Hi I have just been diagnosed with a menengioma I am having surgery on 9th November, its all very scary 😳
Newly diagnosed: Hi I have just been... - Meningioma Support
Newly diagnosed
Written by
Satishouse
To view profiles and participate in discussions please or .
Read more about...
54 Replies
•
Hi, I also was diagnosed with a meningioma in August and am having surgery on 31st Oct. I am not sure how I’ll go through with it! It’s a big decision deciding to go with surgery over surveillance 🫣
I didn't have an option only surgery as tumour 4cm. I am trying to be positive but it's so difficult 😪
Good luck with your surgery
Thank you 😊 I will let you know how it all goes. I just want it over so I can move forward without thinking about it! I hope your surgery goes well too.
Good look👍
Good luck!
Morning. Good luck for tomorrow 👍
Stay hydrated today yeah,not as big headache tomorrow!
Hiya, it is scary. I was diagnosed over 6 months ago and still awaiting surgery. Just want it done and dusted now. The waiting is just too much. It’s tus size of a satsuma and already going deaf in one ear. I wish yoh luck for your surgery.
Rosie x
Oh my goodness that's such a long wait for you. I'm sorry you're having to go through that.
I’ve got mine on the 29th of November now. Let me know how you’re doing. Ll be thinking of you .x
That's great news I'm so pleased you now have a date, onwards and upwards. xx
Hi, I’m also hoping to have my surgery on the ninth as long as the pre op goes ok. I’ve been on the waiting list for over a year for my op. Talking to others it appears it depends on a lot of things but also where you live in the country as to how long you have to wait. It’s a scary time and maybe we’ve had longer to prepare but I don’t know that anything can prepare you for what we are all about to go through. Perhaps we can support each other instead.
It’s awful waiting . I’ve been waiting so long too. Just been told my op will be on the 29 of November. That’ll be almost 8 months. Good luck.
Good morning and good luck for tomorrow 👍 Stay hydrated 2day....not as big a headache tomorrow!
Good luck!
Good Luck with your surgery. Be positive everything will be alright.👍 I had my meningioma grade II surgery in May 2020 for a tumor of 6 cm. Gone through Radiotherapy also. I am well now even after many complications during the surgery. I joined the work again in 2021 and completed my Ph.D. also during cancer leave. Have trust in your neurosurgeons.
I wanted to share my positive experience after having a craniotomy today and a 1.6cm meningioma removed from the front right side. It all went well. I’m currently in ICU recovering and had no post opp complications or nerve damage. I have all my hair except a small shaved scar section and my family visited and said it’s a 6 cm line which my hair covers (I haven’t seen it yet!).
The hardest part was just before going into theatre where it got real. I was understandably nervous and had a teary moment before the pre anaesthetic going in, then recomposed myself, but appreciated the speedy process going in to theatre and supportive nurses and doctors who are amazing at what they do by reassuring patients. I’m not in a lot of pain due to well managed pain relief. I’m currently watching TV, have had cups of tea and a meal, so happy days! I hope my experience gives you hope and positive vibes moving forward with your opp 😊
That's brilliant news I'm so glad you are OK and recovering well. 😊
Brilliant! Well done you!
Just amazing. So glad for you.
That’s amazing news about Frenchie blue, I’m glad to hear all went so well on Monday.
It’s our turn next week and I will admit the closer it gets the more real it’s getting I’ve had a very long time to prepare myself but now the date is set it’s suddenly getting very real. But hearing about Frenchie blue has definitely helped so thank you. ☺️
All the best for your surgery next week.
Thank you 🤗
Good luck.
Thank you. I’m currently out of surgery. I was in recovery for a very long time as the operation was more complicated than expected. I currently can’t open my right eye which apparently is a side effect and my vision is very poor and I have a loss of sensation in my limbs so I think I could be here longer than planned. On the good news it looks as though they got the tumour out. 👍🤞🏼 Hope everyone else surgeries went well. 🤞🏼 xx
Glad to hear it all went well with ya surgery and you're in recovery. 👏👏
I can only imagine, it certainly is a scary proposition. It sounds like a lot of people on here have gone through the surgery with good results. I’m wishing you the very same.
good luck with your surgery this week. My surgery was in May 2021 for about a 4.5-5 cm meningioma. My neurosurgeon let me walk into the theatre and get myself on the table which felt like I had some control. I thought it helped and I appreciated that small gesture. Best wishes
Thank you that sounds positive, I hope you are fully recovered now 😊
I had a meningioma removed in January and thankfully all went very well. No complication at all. My hair was shaved just inside the hairline, very narrow area, hardly noticed. The team were all brilliant - trust them. I was 69 when I had surgery. The waiting is the worst, but such a relief when it’s done.
