Cranial alien!!

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  • I'm in a quandary!!  11 years ago I was experiencing blackouts and balance issues that led me to the Neurologist at Southmead hospital in Bristol. I had a very abnormal EEG and MRI showed a fairly large
  • Lesion in the Petrous Apex. Due to the location of what we now call the Cranial Alien a biopsy  was considered necessary but how to do it? A MDT decided that an ENT surgeon would attempt it through my nose. First attempt caused a massive bleed so was abandoned, then 6 weeks later another attempt was made without success, this time I lost most of my CSF - SO my little alien has sat, unidentified, in situ since then! Over the years nothing much has changed - had a few CTs done after falls etc.  About 6 weeks ago I had yet another fall and after 4 weeks still felt odd, GP wanted to rule out a bleed (I'm on Warfarin).   Good news was there was no bleed But.... The little blighter has decided to grow!!
  • A&E have written to my GP to organise a MRI - My gut feeling is "what's the point?"  there's absolutely no way anybody is going to mess about with my brain again so I refused the MRI. HOWEVER now I can't think about anything else - my headaches are horrendous, my balance is that of a drunk and STILL nobody knows what the damn thing is!!
  • I just don't know what to do!!!! 
  • Hi Ladyblue

    a warm welcome to the group. Oh what a journey you've had! 

    I'm no expert but I think you might be best to give your GP a call and chat through with them how you are feeling and express your fears about the MRI. Sometimes its harder to deal with the unknowns than the hard facts so there may be an alternative scan that can be done to determine what's going on or perhaps even some bloodwork would give them some clues. Until you ask though, you're not going to know.

    My husband has a stage 4 brain tumour and he gets himself so anxious about going for his MRI check ups and like you says "what's the point" but it gives the doctors a picture of what's going on and then they can take things from there with your consent. 

    This group is really safe supportive space so hopefully there will be someone within the community with some personal experience of the same lesion as you that can put some of your fears to rest.

    If you feel you can't talk to your GP please remember you can  call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    sending you a huge virtual hug. 

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm