How did we get to this point..................

I was recently diagnosed with multiple Paragangliomas. This is a very rare condition that I had never heard of prior to four months ago. My journey to the diagnosis has taken seven years. It all started back in 2002 when I noticed my voice was hoarse. I had just had a cold so I thought it must just have been a bad cold that didn't seem to want to go away. The hoarseness continued but most of the time my voice was fine so I didn't really think about it. Then in 2003 I went to see my primary care physician (pcp) who referred me to an Ear, Nose and Throat specialist. The specialist looked down my throat and ordered an MRI. Once the results were back I was told they could not determine the reason but that my left vocal chord was paralyzed. There is no cure but they could inject collagen in the the vocal chord to make my voice sound better. Thinking that was all there was to it I had the procedure done and forgot about it until my voice started getting worse again.

Fast forward to 2008, I just had changed jobs and of course I got a cold that made my voice quit on me. Instead of looking for a quick fix this time I decided to go to UCLA to see the expert on voice disorders. They have a procedure that can reinnervate the paralyzed vocal chord. I went to see Dr. Berke and he ordered an MRI (no suprise there) but also a PET CT scan and then an ultrasound of my neck. Now this is where things started to get a little sticky. I had just started a new job..........and we all know what the economy is like. I was taking off all this time for doctor's appointments and knew that I would not be able to have the surgery due to the fact I had not been employed a year. I work in HR and no one knows better than me that an employer does not have to grant you medical leave time unless you have been there a year. It's with that in mind that I decided to put off the surgery a year.



The year is 2009 and with my freshly minted year of service under my belt, I decided to go back and see the doctor about that surgery again. Back to Dr. Berke I went with a determination to get this done. This time they send me to get a biopsy and a MRI/MRA of my head, neck and chest. It's crazy but I never suspected there could be anything wrong other than the unexplained paralyzed vocal chord. I don't smoke, drink, do drugs or chew tobacco plus I've been tested many times and no doctor has ever said they see anything wrong on any of the tests. Since they made me have all these tests, I decided to do something I had never asked before. I wanted to know the results of the tests. The doctor's office said I would have to come in and discuss them with the doctor. Now I was starting to get a little scared but I was assured by all my friends that this was normal and it was probably nothing.



Unfortunately, it was not nothing. The MRI from 2008 had shown three lesions in my neck/chest area that were called Paragangliomas which are considered benign. Plus as an extra side note, the biopsy showed I had Thyroid Cancer as well. That is four tumors in my neck/chest and all I had wanted was to have my voice fixed. Dr. Berke explained that the paragangliomas were inoperable because they were wrapped around my carotid artery and jugular artery and the surgery would be too risky. However since they were causing my cranial nerve issues (vocal chords) that I would need to have radiation to stop their growth. I would also need to have surgery to remove my thyroid as soon as possible and would need radiation for that as well. As for my voice we would need to wait until after the surgery for the thyroid to discuss it further.

At this point I haven't really panicked yet. Thyroid cancer has a nearly 100% cure rate and the other tumors are benign right? However, I am very frustrated about my voice which is what started me off in search of a cure in the first place. Okay you can call me shallow but that is my main concern at that point. I mentioned before that I work in HR and need my voice to be able to communicate with employees and management. Believe it or not how you sound goes a long way in determining how you are perceived by everyone around you. Not to mention social situations, have you ever gone on a date and not had the ability to be heard or understood?

This is it for tonight. I'll be back tomorrow with more on radiation and frustration with insurance and doctors.

TTFN