“It’s Rare and Hard to Spell.”

A Paraganglioma Named Tomas

In 2010, I was diagnosed with a Paraganglioma on my Carotid Artery.

If you want the WHOLE back story on that, check out this blog: Adventures with Tomas the Tumah.  It’s a journal I kept to keep friends and family updated on the journey.

The short version is this:  In June of 2010 when I was about 16 weeks pregnant with my sweet littlest girl, I found out I had a tumor.  It turned out to be a very, very rare tumor called a Paraganglioma.  Paragangliomas are Neuroendocrine Tumors that are associated with Pheochromocytomas.  These tumors are complicated boogers that when found on the adrenals or in the abdomen can cause hormone secretion causing symptoms like spiking blood pressure, rabid heartbeat, excessive sweating and more.  When they’re in the head and neck they don’t secrete these hormones and often the only symptom is a lump (that was the case for me).  We ended up going 3000 miles–all the way to the National Institutes of Health–to have the tumor removed as part of a protocol with Dr. Karel Pacak who is one of the leaders in research on Pheochromocytoma and Paraganglioma.

I’m proud to be a survivor of this “zebra” of a tumor/disease.  For those of you who may have found this website while looking for information about Paragangliomas and Pheochromocytomas here are some places to go for really good information:

1. The Pheo Para Alliance-A patient initiative offering support  and resources for the patients, by the patients.  Also check out the newsletters which are chock full of info.

2.  The Pheo/Para Patient Facebook Support Group–This is a Facebook group that is closed for patient privacy.  It’s active and flourishing with a group of people committed to a supportive environment and accurate information.

Eosinophilic Esophagitis

In June of 2017, I found out I have another rare illness:  EoE or Eosinophilic Esophagitis.  I spent about 3 weeks practicing the pronunciation.  I have it down pretty well now! It’s an allergic/autoimmune condition that causes rogue blood cells called Eosinophils to congregate in my esophagus.  This results in inflammation, structural changes, and decreased motillity.  After prescribed meds had side effects that I couldn’t live with long-term, I jumped into a 4 Food Elimination Diet (Except I also think I should get credit for eliminating Seafood/Shellfish since I never eat them anyway).  Food is a whole thing, it turns out.  Rare, incurable diseases are too.

Trichotillomania/OCD/Dyslexia

I have a dear one with her own laundry list of struggles (Why is it a laundry list and not like…  a grocery list?).  I want to protect her privacy, but a post or two about these things may show up.

 

 

 

 

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9 thoughts on ““It’s Rare and Hard to Spell.”

  1. Pingback: The Exquisiteness of Ordinary | Stumbling Barefoot…

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  3. I found your site after looking through several google pages. I had an extra-adrenal paraganglioma and half of my left adrenal gland removed in May of 2008. Today I learned that the large abdominal mass near my 24 yr old son’s aorta is thought to be a paraganglioma. He also has some nodules on his lungs. He was brain damaged at birth; he looks normal but has short term memory issues and his comprehension ability is around a 5th/6th grade level. I’m not sure he appreciates the seriousness of his diagnosis. I am so glad to find your site. When I was diagnosed there was not a lot of information available but I am glad to see that knowledge has increased since 2008.

    • Tammy–Please check out the resources above. There is information and support available for you and your son. Have you considered doing genetic testing? I moderate at the Facebook site and I know there are lots of supportive people who have dealt with some version of pheo/para stuff.

  4. Hi! I stumbled upon this blog, and it’s like I am reading about my own life (kinda, sorta..). I am 29 years old and was just very recently diagnosed with a paraganglioma (jugulare), Although not pregnant, I am 7 months PP, and the doctors suspect pregnancy (I’ve had 3 in the last 6 years) may have caused this tumor to grow a bit faster than usual. My doctors have chosen to try treating with radiation first, but I’ve been warned that surgery may still be in my future. RIght now I am just researching and surrounding myself with support as go on this crazy journey of dealing with a rare head tumor.

    • Hello Cass…I also have just been diagnosed with a paraganglioma jugulare! I cannot believethat I have just stumbled somehow across you and this web site..??? I live in NYC and I am overwhelmed with confusion..an understatement! Would it be possible to communicate with you by personal email…as I doubt that I will ever find this site again. I AM NOT A TECHIE! Or telephone? My email is slmaspen@aol.com…tel: H 212 737 0848 and cell 917 952 8499. I am hoping that we can be of help to each other in finding h

      • was unable to finish….I hope that we can help each other by sharing information.
        I wish you good health and I hope to hear from you soon. All the best…and thank you for your time and considertion, Sandra

  5. Hi!
    I’m a 38 years old guy with a little son. He have something in common, that I wish we didn’t.
    In 2015 like you I had a “Tomas” on my carotid bifurcation, a 4.5 cm bastard. In 2016 I got ride of him, and I lost my voice during several months to regain it back. My throat hurts and I have a lot of stupid symptoms, like a shopping list you know. Fortunately none of them are preventing me from living a “normal” life, or can I call it the “new” normal life that it’s put on check every 6 months. I hope you are doing well, and if you wanna talk it would be great, at least for me, since we share this crazy Tomas history and being a rare Tomas it’s not easy to share information or find someone to speak about it. Kind regards to you and your dear family.

    • Hi Luis! I’m so sorry to hear that you have been through such a hard journey. Life after the tumor really is a “new normal.” It took me a long time to settle into that new normal. Be gentle with yourself, and know that you are not alone, even in this rare diagnosis!

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