Meningioma: Anyone else? I'm frightened

My son lost vision in his left eye (at age 12). At age 27, he experienced worsening symptoms that finally led to the diagnosis of 3 meningiomas that had been growing for years. He had 30 proton beam radiation sessions, and now we wait to see if the tumors are dead. Due to the location of the tumors, they are inoperable. Unfortunately, at age 12, when he first had the MRIs, they missed the tumors. I regret that we didn't push more to find a diagnosis. He's had many health issues over the years, and now we are learning why. It's been difficult.

Thank you for your reply.. I'm still trying to get some solutions even after they found one in the cavernous sinus but they reassured me it has not changed since 2022 yet in the recent months my double vision and loss of vision has gotten worse. They have no action plan in place other than to watch and wait. I feel like I'm fighting a losing battle and fear of losing my eye sight.

helenbrown: I would take comfort in the the fact that, as you said, "they don't seem in a hurry to contact me..." Seems to me if the scan showed something super concerning that needed to be addressed immediately you would have been contacted by now. Keep communicating with the office to get what you need to ease the headaches so you can enjoy your trip.

Ive been told that it's about 2 inches big with swelling ive had this for a while apparently ive had a number of symptoms like left leg goes dead i get headaches and my balance hasn't been good for a very long time but they dont seem in a hurry to contact me after my second MRI like they was for the first they called me 3 hours after having the first.

I went on holiday for 7 days in November and I was fine, I just want them to help with the swelling to ease my headaches and they can do what the want when I get back

Helenbrown: It could very well be that whatever intervention is suggested will not be able to be scheduled until after your birthday trip. You didn't mention if your tumor is a particular type of tumor called a meningioma. If it is a meningioma, which is usually benign and slow growing, I would think your birthday trip would be fine unless the meningioma is pressing on a structure that is compromising your balance. You sure wouldn't want to suffer a serious fall. You should be able to talk to your doctor or his medical assistant for advice.

Hi sorry how long was you recovery

Hi I had a MRI 4 days ago I was called 3 hours after to tell me I have a tumor on the lining of my brain thats about 2 inches big which has some swelling and wanted me to go back in a day later to have another but to have the dye put in to highlight the bloody, so I did that now im just waiting. I'd love to know how long full recovery is as i have a holiday booked and paid for for the 13th (just over 2 weeks) for my birthday and dont want to miss it so does the recovery take longer. I'm hoping they can just control the swelling and remove it when I get back but I am so scared I'm scared to do anything right now in case I make it worse I cant even have a shower unless I have someone come and just sit and wait while I have it

Hi hiw ling did it take you to recover fully

Yes, thank you. I will have my 2 mri this next week (hopefully the insurance goes thru). I am planning to see a different doctor (neurosurgeon) because this neurologist can do nothing as far as removing it.

In Sept 2022 I was diagnosed with a 6cm meningioma on the right frontal lobe. Surgery a couple weeks later was successful to have it removed. Due to the size my Dr said he wouldn’t wait to get it taken out. If it’s small and considering it location and risks, radiation may be the best option. I am undergoing observation. Yearly now to make sure it doesn’t come back. MRI already on the dance card for March. Dr said if there would be any re-growth, chemo or radiation would be the suggested treatment.
My heart breaks for those who can’t have it removed and have to live with them. It’s not supposed to be there it’s not from our Father. My prayers go up for you all either living with them or treating them. Prayer also go up for the medical teams who are helping people with them.