Meningioma: Anyone else? I'm frightened

Yes, I had a meningioma. I first noticed something was not right with my vision in summer of 2007. My left eye was seeing thing 'too bright' .I could have worn sunglasses with right lens removed. My ophthalmologist thought is was just 'dry eyes' and to come back in 2 months if no improvement. Next visit , I did a 'field of vision' test and found the bottom left quadrant was extremely diminished. 'More eye drops were needed' was the prescription.
In January, I could smell a natural gas leak in my house. The gas company inspector came right over but could find nothing leaking. I went out to the library and grocery store. Yes, I could smell nature gas leak in both of them. I knew the whole city was going to explode.
Next visit in February, I suggested an MRI. "No, No. No, That's too expensive. It must be 1 of the 1643 diseases of the eye". I got an MRI. the following week on "Hypochondriac's Night". I came out of the MRI and there were 6 doctors there to hold my hand. '"Don't worry about a thing son, It will take a month for a radiologist to read it and another month for your doctor to get back to you". That night , in bed, in the dark, with my eyes closed, I noticed light in my left eye as if I had left a light on in the house somewhere. That was the tumor pressing on the optic nerve. Next morning, the phone is ringing at 8 am. It's the ophthalmologist's office wanting me to come in for a little discussion . The news was that I had a tumor, and to see a surgeon. After lunch , a surgeon phoned and wanted to meet, NOW. The doctor who had done over 700 of these types said that is must come out. They bumped everyone on the surgery list for me . The doctor said "be to the hospital by 7:30 am. -In by 8, out by noon.". By 4 pm my other have was worried, and phone the hospital. The surgeon said that the tumor was big, hard as wood and full of veins. They finished at midnite,16 hours and only got half of it. They told me to book another surgery in a month. It took 10 months to get back in for another 16 hour surgery due to patients
having more serious needs that me. The tumor ate through my olfactory nerve so I can't smell or taste anything.
That's what causes the sensation of 'nature gas leak'. Others report a smell of burnt toast. I still have a residual tumor , slow growing. There's lots of room for it to grow . They said "Your tumor was bigger than a golf ball , small than a tennis ball". My 'field of vision' tests still show the diminished left eye. Moral of story, Get an MRI if you've got a medical problem that isn't getting better. Doctors are only human and they make mistakes, too.

I had GK surgery (single treatment) about 1 1/2 years ago. My meningioma was 4+ cm near the optic nerve. I researched clinical papers and found the upper limit for GK is 4-5 cm now. The 2.5 cm limit seems outdated. I’m sure that depends on location but I have been symptom free since then.

ninha: Wow, if the neuro oncologist, whose job it is to oversee radiation of both benign and malignant brain tumors, recommends that you go with surgery, I'd really listen to that. I just read a book published in 2024, written by a neurosurgeon, who states that 2.5 cm. is about as big as you want to go to have the radiation. ( My neurologist said 3 cm. but he's not the expert in the field of neurosurgery.) I'd have to go back and reread the chapter as to why radiation is less effective once the meningioma grows past a certain threshold. I was also told, by a neuro oncologist , that he would schedule the radiation 5 days in a row, Mon.-Fri., and I'd be done. The reason I did not choose stereotactic radiation was as follows per what I was told by the neuro-oncologist when I asked for post radiation symptoms/problems:

**Whatever symptoms you are already experiencing the radiation won't negate those. The purpose of the radiation is to stop the growth/possibly shrink the meningioma but I was told once a particular symptom presented itself that would not go away because of the radiation. But, removing the meningioma would resolve my symptoms.

**The main reason I did not want to have radiation is b/c the neuro doc told me there was a
5 - 10% chance that the radiation would cause necrosis-meaning some brain tissue dies and becomes necrotic. Then you would either have to have surgery to try and remove the dead tissue or you would also have to go on steroids long term. I saw what steroids did to my father when he was on them long term for lung cancer and I didn't want to go that direction, take that chance of being in the 5-10% range of developing necrosis. (In all fairness, another neurosurgeon quoted the necrotic rate at 2-3%)

