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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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welshdragon54 | @welshdragon54 | Jul 10 1:12pm
In reply to @catv7 "You need to ask more questions. I feel like there is no normal everyone’s experience is..." + (show)
@catv7

You need to ask more questions. I feel like there is no normal everyone’s experience is different as there are many variables from person to person. But did you get results after they found 11 tumors? What are their sizes, where are they located? Are they benign? Why are they making you wait 5 months? Is it because the office is busy? Can you get a second opinion? Are you having symptoms that are impacting your quality of life? Get a report on your last MRI & call the doctors office to get some answers. And above all be your own advocate trust your instincts that you have by posting this. Good luck & keep us updated so we can support you & pray for you. If you want to reach out to me personally I will be a listening ear and can help you make a list of questions. ♥️🙏

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Thank you very much for your reply.
Just had another MRI today, not sure how long it will be until I get the results but I’ll let you know the outcome so 🙏☝️fora good outcoe

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1 reply
welshdragon54 | @welshdragon54 | Jul 10 1:40pm
In reply to @elisabeth007 "what i find abnormal is that you are seeing an ENT rather than a neurosurgeon" + (show)
@elisabeth007

what i find abnormal is that you are seeing an ENT rather than a neurosurgeon

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I had a mass behind my eye, it turned out to be a benign mucocele
In my ethmoidial sinus, which is why I needed to see the ENT consultant. That got sorted last August, and no biopsy was required.
As metioned it has taken until June of this year to be seen by my Neurosurgeon ,, and he did arrange a prompt new MRI. I’m not sure why I’ve been given a further appointment in November, hopefully I’ll get my results of today’s tests a lot quicker.
I appreciate your reply and it’s reassuring to have someone who is knowledgeable about what questions I should ask,thank you

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catv7 | @catv7 | Jul 10 2:37pm
In reply to @welshdragon54 "Thank you very much for your reply. Just had another MRI today, not sure how long..." + (show)
@welshdragon54

Thank you very much for your reply.
Just had another MRI today, not sure how long it will be until I get the results but I’ll let you know the outcome so 🙏☝️fora good outcoe

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Praying please let me know what you find out

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1 reply
welshdragon54 | @welshdragon54 | Jul 11 3:15am
In reply to @catv7 "Praying please let me know what you find out" + (show)
@catv7

Praying please let me know what you find out

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Thank you, I’m hopeful all will be well although I know having so many meningiomas doesn’t bode well.
I have to go for genetic screening so my one wish is I haven’t got anything I could’ve passed on to my two sons or grandchildren.
Other than that, you have to keep the faith, and means so much having people to talk with who are far more knowledgeable than me.
This is an invaluable forum 💞

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rwiltgen | @rwiltgen | Jul 12 8:09am

Hi I had symptoms in 2018, being cross-eyed in my left eye, that lead to an immediate MRI.
A small, but odd mass lite up near my left #6 eye nerve and brainstem. The first group of doctors wanted to do an immediate resection, within 1 week, and have it biopsied. I decided to get a second opinion. Both groups said that it was most likely a meningioma. I was told that meningiomas are very common, slow growing and often are never diagnosed. I asked why a full MRI is not given to all people every 10 years starting at 20 so that we can catch these abnormality's early. They proceeded to tell me of a story where a neuro medical student who decided to have an MRI done on his head, he had no symptoms, and found a sizable mass on his brain. At this point the alarms go off, the anxiety builds and his life changes. There is a good chance that the growth would have never developed symptoms in his normal life time. The moral of the story is that none of us are normal, and many of us never know it. My advice is trust your doctors and if you do not find another one. BTW, the end of my story is a very good one. I had the mass partially resected in November of 2020, the biopsy confirmed it was a meningioma, in February of 2021 I had gamma knife Laser surgery, and in November of 2021 they straightened out my eye, my left eye was crossed almost 30 degrees. Absolutely amazing and I am forever grateful.

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2 replies
welshdragon54 | @welshdragon54 | Jul 12 1:08pm

I am so glad you have had a good outcome.
Stay well and healthy x

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elisabeth007 | @elisabeth007 | Jul 13 9:42am
In reply to @rwiltgen "Hi I had symptoms in 2018, being cross-eyed in my left eye, that lead to an..." + (show)
@rwiltgen

