Brainstem Tumor

  • 3 replies
  • 19 subscribers
  • 1442 views

Hi

i am writing this to get views about brainstem Tumor.

My wife had numbness in her left hand and stiffness from shoulder to hand.

She has been diagnosed with Brain Stem Tumor according to MRI.

main surgeon suggested surgery in August 2020 which we avoided .

had consulted 2 other neurologists , and they advised not to go for surgery.

As per new MRI done in April 2021 size of Tumor is same as in August 2020 but numbness and stiffness is more often than before.

would like to have some suggestions if someone has experienced this. 

  • Hi, sorry to hear about your wife, I have been diagnosed with a brain stem tumour. It is different for me as I have no symptoms and I have been told surgery is not an option. I am currently having radiotherapy and chemotherapy which is hard, but I had surgery for a similar tumour 20 years ago that was lower on the brain stem and the side effects to the surgery took years to recover from.

    maybe ask about radiotherapy, the worst thing for me about that is hair loss.

    Another option since it hasn’t changed is to leave it and monitor symptoms and with mris, but it is deciding whether to do something whilst your wife is relatively well.  I was told if i waited too long on mine, it would be completely untreatable

  • Thanks Charlotte

     We are doing exactly that. Waiting and getting MRI s done every 3-6 months , but the problem is same as you have mentioned. If we wait too long it may be untreatable or something worst happens .

    We are always  living in fear.

    still consulting more specialists around the world.

  • Hi Jay

    when I had a tumour previously, there was someone else with a brain tumour and I remember his parents traveled the world looking for a treatment and consulting specialists. They found that as it happened right here in the UK (Birmingham) was actually one of the best in the world.

    I am lucky that I happen to be being treated there (if there is anything to feel lucky about).

    I don’t know who / where you have consulted but it could be a possibility to speak to someone from the QE Birmingham