New Here and Qs about 12/2021 surgery

[BikeReadWashRepeat]

Hello all. I'm scheduled for an occipital craniotomy in December, and I'm feeling very fearful about life after this surgery.

In March of 2020, I was diagnosed with a 2.4 x 2.4 x 2.3 cm meningioma along the superior left tentorium, just to the left of midline, resulting in mass effect on the parasagittal inferior left occipital lobe with mild vasogenic edema. My MRI in June 2021 measures the meningioma at 2.6 x 2.5 x 2.3 cm, with mildly increased vasogenic edema.

When I first saw the report, I thought it was such a small amount if growth that we would still "wait and see." My neurosurgeon, however, is recommending surgery at this time, due to the direction of its growth, the increase of edema, and a visual field exam that demonstrated increased loss of peripheral vision. Due to the location and proximity to sinus cavity and other anatomy, the neurosurgeon hopes to remove 75-90 percent of the tumor but does not belive he can remove it all.

My symptoms include visual disturbance, vertigo, headache, and fatigue. I've also had some aphasia, but the neurologist and neurosurgeon don't think that is related to my tumor, and question whether the vertigo is related. This means that two of the main symptoms that drove me to seek care are not going to be impacted by surgery. On top of that, my vision is slightly affected now, but might be more so after the surgery, at least for some time.

I guess I'm afraid the surgery will be all loss no benefit. I'm also worried about what parts of my life will be impacted. I'm an avid reader, love to ride my bike, and spend all my vacations in theme parks riding coasters. The visual disturbances I have do stop me from enjoying those things, but only for short periods. I'm scared I'll have more permanent loss of vision after the surgery, or even side effects that I'm not experiencing right now.

This turned into more of a rant than I intended. I'm really curious if anyone has had a similar sized/placed tumor removed, and what was the experience like after? The surgeon mentioned that I won't be able to read right after surgery, but I was in a bit of shock and forgot to ask for how long and if that means other things like games and TV will also be out of the question?

[Lytham]

Hi I was told I wouldn't be able to read after my craniotomy but I believed that was more because of a concentration issue? I also have limited peripheral vision in the eye in front of the tumour but tbh it's nothing I can't live with.

Good luck with the op x

[Bluesunflower2]

Hi, it took me about 2 weeks before I had the energy and attention span to read after my craniotomy. My tumour was completely different from yours though. I do wonder if the aphasia was/is related to swelling? Best wishes, sounds like a tough decision for you.

[BrainBrain]

It really is your decision about whether to have the surgery. I'm in the UK so it's a different process, but I get the impression that in the US what you're getting is the recommendation of one neurosurgeon, rather than from a team of different specialists such as ophthalmologists, radiologists, oncologists, etc (I'm not certain about this!). When we are advised to have surgery, our case has been reviewed by a multidisciplinary team beforehand. If I were you, I'd at least seek one more opinion before opting for surgery. Obviously the surgeon has given good reasons for you going ahead with the surgery, and it does sound like they are thinking of your long term health. If another NS agrees with those predictions, then you can perhaps feel more confident that it's the right move.

My M is in a different location, and I was told that with surgery there was a 10% of temporary visual problems, and a 10% chance of permanent problems. I went for the surgery to partially remove it because my tumour was massive, and the chance of permanent problems if I didn't have the op was significantly higher (not a quantifiable chance, but clearly obvious from my history and the MRIs). I've been lucky to have no problems at all.

Good luck xxx

[BikeReadWashRepeat in reply to BrainBrain]

Thank you for responding. I've actually tried multiple times to get a second opinion. Healthcare in the US is a different kind of beast. I have an HMO, which means it's a closed system. I contacted several neurosurgeons in my area over the last year to seek a second opinion, but they all required a referral. I can't get a referral outside of my HMO. It's been a frustrating cycle. I can ask to consult with another neurosurgeon within the HMO, but when I asked for details, I was told the new neurosurgeon would not perform a new examination or test, but review my chart. I have not given up and will at least have that consultation, but it seems to me after years in this HMO that the doctors often rely on the same playbook and their views are rather homogeneous. It must be comforting to be able to rely on a panel of advisors rather than one point of view!

[fluffyfur in reply to BikeReadWashRepeat]

You can often email a NS and do a private video consult outside of your HMO and just pay out of pocket. It's worth it for the peace of mind.

