I have a minimum eleven meningiomas is this normal?

Posted by welshdragon54 @welshdragon54, Jun 12 8:59am

Just attended my 'Urgent referral' after waiting for15 monthsand although I was told there was an incidentlal find of two meningiomas during an MRI scan for a mass behind my right eye which had caused me double vision, it turns out a CT scan I had in April 2023 actually showed at least eleven meningiomas. The mass was removed August 2023 by an ENT Consultant Surgeon and was a benign mucocele luckily. So, there was a meeting held prior to my ENT consult with the Neurosurgeon in attendance, but it's taken until June 2024 for me to see him and be told that even last year he knew I had multiple meningiomas. I am shocked as I assumed my 15 month wait meant the '2' meningiomas musnt have been important. He said we need a more up-to-date MRI and my next appointment is in November,5months from now! I'm in the UK is this the 'norm' of lack of interest? Should I be alarmed? I'm actually rather angry ENT dept was superb&neuro in no rush!!

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dlc1953 | @dlc1953 | Jul 14 1:41pm

In reply to @elisabeth007 "did you have adverse effects from the gamma surgery?" + (show)

Hi. I had Gamma Knife this past March. The only thing that I didn’t like (which I was knocked out for) they installed a metal halo to my head. I had 2 screws in the front of my skull and 2 in the back of my skull. They use the halo to lock your head in place so it doesn’t move during the procedure. I was semi conscious during the procedure, no pain or anything. Taking out the screws was easy. I had to keep my pin holes clean until they healed. I have scar tissue where the pin holes were. No complications. I get my 6 month check up in September. It’s amazing I was there for 6 hours, then went home. Here’s hoping my next MRI reveals only good progress. 🤞🏻

elisabeth007 | @elisabeth007 | Jul 14 6:56pm

In reply to @welshdragon54 "Wow,that’s a huge cost! Although we have the NHS here and we are fortunate not to..." + (show)

fortunately my share of the payment was zero and the hospital was required to accept as total payment their contracted rate with my insurance company—almost a 50 percent reduction

welshdragon54 | @welshdragon54 | Jul 15 2:39pm

In reply to @dlc1953 "Hi. I had Gamma Knife this past March. The only thing that I didn’t like (which..." + (show)

I wish you a speedy recovery after your procedure.
It sounds scary having a halo screwed into your skull for gamma knife surgery but it’s really Informative that you’ve explained the procedure.
All this is new to me so reading everybody’s experiences, advice and replies is priceless., thank you.

rwiltgen | @rwiltgen | Jul 18 4:05pm

In reply to @elisabeth007 "did you have adverse effects from the gamma surgery?" + (show)

Not that I am aware of. I work 50+ hours a week on my businesses, volunteer for a NFP on their executive board, and stay active with my Wife, family and friends.... Thank you for asking, I am very fortunate.

elisabeth007 | @elisabeth007 | Jul 19 9:35am

In reply to @welshdragon54 "I wish you a speedy recovery after your procedure. It sounds scary having a halo screwed..." + (show)

there is another option with gamma knife to have a mask rather than a “head frame”

welshdragon54 | @welshdragon54 | Aug 27 7:23am

In reply to @catv7 "You need to ask more questions. I feel like there is no normal everyone’s experience is..." + (show)

Hello,
I had thought I’d sent you a private message but seems not?
I’d appreciate your input in what I need to ask at my forthcoming appointment regarding getting the results of my 2nd MRI.
You offered to help me make a list of questions, I would very much appreciate that thank you.
I am taking my sister with me to the consultation just so I don’t forget anything I’m told or forget to ask anything important.

dlc1953 | @dlc1953 | Aug 28 12:54pm

In reply to @elisabeth007 "there is another option with gamma knife to have a mask rather than a “head frame”" + (show)

I had heard of that. From what I know my BIL had various Gamma Knife procedures. They used the halo for the first one, then the rest they used the mask.

catv7 | @catv7 | Sep 4 4:37am

In reply to @welshdragon54 "Hello, I had thought I’d sent you a private message but seems not? I’d appreciate your..." + (show)

Hi there…so sorry I have had a family emergency I have been dealing with and forgot to respond. You can send me a private message so I can communicate easier with you. Happy to help and so sorry for the delay. My daughter has been in hospital 2 weeks today and no sign of getting out soon.