After surgery

[Maybaby61]

It has been a rocky year.My AN was 5cm+ so my only choice was operation. It should have happened last December but it was postponed because I tested positive for covid. January this year(23) my symptoms worsened and MRI showed fluid on the brain so had a shunt fitted in February. The scan showed an Aneurysm close to the tumour so had to have operation to put coils in before AN could be removed. Finally had AN operation early may, had speech problems and couldn't walk I was transferred from King's to Orpington for physio where my speech returned to normal and I was walking with a stick.

A few weeks later I collapsed and ended up back in Kings, the shunt had drained more fluid than needed as tumour was no longer causing build up of fluid causing my brain to be concave so emergency operation was carried out. I was allowed home 3 days later that was July. In September I was allowed back to work on very reduced hours. I am totally deaf in left ear, waiting for new heating aids ( NHS). I am now able to walk 5000 steps + a day unaided. And now have the confidence to catch busses etc. It has been a tough year but I have come through it. Just want people in the same position to be positive life can get back to almost normal. I still have a little way to go but getting there. My balance is still improving and the fatigue is getting slightly less.

[NoFurtherAction]

Crikey, you’ve had a rough time for sure but I’m glad to hear you’re getting better. You must be relieved. Did they manage to remove most of the tumour?

[Maybaby61 in reply to NoFurtherAction]

They had to leave a bit because of facial nerve damage but will do regular scans to check it's not growing again

[FERNBROOK]

What you've been through sounds really tough. Glad you seem to be well on the recovery road..I don't think many will routinely go through the same trauma but I agree with the sentiment that there is real hope for everyone who is finding their situation pretty unbearable. After retrosigmoid surgery with complications invoving life support and a 4 month hospital stay myself I know how desperate the whole thing can seem. These complications we experience are thankfully rare and by no means the norm..to put the whole thing into context. That's not to say those undergoing straightforward surgery are no less traumatised by their experience and those feelings are real. The recovery road can be long and tedious but it's there and people should know there is a good life still to be had. I never thought it possible but it is.

[Maybaby61 in reply to FERNBROOK]

Glad things are good for you. I know my story isn't the norm but thought people would see there was a light at the end of the tunnel, even though it doesn't feel like it when going through it

[Pinkrose1]

You have been through such a lot. I thought mine was bad as i was in bed for over 2 months after the surgery but you have gone through much worse with the anureysm and build up of fluid. I'm so glad to hear how well you have recovered, that is a real achievement to be back at work and keeping active with walking and its inspiring to read your experience. X

[Maybaby61 in reply to Pinkrose1]

Thank you x

[SunFairy]

My goodness you really have had a tough time. It is very good to hear you are doing so well, such an inspiration. I had my AN removed 8 weeks ago. It had become cystic and was pressing on my brain stem and facial nerve. I also have a slitter of the tumour left which will be regularly monitored but my neurosurgeon is confident it should not grow again, although as we know there are no guarantees.

I'm very positive about my recovery. I was only in hospital for 10 days which I think is amazing when I hear other peoples experiences. I haven't been out as yet. I'm still a bit nervous but hopefully soon.

I am also 62, a 1961 baby from Kent, we are tough stuff, lol.

Thank you for sharing your experience. Good luck for the future.

Sunfairy 🌼

[Maybaby61 in reply to SunFairy]

Thank you and good luck to you. We are definitely tough stuff x

[whitefishbay]

Well done. Back to work. Many would give up. More power to you. I have NHS hearing aids and they help but take some time getting used to. I hope you don't have to wait too long. Mine have blue tooth so speaking on my mobile is great. Best of luck.

[Maybaby61 in reply to whitefishbay]

Thank you