How it was diagnosed

How it began:

In May 2009 I started feeling dizzy when I moved from a sitting to standing position, and sometimes this dizziness made me completely black-out. I could continue to talk, hear and speak during a ‘spell’, but my vision would fade out and I would see nothing but black. Also, I could pretty much sense these ‘spells’ about to happen, so I learned to grab a table, chair, wall, etc and just hold tight for a few seconds. Sometimes it would be over in as quickly as ten seconds, other times it would last upwards of half a minute.

As with most busy moms, I let a few weeks go by before I picked up the phone and called my doctor. Mostly I figured it was just a passing issue, and would get better on its’ own. Partly because I was terrified of the "what if's". Once I accepted that I needed help, my primary care physician immediately ordered an MRI of my brain. I had the test done on June 6, 2009, and while it didn’t provide any reason for the spells, it did highlight a small tumor on my right parotid gland, about 6 to 7 mm on the deep lobe. The image below shows the location of the parotid gland.

The doctors ordered another MRI, this time of my neck, with and without contrast, to get a better view of the tumor. On June 13, 2009 the neck MRI confirmed the parotid tumor to be 6 to 7 mm, and also revealed several thyroid nodules. The right thyroid lobe had a mass 1.4 cm by 2.3 cm, and there were several smaller nodules on the left thyroid lobe.

I underwent an ultrasound on my birthday, June 17, 2009, to get a closer view of the thyroid nodules. The results showed a nodule in my right lobe, measuring 2.8 x 1.3 x 2.1 cm, with mixed cystic and solid components, and suspicious for microcalcifications. It was noted to be quite vascular. There were also 3 other nodules in the right lobe, but all under 6 mm. In my left lobe, there was a mass 1.4 x 0.6 x 0.9 cm, but this did not show the microcalcifications.

A biopsy was performed on June 29, 2009 on the parotid tumor, and nodules on both sides of my thyroid. Everything was benign.

At this point I visited a few different doctors – two ENTs and two endocrinologists – in hopes of figuring out the best plan of action. One ENT wanted to do surgery immediately to remove my entire thyroid, as well as my parotid gland and tumor. One wanted to put me on medication to over-ride my thyroid, and then watch the parotid over time. I wanted to find two doctors who agreed on the course of treatment, so I kept searching for another opinion. I was referred to the Hospital of the University of Pennsylvania and saw Dr. Ara Chalian, and he made me feel the most comfortable with everything. We agreed to repeat MRIs every six months, biopsies once a year, and would just wait and see if things changed. If not, we’d keep watching. If so, we'd discuss surgery.

I stuck with Dr. Chalian, and have watched the parotid tumor double in size over the past two years, while the thyroid nodules have gone down and up in size. I’m told the thyroid nodules are normal, and do not represent a worry as they swell and decrease in size according to your body fluids. So this past May (2011), when the latest biopsy revealed the parotid tumor was definitely a pleomorphic adenoma (a benign tumor), I decided it was time for surgery. These types of tumors usually grow slow and remain benign, but can become a problem if they grow too large and/or become cancerous. While the surgery has major risks of its own, I have decided it's time to get this tumor out of my body before it has a chance to cause any damage!

And so this is where my blog begins, as my surgery is scheduled for September 20, 2011.

Note - the black-outs still continue today (the tumor has nothing to do with them), and I see a cardiologist for them. He has diagnosed me with orthostatic hypotension - basically a drop in blood pressure when you go from sitting to standing. My blood pressure on a good day is 90/60, and drops 20 or more points when I change positions. I've been put on a high salt diet, and now drink Gatorade like it's water (even though it disgusts me). I also take a mild steroid (Florinef), which is supposed to make my body hold onto sodium, and in turn should make me retain more fluids, thus increasing my blood volume. We'll see how this goes, as I just began this medication 6 days ago.