Hi Jo, I havent been able to speak to the surgeon and he is away this week. Nobody has mentioned a specialist nurse, I have called the surgeons secretary twice in the last few days though so darent ring again, I bet she is getting fed up of me.

Still no date for the operation either as the maxilafacial surgeon hasnt replied to the emails sent by the neurosurgeon 3 weeks ago!!  I just want it overwith now as it is all I think about and we can't plan anything for later in the year until we know when the operation will be.

I am definatley not crying as much but still so worried about all the things that can go wrong.

How are you doing?  x

Hi Charlotte,

Good to see your post. Oh boy, I know how you feel about wanting to get on with it so that you can start making plans.

Hopefully, with the Bank holiday well out of the way now, your Maxillofacial surgeon will communicate with the neurosurgeon and you can finally get an op date! I'm not sure whether every medical department/discipline offers a Specialist nurse, so maybe you won't be assigned one.

I'm fine thank you, but currently in that grey area I tend to think of as 'medical limbo'.  I had a PET scan last week and it showed hotspots in my lungs so this now means I need to have a CT scan to decide whether the hotspots are cancer, or inflammation!

I'm hoping it's residual inflammation from a chesty cough I had a few weeks ago! But it's just another wait to get the appointment through, have it done and then wait for the results!!

I also saw my colorectal surgeon today to discuss my stoma reversal, but this has lead to another appointment to have a barium X-ray to see if my rectal join from the surgery I had last September,  has any leaks! I feel like a washing machine being plumbed in!

I hope you hear something soon and remember, any worries you want to share, we're here for you.

Hugs, Jo xx

You have been busy!!  I hope that the scan comes back ok then and it is just inflammation and that you have no leaks

I just hope I hear something soon, the longer it is in between hearing from the hospital or having appointments the more life seems back to normal.  Although I'm always thinking about it, its hard to concentrate on anything else!!

Have a good day xx

Hi Yorkshire Pud - I hope you don't mind me writing to you, I know it's been a little while since you last wrote. I'm Andy, and have also been diagnosed with a meningioma - the neurosurgeon gave me his recommnedation (ie. surgery) last week, and I have been to-ing and fro-ing since then trying to make up my mind whether to go ahead with it. He also said I could wait, but it would have to come out sooner or later. So I don't know what to do, I feel as if the world has stopped, and if you don't mind me asking, was wondering how you are getting on, what your experiences have been.

Thanks

Andy

Hi Andy, it is a huge shock isn't it, i remember just how I felt when I was diagnosed! I had my tumour removed in June, everything went well and I was back at work at the beginning of September.   It was a seven hour operation and does have risks but it all went to plan!  Are you on facebook, there is a brilliant meningioma UK page (private so your friends can't see your posts).  I have found it invaluable for advice and support so look it up when you have a minute.   Whereabouts is your tumour? X

Hi Charlotte,

So glad Andy got  in touch and revived your thread!

Great that you've been able to offer him some support and point him in the direction of a FB group (I know how supportive these closed groups can be.)

I'm really sorry I didn't stay in touch and kee ,up with your progress, but it seems we were both having our surgeries at pretty much the same time!

It's good to read that your surgery went to plan and that you're back to work. Hope you're still taking it steady though

I know the forum is temporarily, shutting down for  a few days, but hope you have a good weekend and maybe catch up with you soon?

Take care, Jo xx

dear debbi, 

Firstly sorry for posting so many years later but I’m hoping that I can get some answeres somewhere. I’m sorry to learn of your findings and I hope that you have made a recovery over these past years. I am a young mum with a 4year old diagnosed with a meningioma. I am very scared about the outcome considering my daughters age( I am only 34). My symptoms relate to yours I too have found a lump on my left side of neck doctors are so relaxed and putting it down to swollen glands but I’m not convinced and don’t or won’t chance it, can you kindly tell me what kind of tests where done to determine your cancer on tonsils ? Im sorry if my post has bought back any sad memories I just am so desperate and scared for my daughters sake 

Many thanks 

Hi Yorkshirepud, I know you posted this a few years ago, but your story caught my eye. I went to A&E two and a half weeks ago with numbness in my head and face one side, my Dr suspected a stroke or TIA. A CT scan showed a meningioma. I have an MRI in 2 days and like you have only told a few people. This way I can carry on as normal, but it hits me occasionally. I feel numb and haven't cried. I've told my child's primary school teacher but not said anything to my child yet. I hope your operation was a success and all is good with you now? Xx

Hi, yes my operation was successful, unfortunately I have two more small Ms too but had gamma knife in 2017 and a recent scan showed everything is stable.  I have no symptoms and lead an ordinary life!  

It's a very scary time and I can remember just how I felt upon diagnosis.  Just tell people as and when you feel you need to.  You will know more after the MRI.  If you are on Facebook there is a brilliant group on there called Meningioma UK.  Everyone is really friendly and you can ask anything you want, it is a private group x x 

Hey. 

So I am super late to the post but I just wondered how everyone was after your surgery. 

I have a meningioma and my surgeon has only ever operated on this area once before. I am worried about things like losing my speech or eye sight or a number of things that might stop me getting back to work and having a quality of life. 

Can I ask how long was your rehab and did you have any problems?

I'm waiting for another 6 months as I was hesitant at surgery but now all I think about is that it's growing inside me and what if it then is too big to operate.

Thanks xx