update on scans

batley
0 Recommendations

hi people , update on my results , from my mri , brain and spine , i got quite a few more small tumors in brain and spine , my neruo sergon dont think my hadpain is commin fron these, what shocked me is , that more and more keep commin , anyway he think i have a pheo again , but told me to get the bigger test done , he was saying about them not just goin on the glands, so ive contacted my vhl doctor to try and get this test done i think its a mbim test somethink like that , its funny cause when i was in germany they told me i have one on the adrenal gland they left in and england cant find it , but all my notes got lost when i left germany , but from my results im ok about it i supose gettin use to gettin told now , it just frigtened me on when or if they grow , the fear of unknown , there there but what they do is another filling u go threw ,

3 replies

joyceg98
  • By joyceg98
  • Posted June 12, 2008 at 11:46 am

I think they are talking about an MIBG, which is a nuclear medicine test used to locate a pheo somewhere in your body. They can occur anywhere on a line from your earlobe to your groin, so that's a lot of territory to cover.

With an MIBG, they give you a specific tracer that seeks out the pheo cells. Then on the scan, those cells light up like a lightbulb so they can see where that little pheo is hiding.

It's not perfect -- it finds about 85% of them -- but it certainly can be helpful, and is very much worthwhile in a situation like yours.

Best wishes,
Joyce

MARYWEETMAN

Lesley,

It would certainly be advisable for you to go for the tests for pheos which is as Joyce describes. This will help to sort out your situation and whether or not any treatment is needed.

I accept your difficulty with the fact of more small tumours being found in on your MRI scans, and living with uncertainty is perhaps the most difficult part of VHL. However it is wise for treatment only to be advised when really needed, and hopefully your scans in future will show no change, but of course this cannot be guaranteed.
Mary.

batley
  • By batley
  • Posted June 14, 2008 at 8:03 pm

thankyou for the replys , hi mary by the way , i think when im told i have more tumors i take the news quite well , and i deal with it myself at the time of being told , i will move forwards and try and get the test done for a pheo again , if i can avold treatment i will cause there is only me who my kids rely on , and i always take good advice on board so thankyou for giving me that ,

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