The Teenage Tumor and Me: My Mini-Parathyroid Surgery and the Norman Parathyroid Center

Parathyroid Tumor

Parathyroid Tumor

I’m back following a parathyroidectomy and a couple days recovery.

I’m tired, my neck is a bit swollen still and kind of sore, I’m bruised (I’m an easy bruiser, though).

And I am happily rid of one thumb-above-the-distal-joint-sized parathyroid tumor that was between twelve and fifteen years old when Drs. Norman, Boone, and Parrack removed it in a fifteen-ish minute outpatient operation that stopped it from sucking the life out of me. The picture above is clickable if you want to see the thing as close to life-sized as I could make it.

I’m still recovering, and still tired (that thing had been growing for a long time), but I’m putting this up now because this is a big damn deal.

I developed the tumor when I was in my early forties. They happen in people a lot younger. They’re more common in people my age and twice as common in women.

  • The fact that the one above was messing with me for perhaps fifteen years is probably part of why I have tongue dysplasia.
  • Why I had bone pain in shoulders, elbows, spine, knees, and right heel.
  • Why I had gastric reflux.
  • Why I felt tired all the time.
  • Why I couldn’t sleep at night.
  • Why my heart would often start racing for no apparent reason.
  • Why my hair was thinning in the front.
  • Why my blood calcium was sky high and my vitamin D was the lowest the OB/GYN who saw me had “ever seen in a live human being” — it was 4.
  • It’s almost certainly the cause of all the damn headaches, including the icepick migraines.
  • It could have been the cause of both miscarriages.
  • And maybe some other things.

I’ll have to have my bone density tested in a couple weeks, but considering the screaming amount of calcium that tumor was pulling out of my bones, I’m not betting they’re in great shape right now.

Why do I think this?

These are all things parathyroid tumors can do. And I already have early evidence that, with that damn thing removed, I’m recovering.

The bone pain went away within a couple hours of the surgery and hasn’t been back, and the headaches went away after the last effects of the anesthesia wore off.

So I’m going to send you to the website that I found, which is where I also went to have the surgery done.

Parathyroid.com

Go to the front page, watch the video, and even if nothing on the page applies to you now, remember the symptoms. This is something a BUNCH of doctors didn’t catch, and it could have killed me.

Considering the dysplasia, I’m not out of the woods yet, but I intend to get there.

But you… make sure that you’re the person who knows what to look for so you can help yourself, or someone you love. ‘Cause…

Tiny, simple, FAST surgery.

BIG. DAMN. DEAL.

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About the author: Novelist, writing teacher, on a mission to reprint my out-of-print books and self-publish my new ones.

30 comments… add one
  • Clare Walker Apr 5, 2016 @ 22:36

    Very interesting! In the video that showed the surgery up close, I didn’t see him check both sides, but on the video that’s narrated by the other doctor (the one where they’re always showing the clock) they made a point to say that both sides are checked and that they often find tumors on both sides, which sometimes contradicts the results of the scan.

    I also noticed a discrepancy b/t the vids regarding whether or not to snip pieces of all 4 PT glands. In one he recommends not doing it, but in the other they checked all 4 routinely.

    Both vids seem to be dated 2011. Perhaps years of experience separate when the vids were actually filmed, and a later one reflects changes in their technique and protocol based on new data and experience. I would be curious to find out.

    I enjoyed watching the actual surgery: I’m a veterinarian, and it was fun to watch a human surgeon at work and geek out about his surgical technique and be jealous that he had two assistants to retract tissue and hand him things…

    • Holly Lisle Apr 6, 2016 @ 10:08

      There was a point where Dr. Norman was recommending a strict minimally invasive unilateral approach, to just get the tumor that showed.

      I read a paper he did on this (it’s linked from the site), and at the point where he discovered that something like 15% (I don’t remember right now) of his patients were returning with a second tumor, he reversed that and recommended checking all four glands every single time.

