“HIV” still causes EVERYTHING – part 2

 Posted by on 2010-11-13 at 8:00 pm
Nov 132010
 
painful parotid gland
I had my first parotid cyst at least 25 years ago, long before I ever tested “positive”.

I blogged in March about being diagnosed with Bell’s palsy, presumably caused by “HIV”, simply because I tested positive.

About that same time I began to experience what I thought were “swollen glands”, a condition I frequently had as a youth.  When I didn’t feel good, or had a fever, the first thing Mom and doctors would do is feel up under my jawbone for puffy or swollen glands, so I didn’t think too much of it at first.  As months passed, the swelling increased and I could feel a couple of nodules.

I finally became concerned enough to discuss the problem with my new general practitioner doctor.  She ordered a CT scan, which revealed “two partially cystic complex mass lesions… that may represent a benign entity such as benign lymphoepithelial lesions of HIV.”

Yep, that’s probably what it is, simply because I tested positive on a polyreactive antibody test 12 years ago, but we can’t rule out, the report continues, “Warthen tumors, or first brachial cleft cysts, neoplasm such as benign mixed tumor, mucoepidermoid carcinoma, adenoid cystic carcinoma, or necrotic nodal metastatic disease may produce similar appearance and cannot be excluded.”

I was then referred to an ENT (otolaryngologist) who performed a FNA (fine needle aspiration) biopsy. Those biopsy results were not conclusive either, reporting only a finding of “atypical lymphocytes”.

According to this specialist, these cysts are common in people with HIV.  Interestingly though, just in casual conversations since this has happened, I’ve discovered two acquaintances who have had benign parotid cysts removed.  Neither of them are HIV-positive.  What are their cysts “related” to, if not HIV?

Even more interesting is that this is not my first experience with a parotid cyst.  I had one right at the jaw joint more than 25 years ago.  The fine needle biopsy done at that time was enough to relieve the pressure and it disappeared.  The doctors at that time seemed puzzled, but settled on a diagnosis of cat scratch fever once they learned I owned a cat!

<sigh>  Oh well.  I can’t deny that the cysts exist and are not going away on their own.  They are uncomfortable and I want them removed.

The surgeon will have the cysts biopsied while I’m still under anesthesia, and if they happen to be malignant—less than a 1 in 4 chance, based on what I can find online—she wants permission to remove all or most of the parotid gland.

I leave it up to those morbidly fascinated enough to google all of this for themselves, but removing the entire gland would represent the loss of a sizable chunk of real estate from my already distorted face due to the Bell’s palsy (see video).  I really hate the notion that I’m expected to give consent to additional surgery based on information gathered while I’m anesthetized, but on the other hand, I see the logic of not having to do a second operation.

Besides the concerns of my already fractured vanity, is the real possibility of damage to the facial nerve on that side of my face.  The damaged facial nerve on the left side of my face has not yet fully recovered, and now the one on the right is being put at risk.

  3 Responses to ““HIV” still causes EVERYTHING – part 2”

  1.  

    Jonathan,

    Thanks yet again for sharing your story so candidly. It’s curious that you had an experience with a parotid gland cyst before you became “HIV+” but now this one is hiv-related. hope everything works out well with your upcoming surgery.

  2.  

    Wishing you the best results in your surgery…My prayers & positive energy are with you..Lots of bear hugs!

  3.  

    Was just browsing Dr Mark Sircus blog at IMVA site, with regard to iodine uptake for radiation. One of the list of possible side effects of Iodide was Parotid Gland Swelling…. On another note one IV Dr adds 10cc of baking soda to his IV vitC and has noted vastly improved outcomes.

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