brain stem tumours

FormerMember
FormerMember
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 does anyone else have a brain stem tumour affecting balance and coordination? i would love to make contact with other 'fallers'.

  • FormerMember
    FormerMember

    hi not sure what a brain stem tumur is but i have got an ependymoma tumor it can develope in the brain or the spinal cord mine has grown at the base of my spine in the central nervouse system my first signs was balance problems

  • FormerMember
    FormerMember

    My tumour was wrapped around my brain stem and it did/does affect my balance, although concentration is OK.  Let me know if you want to discuss further.

    David

  • FormerMember
    FormerMember in reply to FormerMember

    hi yes i would like to disscuss it further hope to hear from you soon

    pete

  • FormerMember
    FormerMember in reply to FormerMember

    Sorry for the delayed response.  I had/have similar balance issues, but I suspect less severe than yourself.  I lost most of my core body strength whilst in hospital, and had a severed cranial nerve which meant I lost the lateral movement control of my left eye.  It is permanantley to the right, giving me double vision.  These together have given me problems, each exacerbating the other.

    The double vision has in the main been overcome.  I wear specs and covering the affected eye lens with a film to block its visual input means I have single vision.  I am shortly to have an operation to fix the muscle into a central point, which will drag my eye into the centre.  This should more or less put me back to rights, although I will have to accept that I will always have two cones of double vision and my eyeball will be fixed.  If of interest my surgery is on the 20/09/13 so ask me for an update thereafter.

    My main cause of instability came from the reduction of core muscle strength during my time in hospital (about two & a half months).  Although I worked well with physio this did not fix my problem.  Trouble was that I lost all movement in my right side arm and leg, making it difficult to exercise.  I was released from hospital with a wheelchair and a walking stick.  I took the decision to only use the stick as I reasoned that the more I did, the stronger I would become.  I also had some support from the community physio.  They were very useful in giving me a targeted set of exercises to do daily at home.  These, together with gradually increasing walks gave me back some strength into my core muscles.  It was this that allowed me to manage my instability issues. 

    The daily exercises & walk led onto abandoning the stick, riding my bicycle again and restarting jogging.  What I found was that gently pushing myself to do more worked for me and as I got stronger my balance improved.  I still have some problems, but these are easily manageable.  One of the main ones is getting up and down to tie shoe laces.  Alright at home where I can sit on the stairs, but still a bit of a nightmare if my laces come undone like they did today whilst out jogging just over a mile (we walk the kids to school and I like jogging back afterwards).  There was no raised surface in the vicinity so I had to use the flat pavement.  I always think it must be quite entertaining to watch me slowly lower myself wobbling to the ground and then get up again, but this is well worth it as I can do so myself!

    The other issues for me are that I cannot (very) safely carry my boys or other loads such as packed boxes up stairs as easily and that I feel less steady when I first get up out of bed than throughout the rest of the day.

    I hope this is of some help/interest and is of some relevance to you.  Happy to expand on anything in particular if you wish.

    David

  • FormerMember
    FormerMember

    Hi,

    Just joined today!  My 31year old daughter was diagnosed on June 19th with a Pontine Mass Glioma, situated deep inside her brain stem. A whole host of symptoms brought her GP to ordering the MRI that confirmed this.  She is four weeks out of six weeks Radiotherapy and is still struggling with balance, dizziness and mobility problems. It has also affected her moods and thinking which is very hard for her.  

    We do not know of anyone else with this type of tumour so if anyone has any information or would like to share experiences I would really appreciate it.  We are both members of the Brain Tumour Charity which is great, but I cannot post as she will see it and I need to try and keep her positive as so many personal things have knocked her back these past 4 months,

    My heart goes out to you all and I wish you all the best of days.

    Jx