  • Clare Walker Apr 5, 2016 @ 20:48

    Wow–fascinating! Those new doctors of yours are rock stars! Glad to hear that this thing was finally diagnosed and removed!

  • Marya Miller Apr 5, 2016 @ 11:08

    So glad it is out–nasty little sucker! Even more delighted to hear of the almost instant improvement in certain areas. I hope it is all uphill (an easy uphill) from here.

    I am going to ask my nurse practitioner (we don’t get doctors in the Canadian North, they’re too rare) to see if I can get my blood calcium levels and parathyroid hormone levels checked. Since I see a nurse practitioner, I will probably do better than if I asked a doctor. I have all the symptoms except two; most notably high liver function tests and abnormal protein levels. So I think she will take me seriously.

    Thank you for taking the time to share this and for providing the link to such an excellent site.

  • Karen Mar 27, 2016 @ 13:24

    I’m really glad you found the cause of your suffering and fixed it! That must be a huge relief. I hope you recover quickly and enjoy your renewed health.

  • Margaret Mar 26, 2016 @ 21:51

    Ugh and hugs on the delayed discovery, but wonderful that you’re feeling the benefits already. Here’s hoping the rest of your recovery goes well.

    • Holly Apr 4, 2016 @ 11:15

      As a matter of fact, a stripe of leukoplakia that had been spreading along the underside of my tongue started receding almost as soon as the parathyroid tumor was removed. Two weeks to the day from the surgery, it’s now nearly gone.

      The dysplasia on the right side of my tongue doesn’t hurt as much either. That’s a health problem about which it’s difficult to get an objective measurement without going in and cutting out more of my tongue though. And the possibility of dysplasia becoming cancer is something I can’t ignore.

      I’d be thrilled if the dysplasia just go away, though.

  • Lynda Miller Mar 26, 2016 @ 19:38

    Yeah Holly, I hope you will do better now. Update on me. I’m home today! After 2 months in hospital I finally got to go home the day before Easter. I can’t tell you how happy I am. I’ve already overdone it, but I know better now. Best of luck to you and Happy Easter.

    Lynda Miller

  • Ken Barclay Mar 26, 2016 @ 19:23

    Yes! BIG damn deal!

  • Vera Lamb Mar 26, 2016 @ 13:09

    You have taught all of us a valuable lesson and I can not thank you enough. A plague on all the doctors who missed that which now seems obvious. I wish you the very best of luck in your recovery and extend a thank you to Dr. Norman for returning our teacher to us!

  • JT Mar 26, 2016 @ 5:46

    Glad this went well and it sounds like it will make a lot of things better going forward. Thank you for sharing the information.

  • Jean Mar 25, 2016 @ 20:43

    That site is tremendous, and the videos are worthwhile.
    Noticed my calcium has been creeping up and was at max on the normal range last time it was testing. I know what I’ll be asking my doctor in June.

  • Deb Salisbury Mar 25, 2016 @ 10:45

    I’m so glad you caught it in time, and that you’re feeling better already. Wishing you a quick recovery, and no more migraines!

    • Holly Lisle Mar 30, 2016 @ 11:36

      I’m hopeful. I’ve had a couple of headaches now. I’m holding my breath on the migraines.

  • Laura Mar 25, 2016 @ 10:20

    Thank you for the updates and for the info about this. Wishing you a full and speedy recovery for both this & your upcoming surgery.

    • Holly Lisle Mar 25, 2016 @ 10:32

      ๐Ÿ˜€ Thank you very much. Not looking to the next one anywhere near as much as I was the last one.

  • Linda Mar 25, 2016 @ 9:44

    How scary! I checked the site and read somewhere on it that people don’t make it over 25 years with one of those tumors. I’m so glad yours was caught in time. So are tumors like this only found thru blood work? I’m thinking something that big should have been felt at some point. Anyway, here’s to many more years of reading your books/taking your classes!

    • Holly Lisle Mar 25, 2016 @ 10:32

      They usually are. High serum calcium, high PTH, and low vitamin D are tip-offs.

