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Was it difficult to determine if your paraganglioma was active?
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (14)Comment receiving replies
@fas when is your surgery scheduled? Recently, you'd hoped "4-5 weeks" wait?
My experience w Mayo is, very responsive... they were ready to schedule my partial nephrectomy last Fall less than 2 wks after diagnosis. We waited 1 more month because my husband had already delayed his torn rotator cuff surgery for me, and I finally talked him into scheduling it.
We were quite a picture in the airport a few wks later, him w a broken wing pushing me in a wheelchair due to my vertigo.
Were ready for the next expedition now.
Sorry to rattle on; just excited to find someone else in the same lifeboat as me! When is your surgery?
Replies to "@fas when is your surgery scheduled? Recently, you'd hoped "4-5 weeks" wait? My experience w Mayo..."
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@gangcarotid1 I agree Mayo is very responsive, I was thinking end of April but actually they let me know 2 days ago that my surgery is April 2nd! So, it's exciting and not yet scary (I am sure I will have a freak out the day before!!). Just trying to focus on eviction of this unwelcome trespasser and getting back to 'normal' although as we both agree this is TBD...
I STILL have a hard time wrapping my head around the fact that not only do they (doctors) think it is not secreting they also believe all my 'symptoms' are not linked!!!
I guess we will soon find out....
Anyway, I agree it is lovely to communicate with someone else in this situation. Thanks 🙂