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Von Hippel Lindau Patient - Right vestibular nerve tumor

Feroz
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Hi All,

I have VHL and I was wondering if there is anyone out there can help me. 

I had a MRI Brain scan which I have annually and they incidentally found a lesion on right inner ear which then resulted in a MRI IAMS scan and that report stated I have a small lesion on my inferior right vestibular nerve and there is no evidence of an Endolymphatic Sac tumor. 

has anyone had lesions from VHL on their vestibular nerve or know if this can occur etc?

I am concerned maybe they are Mis diagnosing me when it could be a Endolymphatic sac tumor considering having VHL.

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    Hello Feroz, 

    I hope that you will hear from other members of our forum who have been diagnosed with Von Hippel-Lindau syndrome and who have had lesions on their vestibular nerve. I have not come across many members on the forum with this rare condition but if you would like to talk things through with one of our cancer nurses, you are welcome to give them a call on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm. 

    If you are concerned about a possible misdiagnosis, it might be worth considering seeking a second opinion or talking to another specialist about your fears. You can find out more about getting a second opinion on this page. 

    I hope that you manage to talk to an expert in VHL soon, that they answer all your questions and that you get the reassurance you need and the confirmation that there is no evidence of an endolymphatic sac tumour. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

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