Good luck
Thank you that sounds very positive, I'm so nervous not really had any symptoms. Hope I have the same results 🙏
Good luck for the 9th. Trust the team of doctors and nurses. I can’t believe how quick the recovery has been as my stitches came out yesterday and I’ve had no Panadol since last Friday. I’ll be thinking of everyone who is having their surgery this week and wishing you all the very best for surgery and recovery.
Good luck. I’ll be thinking of you. My turn on the 29th. I know how you’re feeling, be strong and let us know how it went.🤞👍
Hi I had my op on Thursday feeling.ok post op little groggy and sleepy but hope to be sent home from hospital tomorrow
That’s good news!!
Hi how did your surgery go sorry I’ve not contacted you before but my road to recovery has been a little longer and harder than expected and I only came out of hospital last week. I currently can’t see out of my right eye and have lost my mobility so am having physio and occupational support to get me back on my feet so I have a long road ahead of me. I hope your journey has been kinder and smoother xxx
Glad to hear it all went well.
wow glad to hear you are feeling ok if a little groggy. I’m in an amazing place who are looking after me well and I’m on the road to recovery. Feeling much better now the pressure bandage is off. I think I’m looking at next week before I go home but definitely in a good place.
Glad to hear that you are recovering well.
glad to hear you are recovering well. Take care
Hi I’ve only just seen your post. How did your surgery go? I hope you are resting lots and recovering well. I’m 23 months post op. Open to questions if you have any. 💕
Hi yes it went well thank you, I've even gone back to work a few days, how are you getting on now you are nearly 2 years post op?
Brilliant...Well done you!!Have a great Christmas !!👍
I’m okay. I won’t be returning to work. It’s too taxing, literally. I’m still really struggling with fatigue. If I go out to do something for a couple of hours it wipes me out the next day. I struggle with walking, balance and dexterity. It’s all improving though. Awesome you have gone back to work.
Wow that’s amazing I’m so pleased for you that you are back at work a few days.
My recovery has been a lot slower but then again I was in hospital for nearly a month rather than the few days I expected as it turned out to be more complex than expected. I’m having to have community physio to help with my walking and balance and have occupational health coming in to help with my eye sight as my eye and eyesight was damaged in the surgery and assist me with word mapping and word finding as I’m struggling with this too.
Has anyone else struggled with this after their surgery?
The strange thing I have along with the intense headaches are the feelings of like ants crawling about inside my head I’ve been told by my neurosurgeon it’s my nerves repairing themselves as the blood vessels by them were heavily cauterised during the surgery. I have found a migraine hat helps. But any other tips grateful received.
Wishing everyone a great Christmas, can’t believe I’m actually home for it. 😊🎄
Hi I had my craniotomy 3weeks ago and joined this chat to see how others are recovering. It sounds as though you have had a really tough time with your recovery . I was sent home 24 hours after surgery with 10 days worth of dressings that my husband had to change daily with hardly any advice and have had no follow up contact from surgeons so we just winging it on our own.
Went to doctors after 10 days to have my 20 staples removed and doctor had a look at my wound said it looked great and sent me straight to nurse to have staples removed.
I’m still sleeping sitting upright as I get very lightheaded if I lay down but mobility wise doing great doing everything for myself feeling very independent
Hi sorry for the delay I’ve had a rough month. How are you getting on with your recovery?
I still have problems now 8 months on with my eyesight, exhaustion, numbness to my right side, light headiness if I bend down and struggle to get comfortable sleeping with pain in my right ear but every time it gets me down I look back at how I was after the surgery, unable to move, or feed myself or walk and realise just how far I’ve come. But it’s a very long road to recovery which needs great strength one that the consultant definitely didn’t discuss in great length during the year I was waiting for my operation nor the other many years I was on watch and wait.
I’ve clearly been unlucky but would have liked to have been better informed. It is good to hear about others journeys.
Moby50• in reply to
Just incase anyone was confused the above post was me I was having problems with my profile.
Hi I'm sorry to hear your recovery has been tough and hopefully things will get better!I've recovered ok back at work its 7 months tomorrow since surgery, get a bit dizzy if do too much but keep pushing myself! And trying not to fall asleep halfway through a film haha!
Still waiting for my licence back which is arduous with dvla.
Not what you're looking for?
You may also like...
benign meningioma diagnosed October 23
Hi everyone,
I've been lurking and reading the very brave and positive stories here for a while...
Flying with a meningioma
Hi
I was hoping someone might be able to advise me on whether you think it is safe to fly with a...
DVLA - 6 months post meningioma surgery
Hello!
I am now six months post meningioma removal and have applied for the reinstatement of my...
frustrated
Morning, I was diagnosed with a meningioma behind my left eye on the 19th of September this year,...
just had a craniotomy
hello I joined this group to hear how others are recovering from their crainotomy.
I had my...
Meningioma advice
meningioma headaches 
Meningioma 
Meningioma diagnoses
Is it true that 3cm meningiomas don’t cause symptoms? 
