Petrocival meningioma

[Bordermum]

Hi I’ve been diagnosed with a giant petroclival Meningioma and am awaiting surgery. I’m very worried about the outcome of the surgery and wanted to chat with someone whose had this surgery please

[Trufle]

Hi, I had craniotomy and resection of petroclival meningioma in May 22 of last year, I’m happy to chat about any thing 😊

[Bordermum in reply to Trufle]

Thanks for your message. I’m awaiting surgery in the next few months and am wondering what the effects of surgery will be. I’m obviously very scared . I know they can’t get it all out. It’s about 6 cm round. And they said I may have gamma knife radiation further along the line. But the side effects are many and pretty scary. I’m going deaf already in my left ear and they plan entry via the ear so I will end up deaf in the left ear. How was recovery for you? And how long did it take?

[Trufle in reply to Bordermum]

Hi, I am deaf in my right ear as a result and they went in behind the right ear as it was easier as the hearing was already gone. I have a cross aid hearing aid now. They couldn’t remove all mine as was on an artery but I am just waiting MRI results to check it regrowth but there was none after 6 months, although there is a second one but fingers crossed not causing any problems! 14 hour op, 3 weeks in hospital as I reacted to anestic and was delerious! Had six months off work and gradually got stronger! First few weeks was hard as I had muscle wastage from not doing anything and needed help walking any distance. Have numbness in right side of face but it looks normal and slight nerve damage in left (!) leg! Do you have surgery date as yet? 😊

[Bordermum in reply to Trufle]

They say poss October. Sounds like a marathon. I’m retired but having to juggle with disabled daughter with profound learning difficulties. Just so worried at how long I’ll be incapacitated. And about the long term side effects. It’s hard to take it all in when they talk to you. Hard to process. Are you driving again?

[Trufle]

Hi, yes am driving again on restricted 3 year license, couldn’t drive for six months until I got ok from surgeon! Where are you based? I am lucky ten minutes down road from Addenbrookes! Care was amazing, trust in your surgeon - this is actually more common that we realise and this is routine for them! Life does return to normal - whatever normal is! Do you have anyone that can be with you when you come out?

[Bordermum in reply to Trufle]

I’m under Queens in Romford. And I have my hubby at home. Thanks. That’s lucky you’re near Addenbrokes. They are the best. Do the cross aids work well?

[Trufle]

They are ok, don’t wear them day to day - only when in busy environment, find it difficult to put them in properly in deaf ear as can’t feel what doing- they are good though! Please message me anytime, privately if we’d be, to chat more and please let me know when get surgery date 🙂

[Bordermum in reply to Trufle]

Thank you very much.