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Saved By Children’s Books After the Experts Failed

Post Published: 02 April 2010
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Category: Dear Thyroid Letters
This post currently has 13 responses. Leave a comment

(Written by Donna, benign tumors, radiation exposure)

Dear Thyroid,

You never had a chance, did you, poor thing. When I was a baby, I had enlarged sinuses, and the treatment for this in the 1950s was massive, concentrated doses of radiation to the neck. My parents were presented with the choice of dead baby or irradiated baby-some choice, eh? As the first consequence of my Chernobyl-like blast, my teeth started decalcifying in fourth grade, much to my dentist father’s chagrin. That began a life-long dental issue with bonding, which continued until my teeth were all capped.

At 27, as she drove me to a hospital, my mother told me my thyroid history (which I did not know), and added that I was going to be tested for thyroid cancer. She went on to mention that before my parents went to England several months ago, they told MY story to my younger brothers, who would then clue me in in case something happened to them. They didn’t think I could handle the truth of my health issues. Of course, I was shocked and appalled. The test was administered and I guess I passed, because I was told that I had nothing more to worry about.

Fast forward about 20 years. I could feel that I had a lump in my neck and my local library was presenting a seminar on thyroid diseases, so I thought I might get some information. The doctor discussed hypothyroidism, hyperthyroidism, Graves, and Hashimoto, but nothing about massive doses of radiation. After the program, I talked to the doctor, who, upon hearing my story and looking at my neck, advised me to see an endocrinologist ASAP. I got a recommendation and after sonography and my first, exceedingly painful FNA, the doctor said that I had nodules, they were benign, and my real problem was that I had to lose 20 pounds. To this end, he wrote me out a prescription for the new wonder drug, fen-fen, which luckily, thanks to my insurance not covering it, I never took. As information came out about aorta problems, I shopped for a new endocrinologist. The next guy gave me an even more painful FNA and then sent my biopsy to a lab that didn’t accept my insurance. What fun THAT was! After that fiasco, I sort of gave up on monitoring you, even though the lump in my neck got bigger every year.

Which brings us up to the present. I attended the Library Conference in Chicago last August. A panel discussion on memoirs caught my eye, especially because one of the authors, David Small, was a Caldecott winner for his illustrations for children’s books. His memoir was a graphic novel entitled Stitches, which recounted his battle with thyroid cancer, as a result of being irradiated as a baby (!!!). This made me sit up and take notice. I had never met another one of my fellow sufferers and people were taking HIS book very seriously. When I got back to New York, I got one more endocrinologist and she was a winner. I was finally given a very thorough examination, a sonography-guided FNA, a diagnosis of benign/indeterminate and the suggestion that it was time to take the right thyroid (over 4 cm) out. We were in total agreement.

I visited an ENT surgeon who echoed the diagnosis, and sent me for a head and neck CT scan. This is where things got extremely complicated. I got a call from my surgeon a few days after the scan who informed me that I had a 3.6 cm meningioma (benign brain tumor) at the left occipital lobe, virtually on the same plane as my right thyroid nodule. That really threw a crimp in my day! Thyroid surgery was postponed as I collected a neurologist, an MRI, and a neurosurgeon, who explained that my tumor was big, it was in a bad place (wrapped around veins), and that I would be having a craniotomy, with follow-up gamma knife surgery because they couldn’t remove all of it. The meningioma was also a result of the radiation. However, all doctors were in agreement that I should proceed with the thyroid surgery, and I had it the beginning of February.

The first good thing was that you turned out NOT to be cancerous, so I didn’t have to have the other side out. The second good thing was that I could turn all the way to the right side, and sleep very comfortably for the first time in years because you were almost wrapped around my windpipe. I now face another MRI at the end of March. If the meningioma has grown, it comes out immediately. If it hasn’t, I have a year to decide when it comes out…so far I am asymptomatic, which adds to the weirdness of the whole situation. If it hadn’t been for David Small kicking my butt to get treatment for you, my dear thyroid nodule, I would have discovered the meningioma through headaches, seizures, field of vision loss, and ataxia. So the moral of this story is that if you’ve been irradiated as a baby, take it seriously. And I apologize to you my little butterfly-turned-goiter, I should have treated you a whole lot better.

(Bio) My name is Donna Ballard. I am a 59-year old librarian on Long Island, NY. I am married and have a 27-year old son, who is also a librarian (and so is my husband!). I was born in Phoenix in 1951 and have been married for 38 years. I have traveled extensively across America, and have been to Ireland four times, in conjunction with a digitizing project from my husband’s university.

