Watch and wait

[Limegreen2024]

Hi

I’m new to this forum. I was diagnosed with a 3cm benign Meningioma last March after suffering with severe vertigo.. Saw my Neurosurgeon last month for a follow up and he has advised me he doesn’t want to operate just now but I should be on watch and wait with a follow up scan in November as I haven’t had many symptoms.

Feeling very anxious about the whole situation although symptoms aren’t too bad apart from my balance. Also seeing an ENT surgeon for my vertigo in a couple of weeks.

Watching and waiting feels like living with a ticking time bomb although really scared at the prospect of a craniotomy!! So hard to come to terms with just not knowing what lies ahead.

Sorry just needed to sound off!

[nidhi123]

I know it's scary to know that you have a brain tumor. Fortunately, you have a benign meningioma. If you don't have severe pain and symptoms, then it's better to wait and watch rather than go for a painful craniotomy. I went through a craniotomy in 2020, was diagnosed Atypical Grade II meningioma, and went through cyber knife radio-surgery. A recent MRI (January 2024) showed 3.4cm Cystic encephalomalacia along with a small cystic cavity of 1.8 cm. Yet my Neurosurgeon suggested me to wait and watch.

[Limegreen2024 in reply to nidhi123]

Hi

Oh my word what a journey you’ve been on. Really feel for you. I think I will go with my Neurosurgeon’s advice for now and just hope my symptoms don’t change or worsen. So difficult though. Either way is hard. Not a decision I want to make either way. Just trying to stay positive and not let this consume my thoughts.

Thank you

You stay strong too.

[Pasta66]

Hi I know you must be really scared and worried about your diagnosis. I was diagnosed with a benign optic nerve sheath menigioma in June 2022, my symptoms were gradual sight loss in my left eye, headaches, nausea, balance issues. I was operated on in July 2022, my sight was saved in my right eye. I had a crainiotomy. It took me time to recover but I got through it and though I still feel tired and have some other issues with balance etc I'm so glad I can still see. If your neurosurgeon said to wait and see, that will be because they'll not do anything until they may need too. You could speak to your neurosurgeon about your fears. The brain tumour charity also offers counselling and support. Please know that I was scared and anxious too, but I got there with support from friends and family. Take care.

[Limegreen2024 in reply to Pasta66]

Hi

Thank you for your understanding and kind words. It’s nice to know I’m not alone and that other people have experienced the same fears.

It’s just knowing how to navigate my journey. I am so pleased that you are making a good recovery. You’ve really been through it bless you. I think you’re probably right I should probably listen to my Neurosurgeon’s advice as I would like to think the consultants have our best interests at heart.

Thank you again.

[Prairiehill]

Sorry to hear that you have to deal with a meningioma. I had a 4 cm meningioma and chose to "watch and wait" because I was frightened of the prospect of surgery. I waited too long and went from having just a few symptoms to one day having a grand mall seizure which almost took my life. If you chose to wait, have an annual MRI and review it carefully with your neurosurgeon. At the first sign of any edema (swelling) adjacent to the tumor you should seriously consider surgery. Edema indicates that your brain is reacting to the meningioma and that things can go from bad to worse very quickly. Good luck.

[Limegreen2024 in reply to Prairiehill]

Oh gosh to hear that you nearly lost your life because you may have waited too long! Really scary. Hopefully you’re on the road to a full recovery. I am aware of the oedema situation - so far no sign 🙏. I had 3 scans last year, the 1st one was without contrast so had to have another with contrast which confirmed the Meningioma but then my consultant wanted another follow up scan last November to see if there had been any change. Fortunately the position is stable but I will be having another scan this November so that will a year on. I will take your advice and closely watch my symptoms. Do you think I could request scans every 6 months or is yearly enough?

Thank you so much for your advice. Really appreciate it. Take care.

[Prairiehill in reply to Limegreen2024]

My neurosurgeon wanted me to have an MRI every 6 months but I held out for once a year because having an MRI is no picnic and I get very nauseous from the contrast die. If you handle it, 6 months is preferable. Another thing I learned along the way is that just because your meningioma is not enlarging does't mean you're in the clear. Mine stayed the same size for 4 years, then all of a sudden within a few months major swelling occurred and symptoms abruptly increased. My surgery went very well with no lingering effects.

[Limegreen2024 in reply to Prairiehill]

I agree I don’t enjoy the whole MRI process - not a pleasant experience. I am not sure if my consultant will allow me to have scans every 6 months - maybe will just go with yearly for now but I’m am definitely going to be keeping a close watch on my symptoms. As you say you can’t just assume everything is ok because there has been no enlargement. Worrying times. So pleased to hear your surgery went well.

[Satishouse]

Hi I am sorry for your diagnosis. I had a 4cm menengioma and craniotomy on 9th Nov having no symptoms but 1 seizure in August. I have recovered really well and went back to work full time after Christmas. I found the waiting the worse experience, not knowing.

[Limegreen2024 in reply to Satishouse]

Hi

I am so pleased your recovery has gone well. That’s great news and I wish you all the best for the future. You’re absolutely right not really knowing what you’re are dealing with is the worst but hearing your story is reassuring and gives me hope when I’m told surgery is the next step. It’s not like I haven’t been through surgery before as I had a hip replacement back in 2018 although brain surgery is a whole new ball game but knowing other people have had successful outcomes really helps me navigating my journey through this. Thank you so much for sharing your story.

[Simply71]

The waiting is the worst part of the diagnosis. I was diagnosed in September and have now seen a neurosurgeon who has put Me in for an operation within the next 6 months. I was lucky enough to have a fantastic GP and joining this forum helped and reassured me about a lot because it is all the unknown. Hoping everything goes well for you.

[Limegreen2024 in reply to Simply71]

Thank you for your understanding and making me realise that having a forum like this really helps. It’s great to connect with people who genuinely understand your anxiety. Hope the op goes well for you. Likewise, wishing you all the best for the future.

[Moby50]

I was on watch and wait for nearly 9 years when I was suddenly told I needed surgery. I then had to wait on the waiting list for a year for surgery. My surgery too was last year but I wish I’d pushed for the surgery back at the beginning. My tumour was more deep routed than the mri indicated and I have been left with many complications which for me have changed my life for now at least and are incredibly frustrating. I’m now working with an amazing team with the brain injury team but go with your gut. I wish I’d gone with mine 10 years ago and pushed for surgery at the beginning. But hindsight is a wonderful thing.

I’m not trying to scare you, just to say you know your own body. Technology has it’s limitations you’ll know when it’s right for you.

[Limegreen2024 in reply to Moby50]

I’m so very sorry to hear what’s you’ve been through. My heart goes out to you. We can never really know things will turn out, like you say hindsight is a wonderful thing! I think we have to be kind to ourselves. We put our trust in the medics but maybe we should trust our gut as you say. We live and learn don’t we. Thank you for your being so honest and open about your journey. So pleased everything is coming together for you. Wishing you all the best for the future.

[Cast_away]

Hi

So sorry that you are feeling such anxiety. I was diagnosed with a 6cm meningioma in September 2022 after showing symptoms of confusion like dementia. I was not put in a watch and wait as my brain was also under pressure from oedema so needed emergency craniotomy.

The watch and wait is very difficult I am sure and the symptoms unnerving.

I understand that meningiomas typically grow very slowly hence a watch and wait strategy can help avoid major brain surgery and symptoms may be managed in other ways.

My thoughts are with you and if you need to ask any questions about my experience then please do if it helps to talk.