      But this isn’t 100%.

      I’ve included the link here on how parathyroid tumors are diagnosed.

      • Linda Mar 25, 2016 @ 12:53

        Thank you! This is great info to have.

      • Rez Mar 26, 2016 @ 9:26

        Same with thyroid. The TSH test is very sensitive, so it must be correct, right? *BEEP* wrong…

        Doctors need to treat the patient, not just the test results.

  • BJ Steeves Mar 24, 2016 @ 15:45

    I’m am glad that they found the cause of all your physical suffering. May your recovery be swift and complete!

    BJ

    • Holly Lisle Mar 25, 2016 @ 8:29

      Thank you, BJ. I really appreciate it. I’m starting to feel better.

      Because that tumor was in there so long, it’s going to take me a little longer to recover. I’m okay with that. It’s out. I can move on.

  • Rez Mar 24, 2016 @ 14:25

    You know you had a good one when the doctor wants to put what he extracted on display as a warning to others, and labels it “teenage mutant ninja tumor” ๐Ÿ˜€

    And this is why I bang the thyroid drum loudly and often — it too is often downplayed or missed entirely, yet can destroy your life.

    Glad things are looking up. And next Halloween you’ve got your costume all ready: “…and this is where the vampire bit me.” ๐Ÿ˜€

    • Holly Lisle Mar 25, 2016 @ 8:23

      Lol. There isnโ€™t even going to be a scar. Itโ€™s a on-inch incision that they cut along an existing skin crease in my neck.

      I came home with a tiny Steri-Strip covering it, and thatโ€™ll come off on Monday.

    • Holly Lisle Mar 25, 2016 @ 8:30

      “And this is why I bang the thyroid drum loudly and often โ€” it too is often downplayed or missed entirely, yet can destroy your life.”

      I totally understand.

      I’m tempted to go crusading on parathyroidism.

      • Rez Mar 26, 2016 @ 9:20

        I strongly suspect they are the same crusade viewed from different horses.

  • stephanie Mar 24, 2016 @ 13:41

    Wow, that is crazy stuff right there, especially the bit about a whole lot of doctors missing the damn thing.

    Hugs and glad you are already starting to feel better. Good luck on the next bit of ‘fixing stuff’ you need to do to be all the way back to better.

    • Holly Lisle Mar 25, 2016 @ 8:27

      When I told my doctors I’d known about the tumor for all of three weeks before they were prepping me to remove it, they were astonished.

      After they took it out, they were angry. Dr. Norman said the doctors who had seen me over the years and who hadn’t caught this were “asleep.”

      He said a few more vigorous things, too—I really liked him. It was good to see someone passionate and angry about incompetence that cost me a lot of pain and put my life at risk.

      He said I needed better doctors—and I’m happy to say that now I have them.

      • Texanne Mar 26, 2016 @ 14:50

        Oh, wow, Holly–
        This is great news! I’ve “watched” you suffer so much pain over the past eight or nine years, and finally, finally, it looks like the medics finally figured it out. The end of migraines! Oh, man, that is terrific!

        I wish the rest of it (the tongue trouble) would disappear as easily (remember, ‘easily’ is a relative term here) and give you as much relief. Though there is more suffering in your near future (from the dreaded surgery), I hope that it will finally (that word again) end when the docs take away the bad cells from your tongue.

        You know, a lot of people wouldn’t have put in the work and time to track down this evil little tumor. Good on you, Holly, for once again putting your indomitable gene to good use. ๐Ÿ™‚

      • stephanie Mar 30, 2016 @ 1:00

        I agree with him. (And probably all the ahem–more vigorous things–he said too.)

        It’s scary that this got missed for so damn long. Seriously scary.

        Very glad you now have better doctors. Hope that continues to be the case for you (and anyone else who runs nose first into something along these lines.)

        Will keep you in my thoughts as progress on the next surgery moves forward. Fingers x’d for an equally excellent result the next go round. (I know, I’m an eternal optimist… but you got this, Holly.)

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