Angiomyxoma

I had over the years several angiomyxomas and also a glomus tumor on my fingertip with amputation of fingertip( also a vascular tumor)

In the last 4 years i had a angiomyxoma in r hip,( after 4 operations to undo the impingement of the nerve only then did they pick up the angiomyxoma and removed. I also  had  a angiomyxoma in my nose cavity which was removed. I also had a angiomyxoma  in my lowerleg which was removed last year. 

My problem is i live in South africa and the radiologists hardly ever see a angiomyxoma and i really have to suffer and it must be first become very painfull and debilitating before it is picked up by mri or guided needle sonar and also because it always wrongly diagnosed as either neuroma, lipoma or just unknown lesion the doctor doing the operation not always prepared for this very weird” thing he find and because of the vascularity mostly if removed very bloody” and not always removed deep enough.  

I would like to know what else can be done to pick up the angiomyxomas in whole body more easily  beforehand?  The oncologist said “ whole body weighted mri scan” or PET scan? Which one is better because in my case normal MRI did not pick up the angiomyxomas

 

 

  • Hi Joretha and welcome to the forum.

    I'm sorry to read that you've had to contend with several angiomyxomas over the years and that treatment in South Africa hasn't been the best due to them not coming across this on a more regular basis.

    We do have some general information on our website about angiomyxomas on our website just here which I hope will offer some insight but as we're an online support forum we are unable to answer these questions. You're more than welcome to make a post in our nurses section of the forum but they can only really answer in regards to the UK health care system as this is where we are based.

    I'm sorry I can't be of more help but I do hope you're able to find the answers you are seeking to make it easier to identify the angiomyxomas.

    Kind regards, 

    Steph, Cancer Chat Moderator