Hi I had symptoms in 2018, being cross-eyed in my left eye, that lead to an immediate MRI.
A small, but odd mass lite up near my left #6 eye nerve and brainstem. The first group of doctors wanted to do an immediate resection, within 1 week, and have it biopsied. I decided to get a second opinion. Both groups said that it was most likely a meningioma. I was told that meningiomas are very common, slow growing and often are never diagnosed. I asked why a full MRI is not given to all people every 10 years starting at 20 so that we can catch these abnormality's early. They proceeded to tell me of a story where a neuro medical student who decided to have an MRI done on his head, he had no symptoms, and found a sizable mass on his brain. At this point the alarms go off, the anxiety builds and his life changes. There is a good chance that the growth would have never developed symptoms in his normal life time. The moral of the story is that none of us are normal, and many of us never know it. My advice is trust your doctors and if you do not find another one. BTW, the end of my story is a very good one. I had the mass partially resected in November of 2020, the biopsy confirmed it was a meningioma, in February of 2021 I had gamma knife Laser surgery, and in November of 2021 they straightened out my eye, my left eye was crossed almost 30 degrees. Absolutely amazing and I am forever grateful.

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as a former Medicare fraud investigator, i can tell you the “economics/policies” of health care and healthcare policies don’t make it feasible to have an MRI unless “it’s medically necessary”. i just looked at the billed price of my May 2024 brain/orbital MRI done
in an academic hospital setting—almost $17,000

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1 reply
elisabeth007 | @elisabeth007 | Jul 13 9:43am
In reply to @rwiltgen "Hi I had symptoms in 2018, being cross-eyed in my left eye, that lead to an..." + (show)
@rwiltgen

Hi I had symptoms in 2018, being cross-eyed in my left eye, that lead to an immediate MRI.
A small, but odd mass lite up near my left #6 eye nerve and brainstem. The first group of doctors wanted to do an immediate resection, within 1 week, and have it biopsied. I decided to get a second opinion. Both groups said that it was most likely a meningioma. I was told that meningiomas are very common, slow growing and often are never diagnosed. I asked why a full MRI is not given to all people every 10 years starting at 20 so that we can catch these abnormality's early. They proceeded to tell me of a story where a neuro medical student who decided to have an MRI done on his head, he had no symptoms, and found a sizable mass on his brain. At this point the alarms go off, the anxiety builds and his life changes. There is a good chance that the growth would have never developed symptoms in his normal life time. The moral of the story is that none of us are normal, and many of us never know it. My advice is trust your doctors and if you do not find another one. BTW, the end of my story is a very good one. I had the mass partially resected in November of 2020, the biopsy confirmed it was a meningioma, in February of 2021 I had gamma knife Laser surgery, and in November of 2021 they straightened out my eye, my left eye was crossed almost 30 degrees. Absolutely amazing and I am forever grateful.

Jump to this post

did you have adverse effects from
the gamma surgery?

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2 replies
welshdragon54 | @welshdragon54 | Jul 13 4:14pm
In reply to @elisabeth007 "as a former Medicare fraud investigator, i can tell you the “economics/policies” of health care and..." + (show)
@elisabeth007

as a former Medicare fraud investigator, i can tell you the “economics/policies” of health care and healthcare policies don’t make it feasible to have an MRI unless “it’s medically necessary”. i just looked at the billed price of my May 2024 brain/orbital MRI done
in an academic hospital setting—almost $17,000

Jump to this post

Wow,that’s a huge cost!
Although we have the NHS here and we are fortunate not to have
to pay, it’s still a very good point that I wouldn’t have been sent for another MRI unless medically necessary.
Because of your forum, I’ve now found similar brain tumour support
sites here in the UK. I don’t know yet how helpful they will be but I no
longer feel alone and thanks to your members replies you’ve helped me to ask important questions, be my own advocate, maybe get second opinions and also take a family member with me at my next appointment. Also,not to accept waiting for months on end before I get seen. Your site is invaluable, thank you all, and I pray for everyone on here 🙏

REPLY
2 replies
elisabeth007 | @elisabeth007 | Jul 13 4:57pm
In reply to @welshdragon54 "Wow,that’s a huge cost! Although we have the NHS here and we are fortunate not to..." + (show)
@welshdragon54

Wow,that’s a huge cost!
Although we have the NHS here and we are fortunate not to have
to pay, it’s still a very good point that I wouldn’t have been sent for another MRI unless medically necessary.
Because of your forum, I’ve now found similar brain tumour support
sites here in the UK. I don’t know yet how helpful they will be but I no
longer feel alone and thanks to your members replies you’ve helped me to ask important questions, be my own advocate, maybe get second opinions and also take a family member with me at my next appointment. Also,not to accept waiting for months on end before I get seen. Your site is invaluable, thank you all, and I pray for everyone on here 🙏

Jump to this post

i am grateful to have very good insurance which covered all costs of the MRI. i was trying to point out the cost of a patient has a “medically unnecessary” MRI in an academic hospital.

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