Brain / CNS Tumors Support Group

A brain tumor is any intracranial tumor created by abnormal and uncontrolled cell division, normally either found in the brain itself, in the cranial nerves, in the brain envelopes, skull, pituitary and pineal gland, or spread from cancers primarily located in other organs (metastatic tumors). Brain tumors may be benign or malignant.

126 Members

388 Posts

0 Online

LoopDLoop 08/30/2014

I have just been diagnosed with a fairly large (size of golf ball) Meningioma. I was sent for an MRI on 7th August '14 as I had recently been diagnosed with Meniere's Disease and was having lots of vertigo, dizziness, balance issues and tinnitus with some hearing loss so the ENT thought maybe I had an acoustic neuroma tumour. My Right ear was having fullness and feeling blocked several times over the last year or two and I had my ears suctioned to remove excess wax. The meningioma is located on the Left Frontal lobe and greater wing of sphenoid (behind the eye). I was spoken to immediately after the MRI by the neuroradiologist who read the scans and it was a huge shock but I was very grateful to be told straight away. He told me (as did the ENT and the Neurosurgeon I have since seen) that most times (85-90%) of these are benign but the biggest difficulty is the location of these tumours. The best option for me is surgery and I am booked in for this on 7th October. There is risk of stroke as this tumour lies on top of the main cranial artery, and there are some other complications. However I have done a lot of research and asked many questions which have been answered very openly by my neurosurgeon. I feel blessed that I am able to have this tumour removed by an extremely highly skilled and dedicated professional brain surgeon who is going to use the latest high-tech equipment (Stealth-guided craniotomy). Of course I feel nervous but I have a very strong support team of family and friends and I am determined to remain positive that my outcome will be successful.
Wondering if there are any other meningioma sufferers on this forum?

survivor69 08/31/2014

IN 2009 I HAD 66% OF A BENIGN MENINGIOMA TUMOR ON MY RIGHT FRONTAL LOBE REMOVED. (THE TUMOR WAS 6 CENTIMETERS IN SIZE.)
1/3 IS INOPERABLE.
IT IS STILL THERE.
U DIDNT STATE HOW BIG IT IS...............
IT TOOK ONLY 4 WEEKS AFTER THE SURGERY 4 ME 2 WALK OUT OF A REHAB CENTER AND GO HOME.
MAY THE GOOD LORD BLESS U AS HE HAS BLESSED ME THRU ALL OF THIS.
EVERYTHING GOOD IS FROM ABOVE AND EVERYTHING BAD IS OF THE DEVIL.
I DONT BLAME THE LORD 4 THIS BRAIN TUMOR.
EVERYTHING GOOD COMES FROM HIM.
BRAIN TUMORS R NOT GOOD.
MINE IS FROM THE DEVIL.
I WILL PRAY 4 U.

GBU
D
;-]

LoopDLoop 10/22/2014

I had my meningioma tumour removed on 7th October. It was rock solid and the neurosurgeon was able to totally remove the whole tumour. I have been home 11 days now and am feeling fine. My scar is healing well. The NS had to cut the muscle by my jaw so I am chewing gum to retrain the muscle. I have a few pain relief tablets but that is all. Cognitively I am excellent-such a relief!! I am sleeping lots but increasing my walking each day and getting better day by day.

wysiwyg 04/09/2015

Hi LoopDLoop,

I have just joined today and found this group. I too have a meningioma also on the left hand side but mine is behind my ear. I live in the UK and it took six years before I was taken seriously. In 2010 I finally had a tumour removed from my ear only to be told 18 months later it was not a paraganglioma but a meningioma and the part in the brain was still there. They will not operate on me unless it grows again. Last year I had Gamma Knife radiation and it does seem to be controlling my symptoms and hopefully it will remain as it is now.

I am so happy that you came through your operation and trust that you are now in good health.

Survivor 69 I hope you are still blessed and doing very well.

Hugs to you both.

LoopDLoop 05/21/2016

Thanks Wysiwyg and survivor69 for your messages. I have recovered well. I still have a few balance issues and vertigo episodes but my brain function is really good. I hope you both continue to recover well also on your journeys.

maria718 06/30/2016

Oh yes I had meningioma (I never heard of that word until I got it). I had my meningioma surgery in 2005. I had a slow-growing one, surgeon told me I had it all my life but it was VERY slow-growing. Needless to say it was huge too. A 7 hour surgery, and the surgeon had to leave a small piece of the tumor behind because it was near my left eye optic nerve. Well guess what in 2010 it grew back. Another surgery. Then the fun started. I had RADIATION in 2011 on my BRAIN to kill the remaining tumor cells. boy was that hard, plus I had seizures and was on seizure meds which was horrible. I am much better now, I've gone for MRI's for 5 years now, and it looks good. Still, I don't like the idea of a piece of that still in my head. I guess I will always be nervous that it will grow back, even though the oncologist told me that I have an 85% chance of it NOT growing back, those are good odds. I have to be optimistic. Needless to say, this whole experience changed my life. I was in my 40's, doing great, was really attractive, had a great job, was a single mom to a beautiful daughter, had a boyfriend and was making a lot of money. Now I'm on disability, and am only able to work part time. Still, I am making it and am grateful I am alive. I have to be here for my only daughter, we don't have much family or friends. I wish this had never happened to me OR you, but you will survive like I did. Be prepared for things being different afterwards, though. I know one woman here in NYC who goes to support groups for this. I did that also, that really helped. Stay strong!! And good luck, please keep me posted.

marip 10/19/2018

I was recently diagnosed with a posterior fossa meningioma. In a couple weeks I'll be seeing a specialist. It;s very small. What can I expect in regards to medical treatment. Will they do a biopsy? How often is a MRI done to watch it?

Join the Conversation