Spinal Meningioma

[Rosamond35]

Waiting for a surgery date to remove a spinal meningioma. Anybody had this? Had some general info about what recovery could look like, but would like to hear from anyone with personal experience.

No horror stories please - only option is surgery!

Hi op I've had a meningioma, surgery in 2018. It wasn't a spinal one though. I'm a member of a Facebook group - Meningioma Support Group - the Brain Tumour Charity. There are some people on there with spinal tumours, who could give you more information. Good luck with the surgery.

Thank you, I will check it out. Can you join anonymously though? Obviously not something I want to advertise through Facebook.

I hope your surgery was successful.

I had a spinal meningioma and surgery in 2018. My symptoms were difficulty in walking, also difficulty in emptying my bladder fully. My walking was so bad, I was given a walking frame. The care I received in hospital was gold standard, thank God for the NHS. My meningioma was at the level of T1, I did have post op pain which was managed well by the pain team. I also had weird tingling sensations in my spinal area, which I think was my nervous system rebooting itself. With some physio input, I very quickly was able to walk normally. I went home a week after surgery, I walked out of the ward…ten days earlier I had to be wheeled to the ward.
Four weeks later, I was back at the gym.

That's amazing! You must have been so relieved.

I'm having trouble walking, but still getting round, it's just a huge effort to coordinate and left leg isn't lifting very well. Also having burning sensations, some numbness. Left foot feels so weird now, like muscles are almost permanently flexed, and toes keep going purple! Also have spasticity and muscle rigidity down left side so balance is pretty ropey. Mine is at T3, displacing and compressing spinal cord, which looked awful on scan. But told symptoms should improve, and can resolve fully, though no way of knowing how things will go obviously.

If you don't mind me asking, do you have any residual symptoms? And how long did you have symptoms before being diagnosed? Suspect mine has been causing problems a long time, though only this bad for the last few months.

I felt overwhelmed, especially at the wonderful care I and all the patients received. By coincidence, my husband works as a consultant in the same unit, he’s since retired. The only problem I had post op, was with fine motor movement in my right hand. I remember telling the Consultant Neuro Surgeon that would keep texting people on my mobile, I was high on the anaesthetic drugs at the time! The problem quickly resolved itself. Patient’s neurological function is constantly monitored during surgery.

Also, to answer your question my symptoms had started a few months earlier. I was reluctant to seek help, as I thought that I had MS. I’m an ex nurse. When I did go to my GP, he referred me to a neurologist, but I was warned that there was a long waiting list. I went as an emergency to my GP, when my leg weakness got worse. GP sent me to hospital, when after 3 MRI scans, my tumour was discovered.

Pleased it went well for you, gives me some hope.

And thanks for the info, appreciated.

Rosamund35 it's a private group, so although you're not anonymous the members can't be seen by non members

Thank you Mistymountain.

Serenely,if you're still around - did you have to lie flat after the operation? I've been told Ill have to for 1-2 days, but forgot to ask if that would be on my back and if I'd be able to move or eat at all!

Sorry, serene12 even (autocorrect...)

No, I didn’t have to lie flat. I returned to the ward at about 6pm, a nurse helped me to sit up to eat some M&S sandwiches and drink a cappuccino.
The next morning, a nurse helped me to have a shower and she washed my hair.
Different hospitals will have different advice.

Thank you...Will have to ask for further info at the pre op.

Still waiting for surgery date and now really worried as it seems it may not even be January. How long did you both have to wait for surgery? If it rolls on to February it will be 10 weeks - surely that can't be right??

I was referred to the neurosurgeon in October 2017, but didn't have surgery until June 2018. I was expecting to be rushed in, but they don't usually seem to treat meningiomas as an emergency. Mine turned out to be a grade 2 and was growing at the rate of about 2.5 cm a year. If you are suffering major symptoms and it's growing in a difficult area, then you will be treated as a higher priority.

Another problem is that after the operation you'll need to spend the night in intensive care, and the availability of intensive care beds is a major constraint. Don't be afraid to be pushy in phoning the neurosurgeons secretary or the hospital bed coordinator! Good luck

Wow, that's really quite a wait - must have driven you potty. Weirdly got a phone call back this morning after phoning yesterday and now have a date which is massive relief. Though I'm also surprised at the length of the wait, particularly as I was told it the longer it was left, the more chance there was of any damage being permanent.

Good news that you now have a date. It's such a relief when you realise you haven't fallen through the cracks in the system!

Yes, that was always my worry. Can begin the countdown now.i just hope the date is quick enough. Got to trust the surgeon's judgement I suppose.