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Thyroid Cancer and Paraganglioma

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I started having problems with my voice in 2002 and went to an ENT who diagnosed a paralyzed vocal chord and performed a collagen injection. At the time they could not determine the cause. The injection wore off and I decided to go to UCLA in 2008 for a more permanent solution. I was really hopeful of getting at least some of my vocal function back. Instead, over the course of the past year I've had a CT, Pet CT, MRI, FNA and MRA tests done and finally a diagnosis. I have three Paraganliomas, two are bilateral carotid tumors and the third is located in my trachea. On top of that I also have Thyroid Cancer. I had a total Thyroidectomy last month and need to do Radioactive Iodine treatment. When I was told about the paraganglioma's I was told that they are benign but because of their locations in-operable. The doctor said I could "choose" to have radiation therapy. I went to see the oncologist yesterday and he told me I have no choice I have to have radiation therapy done or I will have more complications. I then went to see the ENT and he told me they won't be able to correct my vocal chord because of the radiation. I'm really disheartened and depressed. You never know how much you depend on speaking until you can't do it anymore. I could really use some encouragement.

1 reply

Dr. Robert Jackler the chair of Stanford ENT is an ace skull base surgeon. He removed my glomus juglare tumor (a type of paraganglioma) and caused no nerve damage. I know that he also does surgery on carotid tumors. I would check with him before undergoing radiation therapy.

During subsequent surgery to remove the right half of my thyroid, another surgeon mistakenly severed my right recurrent laryngeal nerve causing unilateral vocal cord paralysis. I had two collagen injections, but have not required one for over a year. I also had several months of voice therapy. I still do the vocal exercises 4 to 5 times a week. Most people are not aware that I have vocal cord palsy.

The "Dr Pheo" blog has a list of doctors with paraganglioma experience. He lists one in LA as well as Dr. Fitzgerald in San Francisco.

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