Hi all - Thanks for all the input on Gastrocrom in my other topic.  I have a horrific ear problem and have discontinued both it and Zyrtec given that they may be connected given the timeframe.

I am hoping that you all can help me understand mast cell disorder complications such as mastocytoma or any ear related manifestation.  I met with an ENT yesterday who believes that I may have skin cancer in my ear canal, given the presentation of tissue deterioration and also deterioration of bone as he saw in a CT scan and recommends surgery to gather biopsies and also do some skin grafting under general anesthesia.  I am overwhelmed to say the least.  Stress is one of my triggers, so for those in the same situation, I'm sure it isn't hard to imagine my state today.

The really frustrating part is that the ENT knows nothing about Mast Cell Disorders.  I was diagnosed with MCAD, but am still suspicious of Mastocytosis given symptoms.  I have stopped Gastrocrom at my MCAD specialist's direction as he says this can rarely make the presentation worse.  I also am researching Zyrtec's rare side effects as ear infection is one and I've reached out to Zyrtec to find out how that presents.  I've stopped Zyrtec too.

Concerns
1.  I do have ear canal skin cancer
2.  I don't have ear canal skin cancer and the doctor is clueless about mast cell manifestations.
3.  I have some sort of weird flesh eating bug and taking one or both of these drugs compromised my ability to fit it.  (I am using antibiotic ear drops, but seems there would be more of a treatment with impact).

I am reaching out to all my Dr's this week for help, but as you all are so knowledgable, didn't want to leave this stone unturned!

I am interested in any similar experience and also how you approach weird stuff with traditional doctors (that are clueless) and anything else that you think I need to hear.

Many thanks all!

Hi nkb,

Sorry to hear you're dealing with this. Can you get a second opinion soon ?

If it helps, while I'm not up on skin cancer in the ear I had level 4 melanoma on my knee in 1998. My gp knew right away what she was looking at because of it's appearance. And because I told her that I'd been watching it grow for a few weeks. It woud itch horribly as a new reddish lump came up threw the
skin. Then that part woud turn brownish black and a new reddish lump would show up.

I'm not sure if all skin cancer is that easy for a doctor to recognize but thought you might be familiar with what I described.  If so, imho, it's probably not a  mast cell problem and needs to be biopsied.
I'm not a doctor tho.

fwiw, imho, sometimes we just need to trust our doctors. They may not be up on mast cells but are more than qualified in their fields of expertise.   I understand your angst more than you know but am realizing the value of having doctors I can trust.

Good luck with this. Marcia

Hi everyone - Thanks for your thoughtful posts - Just a quick update - I do not have ear canal cancer.  I had an appt at the House Ear Clinic in L.A. and two doctors there concurred that I have had a External Ear Canal Cholesteatoma.  It is a benign growth that can be (and was) destructive, mine taking some tissue and eroding bone.  Fortunately, I lost no hearing and the facial nerve wasn't damaged (just exposed).  Hopefully, the situation will remain stable.  I did find a white paper online theorizing that there can be a mast cell connection to this condition. The occurrence is rare -  1 in 300k.  Take care