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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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@kdog1957 thank you! That is great news. I hope for a recovery much like yours. It’s amazing what medicine can do now.
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1 ReactionI also had a craniotomy / mingioma at Mayo in Rochester July 1 2 years ago (2024). staples and stitches came out well with no lingering problems. I did lightly rub the healing area. It seemed to help speed up/ reduce the swelling process.
If you see improvements already in some of your setbacks, that’s great! Keep working on it!
My surgery was on my right occipital lob. Sounds like I experienced little pain like you described above. I was very tired. Sill struggling with fatigue. They say it can take years to heal fully. I m hopeful. I have a titanium plate as well and have had no trouble or discomfort there.
It is amazing what the medical team and your body can do.
With my surgeons blessing; I went to Disney 6-months after surgery and rode all the rollercoasters with my Grandchildren. 😊
Wish you the very best!
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5 Reactions@lovestocook, how are you doing now 2 weeks later? How is recovery progressing?
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1 Reaction@colleenyoung It is now 3 weeks later and I am progressing well. No longer taking 2 naps a day, sometimes no naps. I can still feel the bone patch is not healed completely, I can lift 20 lbs, walk 10,000 steps a day, my reading has come back quite a bit and after I got my stitches and staples out my incision has almost completely healed. That being said, my incision is still really tender on the side that they stapled my bandage right on the stitches. Those stitches were pretty raw since it was on the back of my head and when I sleep it put pressure on them and pulled side to side.
Once they took my bandage off they had shaved so much off the back of my head, and I had 12 bald spots from the shaving for markers, that I had to cut all my hair off. I was able to salvage a pixie cut out of it. I'm not disappointed though because I've been wanting to do a drastic change for a bit and it is cooler for summer.
My memory is still a little sketchy, nothing major. My eyesight all together is up and down from day to day but seems to be stabilizing if not improving a little. A couple of odd things that I asked about that the doctor said were not related have improved. I haven't had a sense of smell for at least a decade and it is somewhat back. I had a loud pulsing sound in the right side of my head at night (sometimes during the day) and I could even feel it on the right side of my throat and that's gone. I was also having hot flashes again in the middle of the night and that's gone. I hope those three things don't change with full recovery.
Overall I would say it's a win! Thanks for asking.
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6 Reactions@lovestocook WOW! Your story is remarkable! Congratulations on your positive results and thanks so much for sharing the details.
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2 Reactions@vernicek You are welcome. It has been pretty smooth so far. I have an MRI scheduled on September 29th to see if they got it all. My doctor said, "If I didn't it was in an area we wouldn't want me to work in". My feeling is if it supposed to only grow 1 mm a year and he missed only a little bit, hopefully I can have enough life left to not have to have another surgery on it. It was at 40 mm or 4 cm so I should be ok. No one in my family lives to be 100. I feel like I'm on borrowed time if I make it 20 more.
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1 ReactionThat’s wonderful news and pray you continue to do well. Do you mind sharing where your meningioma was located?
@csue1 my meningioma was on the back left side of my brain, behind my ear but just inside the hairline, inferior left occipital lobe and superior cerebellar hemisphere. It was grown into the bone they took out and the dura mater of the brain but not inside the brain itself. Probably one of the easier ones to treat.
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1 ReactionI’m nervous about my second MRI on the 30th. I have a small meningioma close to the left optical canal without symptoms so far. 🤞
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2 Reactions@vernicek when I first found out and didn't have much information I used AI mode on Chrome and asked it questions giving it as much information as possible. I found a online stories from other people that had something similar and it really calmed my nerves. I read a testimony of a woman who had it wrapped around her optical area, in Utah. She started having seizures was how she found out. 3 weeks after her surgery she was training for a marathon with her family. That really helped me calm down. I've pasted the article below. I just pulled it up again using AI.
https://giving.utah.edu/stories/u-of-u-health-neurosurgeons-remove-montana-mothers-complex-benign-brain-tumor/