Hello Dr. Henry,

I have had HIV for nearly 20 years now, and over the last 5 years, my parotid glands have gradually enlarged - and have now reached a point which is actually disfiguring. I have had an MRI performed within the last year, and the results have indicated benign tissue swelling/growth (my memory is vague here) - my doctor told me my treatment options are limited to radiation therapy (IMRT) or surgery to remove the tissue. I can find very little online reference to radiation therapy for my specific condition - ie, i don't have cancer -- so would a lower than normal intensity treatment be an acceptable treatment, and would that lessen the likelihood of the complete destruction of my parotids from this treatment? I also can't find any reference to the percentage of individuals who DO suffer these severe side effects, and their demographics.

I also am interested to know if a needle drainage procedure followed by a toxin injection could be a third treatment option for me? And, what kind of doctor should I see about this - an ENT?

Also - do you know if insurance companies routinely cover parotidectomies? That seems like the least damaging option (unless the drainage/toxin is a real option).

Thank you for your help. Most doctors, in my experience, don't realize who depressing and damaging this type of disfigurement causes for those of us already dealing with other difficult medical issues; i feels as though this problem has been discounted by the medical profession as unimportant - as not impacting a patient's health. Whereas, it really does affect my mental and emotional health, it's unavoidable. In addition to you answering my question, I hope that in your capacity as a research physician you will consider that problems such as this (parotid) do merit medical attention, research, and relief. I have seen an increasing number of hiv-positive people with this problem, in the same way that I saw the emergence of lipodystrophy, and then lipoatrophy among my fellows in the last 15 years.

Thank you for your help.

Best,

Jon

Patients that have parotid enlargement due to polycystic disease (cancer ruled out) can have some cosmetic improvement (of varying duration) with low dose radiation. I have had perhaps 7-8 patients undergo that procedure with generally good results in all but one patient. I am not familiar with drainage/toxin approach and would be skeptical unless shown data regarding efficacy. If any reader wants to comment or provide references please do so! KH