8 weeks post op

[Booliejell]

Hello . I am recovering from AN surgery which took place 8 weeks today . A 10 hour op . The facial palsy is improving but still very numb and my left eye aches . As expected I have neck stiffness and suffer from episodes of daily nasty gnawing brain pain . I fatigue very easily and balance is quite wobbly especially in public spaces! The tumour was 4cm with significant decompression of the brain stem . Amazingly my only presenting complaint was intermittent hearing loss . Feeling quite frail but it is still early days . All I can say is what a life changing journey this is .....I worked full time as a nurse and ran x3 per week . Hoping I will return to ' my normal ' one day . I have no idea when I will be well enough to run again but I hope I can eventually . X

[Kristyll]

sounds like you are doing great. Hard for s nurses to be ill but in time you will improve gradually. take your time x

[anan88]

Dear Booliejell, don't want to sound is if I'm trivialising, but something really important just now is how gorgeous your puppy is - what a sweetie, and exactly how much cuddling does s/he get while you're at home a lot?! My dog was miffed when I started going out and about more after my AN (being so worried he couldn't take such good care of me when I was out. Just joking - he just cared about having company and being cuddled and given treats all the time).

With surgery behind you, you can start looking forward again, however "compromised" you feel now until things start righting themselves in your head. Being a nurse, you know the decompression in the brain stem will improve tremendously fairly quickly (my 3 cm AN was also curving it into a question mark) and I feel that things getting back into alignment made me feel a lot better fairly soon. Balance takes a while, and public spaces feel now as if they're very strange indeed, (stay out of big Tescos and loud restaurants), but it all does get a whole lot better. Having a dog is great for making sure you get out and walk, and as a runner you were really fit before the op. and will get back into good shape and have less fatigue again much sooner than those of us who were more sedentary, and just cuddled dogs for exercise..... I started meditating, which helped massively, and still does when I bother. Just remember, it all gets better.

[Booliejell in reply to anan88]

Thank you so much for your lovely response . Bobby my westie is a big boy now but I love the picture! He gives us lots of laughter with his naughty antics . My main problem is excruciating brain pain, with piercing gnawing sharp like spasms penetrating into the brain and across the scalp . It's make me cry out but does eventually settle . GP started me on pregabalin yesterday. Just had another attack as I got up from my bed . I was told that my brain is still inflamed and swollen from the recent craniotomy and nerves are trying to sort themselves out . Omg .....it is such hard work ....but I am so pleased to have found this site and link in with people who have experienced the same surgical journey . Julie x

[anan88 in reply to Booliejell]

Yep, we're all right there behind you Julie. Be kind to yourself. I imagined stroking my brain with pink powderpuffs and blowing it kisses. Sounds silly, but visualisation can be a very strong aid when your brain's jangling. It's been subjected to such indignities! When your anxiety and pain feel more under control, your whole body and brain will start relaxing. And 6 years after all my AN surgeries etc., my nerves are still improving.... It's wonderful what your body can do.

[Booliejell]

Thanks so much for your reply . Yep ... I am struggling as a nurse .... I cannot gauge my patience and think I should be sooooo much better 8 weeks post op . The will is there to do things but physically still delicate with pain balance and visual struggles . I have to keep reminding myself that the brain is still swollen and inflamed after major surgery . I'm getting there but seem to have plateaued in the recovery phase . Julie x

[smithy1313]

Hi Julie, I had my op in 2009 when I was 40 & I remember my consultant saying you'll be wiped out for a month & it will be a good 6 months to get back to normal. I thought that was ridiculous as I was very fit & healthy .... but he was right. I'm a senior HCA and yes we dont do 'ill' very well. But dont rush your recovery. I used to go to bed for a rest early afternoon & be really pleased if I'd managed one thing a day like a trip to the supermarket !! Let people help & delegate housework. You'll get there even though it will be slowly. Linda xx

[Kristyll]

you are doing great were all here to tell the tale and to help and encourage. Good luck x

[BuzzyGary]

Mine was a similar size when removed at the start of this year. I had been told 12 week recovery and I thought pffsh! it wouldn't take that long... but it does, and the rest! For me it was slow but steady.

I had been fairly fit (not a runner like you, but a mid-distance walker) and the year up to diagnosis destroyed my fitness. Within 3 months of surgery I was back up to walking 4 miles a day and regularly 8-12 miles, albeit slow and steady.

Keep active and you'll get back on top, I'm sure. It was absolutely necessary for me in order to keep on top of my balance problems, but being a walker I didn't have much there to complain about. Walk around the park? If I must!

[drdeanbellavia]

I also had Brain Pain after my Gamma-knife surgery in 2001, the pain was mostly in the back of my head (cerebellum). I created specific brain exercises to get my overworked cerebellum back to normal (or as close to normal as possible) by working each of the three semicircular canals separately. Refer to the following link to learn the "Brain Exercises" that could help you to regain your balance and ease your pain:

thebioengineeringco.com/ind...

Also refer to my post "How I used Brain Exercises to Regain my Balance".