My journey......it's just the beginning.

1 minute read time.

Hello all. I have only just got brave enough to write about this as much I have tried to block it out I was hit by a seizure today which made me decide it's time to talk. It started on oct 17 2012 when I suffered a grand mal seizure at the wheel of my car. The last thing I remember was my right arm forming a claw and feeling like it was being ripped off. I woke up about half an hour later surrounded by paramedics and family along with the truly lovely people who found me. By some miracle I didn't crash, just came to a stop. Initially we thought it was anxiety but a couple of weeks later I was knocked out by my horse bless him! Which brought on another fit. I am lucky to have bupa cover and was referred to Dr Pinto at Spire Hospital in Southampton who is a truly lovely man. He instantly recognised there was something seriously wrong due to the loss of finer motor functions in my right hand and referred me for an MRI there and then. I was scanned for 90 minutes before the news was broken to myself and my family that I have a tumour on my left frontal lobe. I was referred to Mr Paul Grundy who believes it is a grade 2/3 glioma. Unfortunately due to its location they are not sure it is operable but are going to take a biopsy and an attempt at resection during an awake crainiotomy. Does anyone have any experience of this type of surgery? Becky

Anonymous
  • FormerMember
    FormerMember

    Hi Becky  and well done for being brave enough to post! See? It wasn't so hard was it and you'll get some nice replies... and I do think its good to be able to write things and get them off your chest.

    So sorry to hear about your diagnosis and seizures but you have come to the right place and you will get lots of support on here.

    I would suggest you post your surgery question in one of  the brain cancer groups- you can search groups from the tab at the top and you will get some specific advice there.

    Wishing you all the best for your treatment...

    Little My x

  • FormerMember
    FormerMember

    Hi Becky, 

    It sounds like you've had a really difficult, frightening couple of months. I'm so glad you've found the Community, where you'll hopefully find people who have been through something similar to what you're experiencing now. 

    I'm not sure which of our groups relating to brain tumours is most relevant to you, so here's a list of all 4 groups to do with brain tumours.  Have a look and decide which looks most useful, then have a read of what's there and ask a question if you feel ready to. 

    If you would like to know more about the particular type of surgery you'll be having, we have some information about craniotomy over on the main part of the website which you might find helpful. 

    You might prefer to talk to someone about what you're going through. If so, please remember you can give our Supportline a ring, free, on 0808 808 0000. It's open weekdays 9am-8pm and our team will be able to offer you information and support. 

    Hope this helps, 

    Laura 

  • FormerMember
    FormerMember

    HI Becky

    Just been looking at your posts. My partner who is 41 was told in November last yr he had a gioma

    they thought grade 2 he had all the tumour removed in Jan and had a biobsy which showed a grade 3

    so has had treatment since radiotherapy followed by chemo which he is in the middle off

    just wanted to let your know you are not alone and was wondering how you have been since 

    and if you have to have scans often?

    Take Care Tracey