Should I choose to do surgery right away or wait a while?

Posted by gdcdf03 @gdcdf03, Sep 28, 2023

I was diagnosed with having meningioma measuring 2.9cm in the left posterior fossa. There is focal mass effect on left pons with suggestion of impingement of the cisternal segment of the left trigeminal nerve which causes jolting pain in my jaw. I have other symptoms such as vertigo and tinnitus. Surgery was suggested but I am 52 yo and scared to go thru brain surgery. Nerve blocker can manage my pain but I dont want to take it long term. Has anyone went thru similar surgery and can tell me what it’s like? Should I opt to do surgery or no?

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My wife had brain surgery to remove a tumor of similar size on July 6. The surgery went well and the surgeon said he got all of the tumor he could. Her recovery from the surgery was remarkable as it was on July 6 and she left the hospital on July 8 after on two nights there. Her recovery at home was uneventful and she had little pain which was managed by meds for a week or so before she was off those and onto over the counter pain meds. The surgery itself was not extremely difficult for her. The diagnosis of the type of tumor is the most important point in my estimation, as that dictates the follow up care. The direction of the surgeon as far as what they feel they can remove and what side effects are the important factors in the decision. In my wife's case, there were no real side affects from the surgery itself. If you are not confident with what the surgeon is telling you get a second opinion before proceeding. Wishing you success and may God bless you.

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Thank you for your response!
Glad to heat about tour wife’s successful surgery…The surgeon is giving me 6 months to sit on it, also to find out how fast the tumor will grow. Its been a couple months since we’ve discussed it but I am seeing more changes/symptoms so I feel like if I wait and the tumor grows, I’d have more problems. But if I go thru surgery, i’m worried about the ‘what if’s’ since the tumor is pressing on the pons, putting pressure on my trigeminal nerves.

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I also have a meningioma and my surgeon has suggested waiting 6+ months and checking it every 3 months for any growth or changes in it. Mine causes nerve pain up the back left side of my head when I move my head different ways, and some unsteadiness on my feet.

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@birdie1234

I also have a meningioma and my surgeon has suggested waiting 6+ months and checking it every 3 months for any growth or changes in it. Mine causes nerve pain up the back left side of my head when I move my head different ways, and some unsteadiness on my feet.

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I’m sorry about your nerve pain. It’s a horrible pain. What medicine were you prescribed to manage the pain and does it help?

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@gdcdf03

I’m sorry about your nerve pain. It’s a horrible pain. What medicine were you prescribed to manage the pain and does it help?

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No serious pain meds......just Advil. I may have to in the future but so far ....so good. The pain comes and goes and hasn't been earth shattering as yet......and I'm hoping it won't be. My Mother had Trigeminal Neuralgia...(Tic-dela-ru) in the 70's and had hers operated on ( in Rochester N.Y. ) and never had another problem with it.

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I had a3x2 cm meningioma resected a year ago, then a second one grow and I underwent surgery again this past summer. Several points will count on your decision like someone described above. From my review of studies, surgery continues to be the cornerstone for the treatment of meningioma tumors, followed by adjuvant radiation when needed. Very important to consult a second opinion, and frankly very common in medicine and nothing wrong with doing it. The type of tumor is very important, but you will find this after you have done surgery, and they sent the tumor to pathology. Most of these tumors are grade I or benign but some are grade II, like mine, which can regrow in adjacent areas as they have a more aggressive molecular activity. So hopefully yours is benign but they can grow to press in important structures in your brain, so very important to be monitored for growth and symptoms. My recovery went really well. No pain. I did some physical therapy as my balance was affected due to edema cause by the tumor on my brain. I still have a remaining that was near to my optic nerve that could not be removed, and I will be undergoing radiation soon. Wish you the best on your journey and keep in mind to live your life and keep strong!

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Everyone's story is different, so I don't know whether this will be helpful. Some years ago (when I was 60) I had a bump on my skull that caused no symptoms. After I started having fleeting "ice pick" headaches, I decided to have it checked out. It was a fairly large meningioma that had broken through the brain lining. Because I was experiencing symptoms, after consultation with my surgeon, I decided to have surgery. My reasoning was that it would not go away on its own, and might be growing. Because I had symptoms, I decided there was no upside to waiting, and surgery might become riskier over time.

I was quite frightened, but the surgery was successful. Some of the tumor was close to a central blood vessel and could not be safely removed. As a result, the surgery was followed by very intense, directed radiation every day for a week. The whole experience left me a bit tired (and with temporary hair loss), but I recovered and returned to work as a lawyer. Now, after 5 years of post-surgery MRIs, the doctors have determined the remaining tumor is stable, and I am not at increased risk of suffering a stroke.

Best of luck with your decisionmaking and I hope you have a successful outcome!

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@colom22

I had a3x2 cm meningioma resected a year ago, then a second one grow and I underwent surgery again this past summer. Several points will count on your decision like someone described above. From my review of studies, surgery continues to be the cornerstone for the treatment of meningioma tumors, followed by adjuvant radiation when needed. Very important to consult a second opinion, and frankly very common in medicine and nothing wrong with doing it. The type of tumor is very important, but you will find this after you have done surgery, and they sent the tumor to pathology. Most of these tumors are grade I or benign but some are grade II, like mine, which can regrow in adjacent areas as they have a more aggressive molecular activity. So hopefully yours is benign but they can grow to press in important structures in your brain, so very important to be monitored for growth and symptoms. My recovery went really well. No pain. I did some physical therapy as my balance was affected due to edema cause by the tumor on my brain. I still have a remaining that was near to my optic nerve that could not be removed, and I will be undergoing radiation soon. Wish you the best on your journey and keep in mind to live your life and keep strong!

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Thank you for the info and words of encouragement. I’m sorry to hear that the fight is not over for you. I hope everything goes well for your next procedure!

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@tucsonnancy

Everyone's story is different, so I don't know whether this will be helpful. Some years ago (when I was 60) I had a bump on my skull that caused no symptoms. After I started having fleeting "ice pick" headaches, I decided to have it checked out. It was a fairly large meningioma that had broken through the brain lining. Because I was experiencing symptoms, after consultation with my surgeon, I decided to have surgery. My reasoning was that it would not go away on its own, and might be growing. Because I had symptoms, I decided there was no upside to waiting, and surgery might become riskier over time.

I was quite frightened, but the surgery was successful. Some of the tumor was close to a central blood vessel and could not be safely removed. As a result, the surgery was followed by very intense, directed radiation every day for a week. The whole experience left me a bit tired (and with temporary hair loss), but I recovered and returned to work as a lawyer. Now, after 5 years of post-surgery MRIs, the doctors have determined the remaining tumor is stable, and I am not at increased risk of suffering a stroke.

Best of luck with your decisionmaking and I hope you have a successful outcome!

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Thank you!

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What had your Dr advised? Have you sight a 2nd professional opinion?

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