Should I choose to do surgery right away or wait a while?
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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I'm not even sure a neurologist can even advise you regarding surgery under the scope of that specialty.
I think it's great the NEUROSURGEON said to wait 6 months and then revaluate. It's really not up to you or the neurologist whether you'll have surgery or not because the neurosurgeon operates at their own decision. You can't just go in and tell them to perform brain surgery. They have to decide whether it should be done. They base this on many factors. Maybe a different neurosurgeon would have a different opinion. That's when you'd have a choice to make in this. Right now, you don't have a surgeon ready to operate at this time. The 2nd neurologist won't have an influence either bc neurogists don't do any surgery. They can't direct a brain surgeon to do brain surgery either.
How all goes well. You have 6 months to think about possible options. This forum is a great place to learn much in 6 months.
In the meantime, you can benefit from your other non surgical options. And you may possibly learn of additional non surgical options from this forum.
It's definitely scary. But the more information you obtain, the more you will feel in control of your life and the more confident in your decision-making, and the less helpless you will feel.
Sorry you have to walk this path. But with Connect, you don't have to walk it experientially alone.
Try to relax a little since you're not under pressure for an immediate decision.
The one who has the expertise in surgery (vs not or other options) is the neurosurgeon. Not the neurologist. You need a 2nd neurosurgeon opinion, not a neurologist opinion. Huge difference. Huge.
I saw one neurologist and he advised me to go thru surgery right away. Then I spoke to a surgeon and he’s advise was to wait about 6 months depending upon my symptoms. I am also scheduled to see another neurologist in a few days.
What had your Dr advised? Have you sight a 2nd professional opinion?
Thank you!
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!
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!
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!
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.
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?