**As you know, I did have a full on craniotomy and had my entire 2.7 centimeter removed. I was only on steroids for a month b/c any brain surgery will cause swelling and that is the post surgical standard. I have posted before the craniotomy was NOT the nightmare I had envisioned. I am so glad it is OUT of there, and not still sitting in my brain shriveled up, not growing, but still there which would be the case had I had the radiation. I was 71 when I had the craniotomy and my benign tumor, a.k.a. meningioma, was in my cavernous sinus, a difficult location that both my neurologist and the neuro radiologist said they couldn't imagine a neurosurgeon attempting to remove it. The neuro oncologist you consulted is basing his recommendation on your age and the location of your meningioma. Count yourself lucky that he thinks it's in an accessible location. Count yourself lucky that you're young and healthy and will probably sail through brain surgery, as I did. (Well, I did have double vision for 3 months but that was only b/c the growth was 1/16th of an inch from my optic nerve and the nerve was inflammed from the surgery, not cut, therefore it healed on its own in 3 months.) I would keep in mind that someone posted a few weeks back that 20+ years ago they had radiation for a meningioma and now they have been diagnosed with brain cancer. That person was wondering if there was a correlation between the radiation they received years ago and their current brain cancer diagnosis. That is not far fetched. I have read multiple times about having radiation for a given medical problem and the risk of cancer because of it in the future. Of course, I am sure the risk is dose dependent to a certain extent. I will close by repeating what I stated at the beginning, that is if the neuro doc whose job it is to oversee radiation of meningiomas but suggests surgery would be the best option for you, thereby handing your care over to a neurosurgeon, I would trust his judgement and at the very least consult with a neurosurgeon. I'm sorry you're having to go through this decision making process. I found it stressful.

I had one in April 2022. I understand every person’s results are different. Benign meningioma was successfully removed. I woke up with drop foot and possibly neuropathy. My sister, an RN, suggested possibly that restraints on arms/legs surgery were not routinely loosened and retightened. For blood flow. I guess I would make that a point to doctor. Be your best advocate.

3 years ago my meningioma was discovered by accident. I had a dvt in my left leg - then checked lungs had pulmonary emboli in both and then checked my head. I had a 2.8cm that as far as I know was not causing me problems. Went on eliquis for the PE's and took the wait and see approach for the meningioma. had MRI's every 6 months and now it is 4.3cm in my cerebellum. I am 68 years old. I play doubles tennis 4x a week. My dad had a similar meningioma 30 years ago but with balance and vision symptoms. The surgery was successful but the swelling in his brain was not treated timely. So my main concern going forward is for a team approach whereby something like swelling or more PE's are treated right away.I've gotten 3 opinions and all agree that surgery (craniotomy) is next. They might not be able to get it all so radiation would be in my future to make sure what was left does not grow. The surgery is now scheduled for Feb. 18.

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.

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 gdcf03,
I am a 10yr survivor-thriver of a spheno-orbital meningioma with cavernous sinus involvement and underwent a craniotomy and cranioplasty.
As the founder of a nonprofit that provides support to meningioma survivors-thrivers , their families and caregivers, I know all to well the long term effects of this brain disease with or without treatments.

Doctors (nerosurgeons, neurologists and very few researchers) know very little about meningioma brain rumors because it is not studied or researched in standard fashion like many other diseases that primarily affect women.

The term benign only mean non-cancerous cells are presented. It doesnot mean that tou are cured from this brain disease. There is no cure for menigiomas and they do have a recurrence rate even after treatment, some 5, 10, 20 yrs later. Once can't be cured from an illness when the cause of it has never been determined.

What neurosurgeons never share with meninioma survivors-thrivers are the long-term deficits that you will have from this disease and how they are never talked about them as part of your care plan. I have thousands of testimonies that when direct questions are asked like "what happens are my treatment"; "will I be able to", " will the meningioma return" etc?

The neurosurgeons, neurologists and meningioma brain tumor resesrchers that provide collaborative services to my nonprofit have never reported a meningioma death case. So I am profoundly curious as to where the doctor that proclaimed that if you opted not to have a surgical procedure to treat your meningioma, that you would be dead in 2-3 yrs. There is absolutely no known reseach that have correlated, associated or supported meningiomas with imminent death. NONE!!!

More advocacy, awareness and support is needed on and abour meningioma brain tumors.

Go well...