frustrated

[Simply71]

Morning, I was diagnosed with a meningioma behind my left eye on the 19th of September this year, yesterday was my first meeting with a neurologist who was very nice and spent a good amount of time with me but knew nothing about me or my case as my lovely GP and his secretary pushed for an appointment due to nothing being done. Once I chatted with her I got very mixed messages from her and no actual answers and a prescription for medication I don’t think I need.Needing more scans and blood tests before I think I’ll get answers. Just very frustrated today and have been positive up to now. Sorry to ramble on.

[Bordermum]

It’s a lengthy process. I was diagnosed on the 1st of April . After batteries of tests I decided to go for surgery as it’s over 6cm! I’m now having surgery on the 29th of this month. It’s been a long long wait. Hang on in there. The frustration and anxiety is awful I know. But on this site we’re rooting for you.

[Simply71 in reply to Bordermum]

Many thanks for your reply it’s good to get an idea of the length of time that I could be waiting

[BumbleBee38]

I think it would be best to see a neurosurgeon. They can tell you what option you have in regards to surgery, wait&watch or radiotherapy. I was diagnosed by my ophthalmologist with an olfactory groove M that was pressing on my optic nerve and referred to a neurosurgeon immediately after. Had surgery 6 weeks later as radiotherapy wasn't an option due to size.

[Moby50]

hello I was on watch and wait for over 8 years and have just spent over a year on a waiting list waiting to have my craniotomy which I finally had earlier this month.

I’m still in hospital as it turned out to be far more complicated than the scans led the surgeons to believe.

My right eye is damaged and I’ve been advised it could be over a year before I start to see any improvement.

So patience is the name of the game and trust the team around you and never be afraid to ask for a second opinion so are entitled to it.

Good luck

[Simply71 in reply to Moby50]

Hoping you recover soon and an improvement happens after all you’ve been through.

[Moby50]

thank you.

If you have any questions don’t hesitate to ask however small as one of us is bound to have either experienced it or wanted to ask the same thing.

I’ve learnt nothing is ever to small or too silly. 🤪🤗

[Simply71 in reply to Moby50]

Thanks for up kind words, I’ve been very ok with it all till these last few days and now feel total wreck as was hoping to get some answers. But it feels very insignificant after everything you’ve been through.😊

[Moby50 in reply to Simply71]

Nothing is insignificant and no one’s journey is the same.

You’ll have days when it overwhelms you and those are the days to reach out to others that understand.

Friends and family will try and they too will find it difficult. But trust me what you are going through sometimes just can’t be put into words and then someone will do something that restores your faith in humanity.

Our car has broken down and the garage can’t fix it till next month so an amazing friend has lent my husband her car so he can do the 150 mile round trip to visit me in hospital. 🤗

[Simply71]

Ahh that’s so kind of them and what a journey your husband has to do. Hopefully you will able to go home very soon and recuperate in comfort.

Thank you for your understanding and not making me feel like I’m being over dramatic.

[Satishouse]

Hi I had my surgery for a 4cm front lobal menengioma on 9th Nov. I am recovering well and not in too much pain. I was very anxious and nervous, the waiting and unknown is worse. Everyone said to stay positive and that was good advice

[Simply71 in reply to Satishouse]

Hoping surgery went well and you’re well on your way to recovery.

[Satishouse in reply to Simply71]

Thank you, I have recovered really well, even returned to work a few days a week. Have you had your sugery yet?

[Simply71 in reply to Satishouse]

Morning, no I’m waiting to see neurologist at Kings in January to talk with about mine as it has grown slightly since last scan so surgery is now on the cards.