@Jennifer J I wanted to let you know that I had the scope procedure this morning without any numbing spray and it was really easy. However, it was a scope that only went behind the tonsils and did not go down the throat itself so probably is not the best comparison. The ENT I saw was great and after a streak of horrific doctors, I now am on a streak of finding really good ones.
I told her first thing about my MCAS and showed her the packet from TMS and she agreed it would not be safe for me to use the Tetracaine numbing spray. She said that many patients actually prefer not to use the spray and she has had the procedure herself and prefers it without the spray so that was enough for me.
The scope is much bigger than a thread (no idea why my new PCP said this!) and is more like a thick silver wand with a camera on the end. She dipped it in hot water first so it didn't get fogged up and then when it was behind my tonsil, she had me make certain sounds like "ee" or "he" which prevented me from gagging which worked and was uncomfortable but not painful at all.
I explained to her that I had two main reasons for doing this. One is that my left tonsil has been very uncomfortable for about a year (since my MCAS really started) and two that b/c of the auto-antibody that I have correlating with cancer, I just wanted to be sure the tonsil was not inflamed b/c of cancer. Stanford had initially said that some people do full body scans to check for cancer with this antibody but I am not going that overboard and doing all that right now. The lung scan (which showed my lungs, thyroid and thymus are all okay) is good enough for me right now.
She showed me all the pictures of the tonsil and throat (from the procedure) and said there is definitely not cancer b/c if I've had these symptoms for a year, it would be growing and visible and nothing whatsoever was there. She said it is not actually any bigger than the other tonsil, even though it feels that way, and she could see where I had the tonsil abscess (during mono in 2012) which turned black and a tiny piece of the tonsil fell off leaving a hole at that time.
She said food or debris can get caught in the hole (sorry for TMI
) and that could be what I am sometimes feeling (even though nothing like that showed up on the scope.) She said if I gargle with warm salt water 2x/day for the next month it should help the inflammation but otherwise it was all good which was a relief. She said if we wanted the absolute gold standard, she would do a CT scan of my neck but since I am allergic to contrast dye, there is no point and she also did not feel it was necessary at this time.
So, now I have an great ENT for future issues if I need one and am confident the swelling is from MCAS. She said it is not uncommon to have unilateral swelling (since it is always the left side of throat, face, eye, etc, when I get a reaction) and didn't seem worried about this from a cancer perspective. So one less thing to worry about and in case this helps anyone else, you definitely can do this particular procedure without numbing spray.
Sorry to hog up your thread and will not say anything more except to wish you good luck when you do your procedure in a few weeks (months?)