[teamercedes in reply to BikeReadWashRepeat]

It's that time of year to change insurance. I upped all mine after this year finding 4meningiomas only 1 removed so far. I didn't ask my primary care for another referral i just went to Mayo clinic website. They requested all my approvals for an appointment. With 3 months i had new Dr and surgery. Good luck. I've also been told my symptoms they can't say if related to meningioma and it had my left side of my brain caved in. Never had swelling that's why first Dr. I had acted like it was no big deal that it didn't need to be removed that they'd watch it I was unhappy with that if anything is touching my brain it shouldn't be in there so that's how I got Mayo clinic. But as for the symptoms yeah they I had balance loss of balance memory words forgetting all that good stuff and they wouldn't say if it was both doctors wouldn't say if it was related to the tumor or not I think it's just because removing the tumor if it doesn't fix they don't want to be blamed for being told that it was related to the tumor and now the tumor is gone I think once the damage is done it's done for the most part in some cases but my headaches are gone going to physical therapy for the balance I believe it was the tumor cuz I never had the issues before I don't know why they say those things they almost make you feel like you're faking it when you tell him your symptoms again good luck

[Piquedame927]

My meningioma sounds very similar to yours. I have had two surgeries that have removed part of the tumor, but the remaining piece is wrapped around my carotid artery. Since this is a benign tumor, my neurosurgeon does not want to dramatically attack it. The problem with my tumor is that it is on my right optic nerve, causing almost total loss of vision in that eye. I have some vision issues, since I have no vision in my right eye and there is very little hope that it will be restored. I had to take a driving test this year, the first time in a long long time, and I passed, which was exciting: but I can only drive during the day and cannot drive in intense rain. So I have driving limitations and cannot read for long periods of time. This frustrates me because I too am an avid reader. I can no longer go for walks by myself because I don’t feel that my vision is good enough. I do think you should proceed with your surgery because there will be some success. My doctor has suggested me having radiation which I am not doing at this point, but I have had two more small tumors appear that I had to have removed with gamma knife radiation.I hope this helps you because I understand how worried you are. Please let me know if there’s anything more I can share with you.

[BikeReadWashRepeat in reply to Piquedame927]

Thank you. It does sound like our tumors share similarities. I know there may be a new normal I have to adjust to, and it does scare me, but it helps a great deal to know the ways you've adjusted and that you are still positive about the surgical route overall.

[Bichondaisy]

Hi I have a 2 cm tumour in my occipital lobe with exactly the same symptoms as you Mine is also very close to the sinus Because of this my neurosurgeon doesn’t want to operate as very risky He also said that removing the tumour would not make any difference to the headaches , my visual disturbances or the vertigo which like you were the main reasons I visited the doctor. As with you he was skeptical that the headaches and the vertigo has anything to do with the tumour which I totally disagree with

The visual disturbances would still be there as surgery leaves a cavity and scar tissue

I am having a scan at the end of November to see if the tumour has grown .. if it has its radiostactic surgery if not back to W&W I am worried that if they just leave it my eyesight will never get better and I will not be able to drive again

Good luck with the surgery. It’s all very worrying

[BikeReadWashRepeat in reply to Bichondaisy]

I'm so glad to hear from someone else with such a similar situation! Can I ask in what country you're located?

It is indeed all very worrying! My ophthalmologist (of all people) is the one who said it most candidly: the tumor position makes it lose/lose because it either stays the same and the only choice is to deal with symptoms, or grows and the symptoms worsen (as mine did this year), and/or the surgical option, which has its own risks . . . including permanent or exasperated a symptoms!

In the past few days, however, I've become more at peace with the surgical option. I already know what it's like to live with the tumor, and I'm not happy this way. Now that it's grown, it seems likely to get worse not better. Surgery is the chance I have to stop or reduce symptoms, so I'm getting ready and hoping for a good recovery.

I wish you luck, and hope you and your docs come to a solution that works for you. Maybe we should stay in touch since our situations are so similar.

[Bichondaisy]

I’m in my case he say surgery is going to be a lose/lose scenario because due to the scar tissue and cavity that will be left it won’t cure the visual disturbances so hoping that it won’t grow and that if it has the radiostactic surgery will decrease it At the moment I can live with it as the Keppra has taken care of the eye seizures and another drug has reduced the pressure in my head but still have trouble with my vision so cannot drive

Think it might been easier just to have the op now and not have to have all this and still end up having it further down the line

I’m in England by the way and yes please let me know he how the op goes in case I end up having it as well. All the best

[BikeReadWashRepeat in reply to Bichondaisy]

It is really interesting to me how differently treatment happens in different countries. As one other person pointed out, all decisions about my situation have depended on one doctor at a time, not really a team. I haven't even been given the option to try to manage my symptoms other than to increase medicine to treat the pain aspect of the headaches. As I'm sure you understand, the worst I'm dealing with is not the pain but the visual disturbances, dizziness/vertigo, and the frequency of headaches rather than just their intensity. I wish someone along the way would have tried to find solutions to my symptoms while we were in the W&W period.

I'll keep you updated and am hoping the best for you moving forward!