Menginoma position

[WinniB]

HiHas anyone had the experience where their menginoma is in a difficult area of brain to reach or attached to brainstem?

[WinniB]

Apologies for the spelling , should read meningioma

[Emz8311]

Hello yes i have 1 meningioma that can not be removed due to location,

[WinniB in reply to Emz8311]

Can I ask, is there anything you have found effective in coping with symptons?

[Emz8311 in reply to WinniB]

I have 6 meningioma tumours there is only 1 that can't be removed, i dont really have any symptoms at the moment, the 1 that was causing problems I had removed,

[Hidden]

Just joined the group WinniB and saw your post . . .

I have had a Meningioma for 5 years that cant be removed due to its location

[softwarefreak]

Hey, like the previous poster I just joined and found this thread.

Mine is Falcine, thus located in the Falx which is between the left and right hemispheres.

This is operable but, after international research, the surgical outcomes are 'poor'.

[Trvlr in reply to softwarefreak]

Same. 😞

[Bordermum]

I have. I have a petroclival Meningioma pushing against my brain stem. Awaiting surgery.

[WinniB in reply to Bordermum]

I had my surgery in May. Was home within 3 weeks to continue recovery. I hope all goes well with your operation. X

[Bordermum]

Thank you. They said only 1 week in hospital!! Going deaf in left ear already. It’s described as a giant tumour!! Very worried about the outcome. Thanks for replying.

[WinniB in reply to Bordermum]

Yea mine was a biggy! Had to leave some in.I'm deaf in my left ear too. X

[Bordermum]

They are going in through my ear to get better access . So I will be totally deaf in my left ear. And they won’t get it all out either. Possible gamma knife afterwards . I’m just worried about having palsy of weakness. So much can go wrong!!

[WinniB in reply to Bordermum]

They went in behind my ear. I'm in the process of possible radiotherapy. You are so much can go wrong but it's only because they are obligated to tell you .

I had very severe symptoms as I was pregnant and my hormones were feeding it. My op was 12 hours. I have left side palsy to my face but i knew it was highly likely due to my personal situation. But I'm home, independent and raising a 5 month old and coping. You must be positive , you absolutely got this!

[Bordermum]

Wow you must be so young. My kids are 29 and 26 . But my 26yr old has profound mental learning difficulties and epilepsy. And lives with us at home still. You sound so brave and coping with such a lot. A babe is such hard work. They said my op would be of a similar length too. Will they try surgery to help your palsy?

[WinniB in reply to Bordermum]

Im 39. I don't think so. They cut 3 nerves to my face so they could remove enough of the tumour. So it's a time thing to see if it repairs itself. It certainly is tiring but she keeps me going!

Please let me know wen u go for your op. Will be thinking of you x

[Bordermum]

Thank you I will. I’m 60 now so 39 is very young. Good luck on your recovery. I don’t feel my age. And i hope this doesn’t bring me down too much. Best wishes.x