Meningioma Recovery

[DeeMay16]

27 days into my recovery from meningioma surgery. Starting week 5 with so many questions, I hear a dripping noise recently. Is that normal? Also, as the numbing decreases the weight of the surgery seems to become heavier. My face (right upper side) literally feels heavy. Trying to be positive and patient with this journey. Any tips or advice are highly appreciated!

[Cast_away]

hi there

Sending you good wishes for a speedy recovery!

Following my surgery in September 2022 I too experienced a dripping sound in my head - I was told it was the movement of fluid which was being absorbed into my system. This stopped after several weeks.

The numbness is still a problem for me although it has improved slightly. I also find that my scalp itches and I can get no relief from scratching as I can’t feel it - so strange to feel numbness and itchiness but can’t feel me scratching!

Like you say keep positive and patient - it’s a journey that’s helped by this approach.

[DeeMay16 in reply to Cast_away]

thank you for taking the time to reply! I wish you continued recovery, as well. I am a bit surprised that the numbness hasn’t completely subsided for you. It definitely is quite a journey. I try and work through my anxiety as I feel everything I experience like is directly related to my surgery. Best wishes and take care!

[Trufle]

Best wishes with your recovery! I am a little over a year down the road and the left hand side bottom quarter of my face is still numb, best way to describe is like I have a permanent filling injection wearing off! Sometimes creeps up to under my eye and the whole ear is numb from the surgery, the scar itches and I to, gain to relief from scratching! Stay positive, you are still here ! It will be better - just how long is a piece of string ….

[DeeMay16 in reply to Trufle]

thank you so much! I would love to be a year out of this journey. It takes such a strong mind to get through this recovery. I have to tell myself not to be so paranoid that a complication can still occur. Sorry to hear about your numbness, hopefully that subsides 🤞🏼. Appreciate your reply, take care.

[Shade1 in reply to DeeMay16]

I agree with you, the recovery is quite a journey every day is a different phase, I’m still itchy on my scalp and sometimes still can’t feel the sensation because of the numbness and mine’s isn’t done yet because I still have a reconstruction programmed for October because my frontal bone was removed because of the infection I had after a month of surgery 🥲but I believe God almighty who’s faithful to me and my children will never forsake me 🙏🏽❤️

[Trufle]

It takes time, I took six months off work and then phased return! I have my year MRI in July and opthamologist later this month! They have found a second meningioma but it is not pushing on the brain like the first one so fingers crossed it hasn’t grown and won’t need surgery! The thing I struggle most is the memories that I think happened but didn’t, which is delirium through the drugs, which they didn’t tell me about and I’m having counselling for that 🤷‍♀️ I had a tattoo done, that says “long story short I survived” and that keeps be positive 😁

[DeeMay16]

I love that! Long story short I survived, funny I was actually thinking of a tattoo as well. Definitely sending you healing vibes hopefully all turns out well with your yearly check in!

[Shade1]

good evening from France 🇫🇷, I might be a bit late to reply ur message but I’m equally a big survivor of this terrible tenant which leaved rent free on my frontal lobe of which was 7 cm large 🥲due to the consumption of LUTÉNYL for over 10 years and I can tell you that lam so grateful to God for saving my life because I was operated 3 times already from the 1st time 20th December 2022 but unfortunately had an infection from the 15th of January and got operated again on the 29th & the 6th of February because my frontal bone was infected and got removed by my surgeon 🥲 I had those squeezing movements in my head the first time but not the second nd 3 rd time, I’m going to be operated again for a reconstruction of my scull with a prothèse (fake bone) to cover my brain that’s visible while breathing 😭but I believe in the God of creation who has saved me 3 times already that he’ll keep me safe and protected again and give me the opportunity to continue to raise my wonderful children , the Lord is good and faithful 🙏🏽 I wish you a quick and peaceful recovery ❤️🫶🏽

[DeeMay16 in reply to Shade1]

sending you love and prayers 🙏🙌🏼.

[Gigiwith7]

I had my tumor removed 2 years ago. I feel great now. I heard dripping and creaking sounds for a few weeks after the surgery. I was told by my nuerosurgeon it was common but the nuerologist said it was an auditory siezure. I know that was not true because I have heard many people say they also experienced it. Stay positive after a while its like it never happened.

[deepblues]

Hi. I had a large olfactory groove meningioma removed 18 weeks ago following 8 years of watch and wait . My scar is ear to ear across the top and the scalp behind that is still numb and itches like crazy still. I am hoping it will fade but it has not so far. I am still utterly exhausted and have no sense of smell or taste due to removal of those nerves to get the large tumour out. But I do have a vile and noxious taste and smell that I am told is phantom ( I asked questions about this in a post above a few days ago). No one in the NHS is yet advising or supporting. My personal experince is that the after care is scarce. I feel lucky to be alive and can see (tumour wrapped around optic nerves) but cut loose from the NHS to cope.

I hope that your symptoms get better with time. Sending best wishes for your recovery, it seems from others that it is a slow and long one. x