My GP called me today about my MRI results and I have been told they think it’s a Meningioma tumour in my frontal lobe. Didn’t even ask the size as was in shock. But my only symptom is Pulsatile tinnitus.
Apparently my scans are going to be reviewed by the team on 23rd December and I should then be contacted to discuss options treatment etc.
Not sure what to tell my employer at this point or if I can still drive as no other symptoms. And worried about how to tell family members in particular my children
Can you anyone offer any advice and share their experiences of these types of tumours?
2 years ago I had a benign tumour in my lung and had to have lung surgery, so getting this news was just awful. I was told at work and had to sit all afternoon trying to keep it together
Written by
Becky130777
To view profiles and participate in discussions please or .
My driving license wasn't taken off me till after surgery it that's any help?
I was informed of mine whilst at work and informed my employers immediately. They needed to know because of the time I was going to be taking off work.
Sorry to hear your news, I really understand what you are going through.
I was given my Meningioma diagnosis over the phone by my GP after my MRI. He told me then I couldn't drive, but perhaps because my symptoms sound different to yours. What lead me to having a MRI was a night time seizure.
I did tell people pretty quickly and that helped me as it explained some of my behaviour, absences, appointments etc. For me it was easier to explain to everyone in one go, so there wern't people I had to be quiet around. Everyone was lovely, supportive and helpful.
I was only told the size of the tumour by the neurosurgeon when we were talking about treatments. I'm glad I wasn't told earlier to be honest, it would have scared me even more!
It is a tough time, and so much to think about. I'm lucky; I was diagnosed 2 years ago and have had surgery. It's been a tough couple of years but I feel better and happy to be the other side.
Thanks for sharing your surgery experience,and I’m glad you’re feeling much better now and this gives me hope because i got diagnosed on the 26th of November and got operated on the 30th of December all this year 2022 and came back home Xmas eve to my children 😊i was a nerve wreck when i hit the news of my MRI results because my only symptoms were terrible headaches that lasts a week which no paracetamol could stop, but then after i had a near falling experience at work, but what really took me to my GP was early morning saliva mixed with traces of blood and i wasn’t able to read levels or references on articles in the boutique i worked because I’m a sales assistant at luxury stores in Paris France 🇫🇷 so even with my recommended glasses,my vision was badly affected, so my questions to you please are after this surgery,what should i expect since I’m freshly out of surgery room (3 days) ago,and honestly i hadn’t been given what the do’s and dont’s except post surgery medications and an appointment due only in February next year,so I’m really just brain storming here and in so much doubt,i will honestly appreciate your sincere advice and help me with the questions in my head by putting me through how your healing post op lasted up to 2years? I’m alone with my children, and this is a new discovery in my life and the surgery was decided very fast as it was 7cm and my doctor with the neurosurgeon were both concerned about how long it’s been there without serious symptoms though it was a benign tumour in front of my right frontal but surrounded my brain 🥲so it was a sudden discovery and needed to be operated quickly before it starts moving towards the cervical they both said,I’ll really like to hear from you soon to know what i have to be doing or not,also to know if i would be able to go back to work once my sick leave is lifted off in February next year,thanks for the patience for reading from me,it’s quite long i know,i wish you a blessed new year in advance and a healthier life to us through out the rest of our existence 🙏🏽🫶🏽
I know we are all different, but it was a good 6 months before I was close to functioning near to normal. For a week or two after surgery I felt an uplifting buzz in myself (my body reacting to surgery and me feeling so relieved it was over) and thought I was better! I was lucky that physically I recovered quickly, partially due to the joys of having longer hair to cover the scar. However my mental recovery was slow, much slower than I thought it would be, even though I had been told it would be. For weeks I couldn't read or concentrate. For months I was struggling to find words. I was also mentally tired for months. It was nearer 12 months post surgery for me to feel healed.
The most important thing I was told time and time again was to listen to my body and react. If I was tired, rest or sleep. If I was struggling to read or talk, rest or stop. For me it helped if people knew what I had been through because I'd just say, 'sorry my brain's not working' and they didn't ask more! I found it really hard to communicate or be with people I didn't know.
