Occipital meningioma

[JaneWhiting]

Anyone here have experience of an M in this location? What symptoms do/did you have? Are you W&W or post surgery? Mine was detected in Jan 22. I wasn’t given diagnosis until Jun 22.,.via video conference. A complete shock. Have double vision which has been controlled by wearing a prism lense. Other health issues I have (related or not.?.) are; headaches, floaters in vision, pulsatile tinnitus, tingling/numb fingers/hand, jaw locking issues, painful swallowing, aching gum and teeth, fatigue. I am now suffering with anxiety as well. Have always be so positive but am struggling since diagnosis. Would like to hear from anyone with a M. Your experience so far. Tips. Hope that we can support each other and stay strong. Thanks 😊

[Lytham]

Hello, I am 13 years post op and had the double vision, headaches and dizziness which have all dramatically reduced since surgery. Good luck x

[Hidden]

Hi Jane, I am 62 and 10 years post-op. The initial tumour was a 10cm Occipital meningioma. Had a seizure at work, was taken by ambulance to the hospital and had MRI in ER. Was unconscious for most of the day and was told the news by a group of doctors soon after I awoke. My symptoms were 'Asymptomatic. Not the usual or normal at all. Severe back pain for years and very heavy menstrual flows. Experienced some dizziness more so after flying. Some throbbing in my head at night-time, just thought it was the overload of stresses of life at the time (can definitely confirm that fatigue has been an issue for me pre-op and post-op). Had craniotomy 2 weeks after diagnosis. Post craniotomy, back pain disappeared and no menstrual flow. The Neurosurgeon couldn't remove all of the tumour as it is attached to a sinus vein. Was told post-op it could regrow. I have had follow-up MRIs almost every year since then. The one taken 2 years ago, showed some thickening and the latest one was taken on 12/09/2022 shows it is now 1cm in size. Now on W & W. I am a bookkeeper and am constantly on the computer. My sight is fine most of the time, but I do have my days. I did lose vision temporarily in my right eye one night, but it returned thankfully. Went to ER and had all the tests done and they couldn't find anything. Post-op I had to retrain myself to type as what I thought I was typing was nothing like what I was actually typing. I am not going to lie. Life has been quite a rollercoaster ride. Our diagnosis does not stop life from happening around us. I have still been able to be there to support my husband (through his seizures and diagnosis of epilepsy - which all started 2 weeks after my op), my children, family, friends and clients. I am extremely grateful for so... many things. It is frightening, so please be kind to yourself. Don't give up. These tumours usually take many years to manifest, and I don't believe that stress helps at all. Take care and take it one day at a time.

[BikeReadWashRepeat]

Hi there. I remember the day I got that phone call: the shock is so rough! Sending you good thoughts and support.

I'm ten-months post op, and I had visual disturbances, floaties, dizziness, terrible (very intense) headaches, word searching, and definitely ffatigue. My occipital M was down deep and grew in towards the lobe and the lower sinus and ventricle.

BUT: my doctors (primary care, ophthalmologist, neurologist, and neurosurgeon) were very reluctant (stubbornly so) to say that any or all of those symptoms were tumor related. It wasn't until my tumor grew significantly more than expected in a year and my visual field test showed that I was losing a significant degree of peripheral vision that they decided surgery was the best choice.

Post op, many of my symptoms are significantly better or gone. The headaches are gone, and my gosh, I DO NOT MISS THEM! I have some residual visual issues: there's a spot of light permanently dancing around my right side, and i experience double-vision to varying degrees throughout the day. I struggle to read for long, which is really tpugh for me, but was happening before surgery too. Dizziness is now very occasional, and not as bad. I no longer worry about tipping over: I fell quite a few times in 2020&21.

I still have a portion of my M, nested up against a ventricle where its not safe to remove. My quality of life has improved since surgey, though, and I'm hoping it will be a long, long time before I need another if ever at all.