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13 Responses to “Saved By Children’s Books After the Experts Failed”

  1. Bee says:

    it amazes me what we continue to learn from and thru our children or their children or from books about all children.Seems like you had to walk all the way around the house ,dowm the street, around the block, and then in thru the front door to get your news…too bad the delivery system couldn’t have been a little speedier,but glad you’re on a more direct route for recovery. Thanks for sharing your story. Fascinating…

  2. Dear Thyroid says:

    Bee – I couldn’t have said it better myself. You’re absolutely right. Can you believe what Donna had to go through to FINALLY get on the right course?!

    What’s so sad, in my opinion, is that too many of OUR thyroid stories are similar in terms of misdiagnoses, mistreatment and totally missing the mark until we figure it out…

    Love the show of support.

    xo

  3. Robyn says:

    Donna,
    What an interesting story. Unfortunately for you, it’s also your life. As you know, irradiation has a history of being treated a bit cavalier-ly–only decades later do we usually find out the consequences.

    I hope your meningioma remains silent and does not grow. A good friend’s INFANT just had a craniotomy and I imagine that’s doesn’t make for good time.

    Although, then you’d have ANOTHER good story!

    Thanks for sharing with us!

  4. Erica Munn says:

    I love the story. I will write my story soon

  5. Dear Thyroid says:

    Robyn –

    I love what you wrote, Robyn. I agree, Donna’s story is very unique.

    xo

  6. Dear Thyroid says:

    Erica – Thank you for lending support to Donna!

    We look forward to receiving your story http://dearthyroid.org/submissions/submission-guidelines-dear-thyroid-letters/

    xo

  7. HD inOregon says:

    Donna,

    Thank you for sharing your most interesting story. I wish you best of good luck with the meningioma. We’ll keep our fingers crossed for you, and we are sending healing thoughts your way.

    Radiation exposure is one of the few known causes of thyroid problems (including cancer), but in the 50s our learned friends in science and medicine thought is was the cure all and had few side effects. Now we know better. — Last fall I visited Hiroshima in Japan. A city intimately familiar with the effects of nuclear fall-out and thyroid problem. It was a very haunting visit for me (Knowing that, had the war in Europe gone only a few months longer, my home town in Germany might have been next).

    Thanks again for you remarkable story!

    HD in Oregon

  8. Dear Thyroid says:

    HD – WOW. I didn’t know that snippet of detail regarding your history. Unbelievably frightening. Also, I haven’t seen much information by way of thyroid disorders and links to radiation. If you have links, I’d love to check them out and learn more about it.

    I know that it’s been a debate, shall we say, for a while.

    Thanks for being so supportive of Donna.

    xo

  9. Thank you, Donna, for sharing your story! I’m so very glad you finally found an endo who listens to you and takes you seriously! You’ve been on quite the rollercoaster ride to get the care you need. I truly hope the meningioma lies dormant and does not cause you any further problems.

    xoxo,
    Joanna

  10. Dear Thyroid says:

    For reals, Joanna!

    Great show of support. Hoping her meningioma is dormant for good, too

    xo

  11. Donna says:

    Hi, Donna here! Thank you so much for reading my story, and especially for your kind comments. To update, had my first blood test when I went back to work 2 weeks after my partial thyroidectomy. My T levels were normal so no synthroid yet-will be doing follow-up blood tests to make sure all is OK. I have my next MRI Monday and a consult with my neurosurgeon April 13th, at least then I can start to plan my future. Bee and Joanna, you are so right that I was looking for healthcare in all the wrong places-I wish I had discovered Dearthyroid sooner-it is a fantastic resource for the confused. Also I was more or less told, by my family and various doctors not to take this all too seriously, after all its just possible thyroid cancer-I think that attitude has been addressed in other posts…don’t short-change yourself people, get help! And if you haven’t already, please please read Stitches by David Small, it was life affirming for me.
    Thank you Dearthyroid for letting me tell my story.

  12. Elizabeth C says:

    Donna, what an amazing journey you are on. Please know that my thoughts are with you. I hope you find yourself on a path towards health and happiness!

  13. Christine says:

    Donna:

    Thank you for sharing and opening up your world for us all to have a glimpse into. I cannot imagine…. I am so grateful that you are here.

    I hope that you will be able to update us after your MRI and subsequent meeting with your doctor. I know there are so many of us here wishing for your greatest health! (hugs)I am hopeful for all your plans for your future 🙂

    I am on my way over to Amazon.com to get Stitches by David Small – the way I see it is a must read. Life affirmation is ALWAYS a good thing.

    Be well, take good care of you, and keep us posted – please!
    You remain in positive thoughts

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