We all have different reactions to our meningioma depending on where it was, the size and which bit of our brain it was putting pressure on. This makes our recoveries are different too.
I would suggest to you to listen to your body, let yourself rest, stay calm, and don't push yourself too much or too fast. Give yourself time.
I hope my experience helps you a bit. Just give yourself time, don't rush things too much, try to remain positive.
WoW,iam very grateful for your rapid reply m’am thank you so much for sharing your experience with me, and iam going to be doing exactly what you said, which is taking my time and listening to my body,yes it’s true that I feel so argile and ready to be back on my feet career wise,the méningiome was situated at the frontal right side of the brain and it was 7cm without so much symptoms than very severe headaches resistant to pain killers and vision blurry,thanks so much for taking time off your busy schedule to reply and iam feeling better already and looking forward to getting back to work and living my best life,do have a blessed day ahead and a wonderful new year soon 🤩🫶🏽
that sounds rough! And a tough thing to hear over the phone at work
I also had a meningioma over my frontal lobe (and a bit over my parietal lobe). I was diagnosed in the emergency room and had surgery 6 days later as I had a high risk of seizure and it was putting a lot of pressure on my brain. (I’m in Canada in a relatively big city). I wasn’t allowed to drive after the diagnosis because of the seizure risk but I know that’s not the case for everyone. Mine was almost 5cm. I know some people with meningiomas are out on watch and wait if they are small, as they often grow very slowly
I had a baseball size meningioma removed March 2021. Was found by accident, I thought I had bad allergies and was getting a lot of headaches. I told everyone immediately, 3 children, 7 grandchildren. I am now 68 years old. I returned to work and back to life very quickly with no disabilities. My best advice, Stay calm and positive. and if so inclined, Pray. I had a mild seizure 1 month after the surgery, two weeks after 1st Covid vaccine. Did not have another vaccine. They put me on Keppra and I lost my license for 6 months. Got it back and off I went. Best of luck to you.
I’m sorry to hear you have to deal with this. I surrendered my driving license post surgery. To help you make a decision, I would write a list of questions to ask at your consultation so that any decision you make is an informed one. You can ask to record it and have someone present. I hope that your employers will be supportive while you go through this difficult time. I wish you well.
There is no need to rush into telling people, especially before you have any information. The thing about meningiomas, which is difficult to deal with at first, is just how slowly everything moves with treatment. This is because they normally grow extremely slowly, and treatment can be risky. Doctors don't want to do anything risky to someone who is perfectly healthy, so they often choose to "watch and wait". So wait until you've spoken to the neurosurgeon, then make a plan for who you want to tell. I didn't really tell anyone until an op was planned. My kids were young and it seemed very abract to them. I still don't think they really get it, but the op was a big deal for them.
You are obliged to inform the dvla about your diagnosis, although again, wait until you've spoken to the NS to get confirmation of diagnosis and their assessment of the grade. You will still be able to drive assuming you have no seizures or vision problems, and it's grade 1 (slow growing). I had to stop driving for 6 months after my op.
Good luck with the next steps. It's quite a thing to learn about at Christmas. I highly recommend the Meningioma Support Group run by The Brain Tumour Charity on Facebook.
many thanks for reply I have joined the facebook page which I have found very helpful. I feel slightly in limbo at the moment, so hoping once I speak to the Neurosurgeon they can give me more information on where it is and what treatment plan I could have if I have symptoms
I can empathize with what you are going through. It is similar for me. I learned via email reading the MRI report while away from home on a work trip. Ugh.
The MRI came after absolutely wretched post-COVID migraines that were continual.
I have chosen to wait to tell my employer until after I get a second opinion. Mine is millimeters in size, but I want it out. The first neurologist I saw recommended watching and waiting. I fear getting surprised by symptoms but don’t particularly want surgery either! It’s quite the conundrum.
