AN regrowth

[Jools5678]

Hi. I have had surgeries in 1983, 1990 and 1991. They was a small section left in due to it being on the brain stem. As anybody had a regrowth after so many years? I am waiting for results of an MRI scan as I have been experiencing symptoms I had just before my surgeries.

[anan88]

Hello - my symptoms (physical and cognitive) get worse or re-appear when I'm tired and/or stressed/anxious. I was worried that the tumour (originally bending my brain stem out of shape) was re-growing, but MRI in January showed it was stable and now tiny. Brain stem normal now (had surgery and Gamma knife). Nerves do weird things sometimes! Good luck with your results. As you know, worrying doesn't help, but it's totally understandable that we do!

[Freddy1000]

I too had surgeries in 1988 1995 and 2002 , still to date I have regular mri as I also had some tumour left near the brain stem as it was a huge one 15.5cm , I was left with hearing loss and facial palsy , the usual symptoms I’m still dealing with is severe fatigue , pain everywhere and (bad heads and dizziness ) just like before I was diagnosed, but the tumour is still stable on my last mri showing last year it’s about 1.5 cm atm and not shown no movement for years now , unconnected I was recently referred to an endrinconology clinic as my cortisol levels were found to be very low and they thought I may have Addison’s disease because I fit all the symptoms of that which also fit with symptoms of AN , after tests for that it proved negative and didn’t have it , the prof what I saw said to me he thinks because my low levels of cortisol are not hormonal the symptoms I’m still getting are more likely as a result of the surgeries of th AN as it is in a very dangerous area and more investigations are needed , so I think a referral back to a neuro is forthcoming , I’m not sure if anything will come of this but I will post up the findings of it ,

Best of luck 👍