvo2020neb1: The neurosurgeon I consulted at UCSF said surgery is the first choice if the meningioma is in a space where nearby structures won't be compromised. Prior to meeting with the neurosurgeon I met with a radiation oncologist, the doctor who would oversee radiation therapy. Of course I asked him about side effects and when he told me there was a 5-10 per cent chance of radiation necrosis that was enough for me to look elsewhere. Also, I didn't want to go 5 days a week for 6 weeks and have to go through the rigamarole of having my head pinned down. And I tend to be claustrophobic; the whole mask thing gave me the eebie-jeebies. At 75 I'm good with 3 flights of stairs rather than take an elevator. My meningioma was 2.7 cm. and I was told that once it grew to 3 cm. radiation therapy wasn't an option. (Although I've read posts on this site that state they had radiation for larger lesions.) If the idea of a craniotomy is disconcerting there was a recent post by a person whose experience with the surgery was pretty much the same as mine, that being that it wasn't the terrible experience I had imagined at all. I posted 2 years ago I was at the door passing out Halloween candy 2 weeks post craniotomy.

Darn! My August 30th MRI reported no meningioma growth in six months. Today, my neurosurgeon told me it had actually grown 1 milliliter and recommended a radiology consultation to determine the best treatment. Gamma Knife is not an option. I also have a second neuro-ophthalmology appointment scheduled. Luckily, I don’t have any symptoms and have the choice of another MRI in six months. Will know more next week.😕

Keep up whatever practice you can do. Think of additional ways to retrain some brain cells and don't give up. It took me a few years to regain 'normal' functions but new brain cells have grown into that fluid filled 'empty' space, as seen in yearly MRIs. My brain surgery was far less complicated, was in 2007, and in my right frontal cortex. Good Luck!

@vernicek: Did the radiologist call out no growth but the neurosurgeon reviewed it personally and said 1 millimeter of growth? (After my last MRI check-up I was trying to schedule the follow up with my neurosurgeon. The scheduler suggested a date 1 day after the MRI scan. I said, "But I'm afraid the radiologist's report may not be ready by then." The scheduler's answer was, "He doesn't read those anyway." So is this your situation, that the radiologist cleared you as no growth but the neurosurgeon's review contradicted his report?

@mkoch

Below is my JULY 30th MRI report stating no significant change in six months. My appointment with the neurosurgeon was yesterday, AUGUST 12th, my neighbor, who is a doctor, accompanied me. Dr. S’s assistant said the tumor grew and that it’s better to get MRI information from the doctor, not the radiology report.

My neurosurgeon, neighbor, and I spent 45 minutes studying and measuring the meningioma on both MRI reports and agreed that the recent images looked and measured about one millimeter larger.

I now have an appointment for a third MRI in February, but will see the UCD radiologist for his opinion this month about fragmented radiation treatments now, or later. I don’t have any symptoms. I’m not claustrophobic and only live 15 minutes from the hospital. Friends, neighbors, and my husband will take me to the 30 appointments. I’m wondering how I will feel after each treatment and how it will affect my active life. Dr. S said the treatments will cause fatigue about two months after the treatments for a short period of time.

Brain: These images again demonstrate left middle cranial fossa dural based avidly enhancing mass around left clinoid process measuring about 1.4 x 1.1 x 1.5 cm (was 1.4 x 1.1 x 1.6 cm retrospectively) not significantly change since previous study within the given difference in technique and slice selection. The mass [and adjacent dural tail] slightly abuts lateral aspect of the prechiasmatic segment of the left optic nerve with no obvious intrinsic signal abnormality at this time. Adjacent dural tail/thickening slightly extends to lateral aspect of the posterior optic canal (11:60). Medial aspect of the mass adjacent to paraclinoid internal carotid artery which is patent and [The] rostral aspect of the mass in close proximity to carotid terminus which has minimally displaced dorsally.

First: a big thank you to everyone who shared about their experience. I'm scheduled in 25 days, and am absolutely terrified. My "thing" is 1x2.8x3.2 cm and located at the top of my head, left side, next to/near the superior saginal sinus - which is the main vein that drains blood from your head. I am so scared this vein might get nicked, which could trigger a stroke. I'm not having any symptoms other than occasional headache in the morning (but that could just be wildfire smoke (I live in the west). Anyone else have a meningioma in this location? How did you do? thank you all.....

@vernicek Well it's good that you aren't having any symptoms. I read someplace the meningioma only grows 1 mm a year. Mine was 4 cm when we found it, and I was asyptomatic. It really just depends on where it is located I guess. I did have mine removed even though I didn't have any symptoms. I have had a couple of issues clear after I got it out though, even though my neurosurgeon didn't think they were related, maybe they were related by pressure.

@ladytri I had my tumor in the same general area. However, mine was over the sinus and went over the upper and lower lobe. The mri said the sinus was occluded. When he got into my surgery and cut through the sinus it was not occluded at all. He said ,"You definitely don't have a lack of blood flow in there". They ended up clipping it until they got everything taken care of and removed. It was just a little busy for a bit. I was fine in the end. I'm 6 weeks post surgery and still heading the bone but everything else seems ok. A little tender on the surgery site still.

The one thing I wish I would have done was prepare by getting my hair really trimmed short before because they shaved the entire back of my head. I ended up not being able to salvage my shoulder length bob, but did a pivot and had a short pixie. If I had made it short before they wouldn't have shaved so much and I wouldn't have to grow out the crown area too. Food for thought.

@jvo2020neb1 Because mine was 4cm and I wasn't having any symptoms I weighed the fear of having a stroke or seizure in the future by surprise as a greater evil. I thought it would be an easier recovery from surgery than from a stroke. For me that was correct. I'm 6 weeks out and still tender but doing fine. I just got back from a girls' trip and feel confident in my decision. I'm 62.