I am not fortunate enough to live in a country that really supports the I’ll very well, so I am worrying about how much the surgery will cost and how I will be able to afford living without working. I’ve shied away from the Facebook group due to privacy concerns, nevertheless. I even wish that healthunlocked encrypted their emails, as I am not wild with my email provider knowing this sensitive information about me!
I wish you all the very best on your journey. Do keep us posted.
many thanks for you reply. I have the same concerns, I only have the Pulsatile tinnitus at the moment and worry about other symptoms going forward. Wishing you all the best with your journey/treatment
Why don’t you trust your neurosurgeon who has advised a watch and wait regime? My wife was diagnosed with a small meningioma 10 years ago and the neurosurgeon also advised against surgery due to possible complications. In fact he went so far as to say that it was highly unlikely that the meningioma would ever cause problems. Sadly there are many people who suffer severe symptoms from meningioma but equally there are many people who are able to carry on with their normal daily routines, including many who have small meningiomas but are never even diagnosed with the condition!! Symptoms are not inevitable and every case is different! You just need to trust the professionals!
Hi many thanks for your reply. My GP has advised me I am watch and wait from an update provided from the hospital on reviewing my scans. So I am still waiting to get my appointment with the neurosurgeon. So hopefully when I see them, they can answer my questions and worries. Feeling abit in limbo until I see them.
I want to hear the opinion of another professional. That thing is small, but I don’t particularly want to be surprised with symptoms…I’d rather have it out unless there is a convincing reason not to remove it.
I have no way of knowing if mine is like that of your wife’s.
I’d appreciate your respecting my choice rather than demanding that I take a certain course of action.
Hi Trvir I have to say that I was surprised at the tone of your response to me. I have re-read my post many times and I cannot see any statement or implied statement which in any way ‘demands’ you take a particular course of action. I have categorically stated that my wife’s experience will not be relevant to everyone suffering from a meningioma. I have simply ‘suggested’ and not ‘demanded’ that you heed the advice of the professionals.Also was it really necessary for you to pick me up on the difference between a doctor and a surgeon? At the end of the day no one has forced me to take the time to share my experience on this forum and if you in any way disagree with my posts please do so without resorting to sarcasm!
First of all there was zero sarcasm in my response. Second of all you stated: “You just need to trust the professionals!” That’s a demand. Getting a second opinion doesn’t mean I am not trusting them, it means I am being cautious and exploring options. Third, I wasn’t “calling you out” about the dr., rather correcting your erroneous assumption.
I was diagnosed in May 2021 with a Satsuma size Meningioma on my left size sphenoid wing.
I suffered a partial seizure at work, I am a London Firefighter.
I declared my driving licence, as made getting it back after surgery easier.
I was off the road for 10 months.
I did on return of my licence lose my HGV Cat 2 licence, but I can reapply for that. All dependent on work and driving.
I'm just in the unfortunate position that due to my tumour and surgery, my Occupational Health for work have said I cannot return as an operational Firefighter.
This is a battle/appeal that I will be facing in 2023.
As I have been in contact with a Firefighter who has had 2 craniotomys, and is working operational again.
Regarding telling children, mine were 8 and 11.
I explained to them that I had a bruise (Not tumour)in my head, that had got to a size that was touching my brain.
I had to explain why I had stopped going to work, as they were use to my shift pattern.
I also got diagnosed of a blood cancer when I went in for my brain surgery 1st time, which meant I was discharged following day.
That was a shock as said goodbye to family for 5 days in hospital.
My bloods had to be dealt with before my craniotomy.
So was put onto chemotherapy tablets for 3 months.
Hello thank you for sharing about your diagnoses and good news the surgery went well . Hoping my appointment with the neurosurgeon comes through soon so i can find out more about the tumour, all I know is it’s left frontal lobe and around 2.7cm by 1.3cm
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Flight attendant with Meningioma 
Meningioma pressing on optic nerve 
Eye sight post meningioma removal
Looking for alternatives to surgery as options for benign meningioma
Advice would be appreciated 
