Meningioma advice

[Calannmc]

Hi all,

I started getting constant headaches about three years ago. After being ignored by my doctors, I paid for a private neurologist, and he did an MRI, told me nothing was found and suggested it was menopause.

I've had three years of headaches, dizziness, vision issues and utter fatigue and losing the hearing in my right ear, being told its menopause, stress, i'm overweight, it's migraines and being prescribed various drugs, being put on HRT etc. I eventually (although at this point even i was wondering if i was making it all up for attention) saw a new doctor who sent me for another MRI.

There they found a 11mm mass. The neurologist told me he thought it was a falx ossification and made an appointment for me in September, but the radiologist suggested a contrast MRI, which was done at the end of March.

There, they found a 'well defined partly enhancing meningioma along the falx anteriorly'. On the phone call where he told me this the neurologist has stated that my headaches are unlikely to be because of this and suggested I go back on amitriptyline again. He will arrange another scan in 12 months.

Googling this brings either no or too much information, so I hoped those who have lived with this could explain to me if this is the right course of action. Amitryptiline worked for a short time for me, then stopped. I went up to 50mg a day and could hardly function because of the tiredness.

I am a software developer and the mother of four neurodivergent children, including a severely disabled son, so losing my eyesight or being too tired to function is devastating for me.

I have a partner, but his way of dealing with things is to ignore them, so I'm feeling quite alone, but I also don't want to be worrying unnecessarily if what the doctor says is correct and this is actually anything to worry about.

Thank you all for reading, and I hope all of your journeys with meningiomas end well, and you all have speedy recoveries.

[peaches2]

Hi there, if you join the same group on Facebook… meningioma brain tumour charity, you’ll find lots of people with experience to answer you. It’s a lovely friendly group. Xx

[Calannmc in reply to peaches2]

Thanks Peaches

[dunnellon]

You can also join Meningioma Mamas (and Papas) on Facebook. Lots of support and info.

[Sharkdiver3 in reply to dunnellon]

Thank you

[Calannmc in reply to dunnellon]

Thanks Dunnellon

[Sharkdiver3]

Don’t wait a year for it to get bigger- you have symptoms- better to do things now than when it’s larger and gets entwined with nerves that control balance, hearing, throat control- I was overlooked by doctors until I demanded an mri- I had it removed and it’s growing back. It would have been so much easier if we had acted earlier

time to perhaps have it removed. Rechecked at least

[Sharkdiver3 in reply to Sharkdiver3]

I currently suffer from many disabilities in throat area. My entire life changed overnight, lost hearing in one ear, can’t swallow food well, can’t talk well- and I’m a teacher. My palate is deformed, difficult to drink liquids, vocal cord paralyzed so they add gel and that helps but obstructs airway. And now radiation- I’m not feeling confident. Please check on any symptoms involving balance or senses.

[Calannmc in reply to Sharkdiver3]

I'm so sorry to hear that. Thank you for your advice. I have an appointment with my doctor tomorrow, i'm going to ask for a second opinion.

[Trvlr]

I am sorry to hear that you are going through this. Amitryptaline is the bottom-of-the-bucket headache treatment. (In my country, the insurance company go-to because it is cheaper than other treatments.) Ask for Ubelvy and see if it makes a difference.

[Trvlr]

Sorry, Ubrelvy.

[Calannmc in reply to Trvlr]

Thank you, I will ask for that instead

[PilotInLimbo]

Hi, I can see you are in the UK so I am not sure if the medical system is different to here in Australia, but all I can say is if you are uncertain then see another doctor and keep advocating for yourself. It took too many doctors visits, missed diagnosis and lost time trying to treat hearing loss (thought to be due to sinus issues) before I was accurately diagnosed. Best of luck and keep connecting with others in similar situations, it helps. X

[Calannmc in reply to PilotInLimbo]

Thank you.