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from the Experts at the Norman Parathyroid Center

Interesting stories of hyperparathyroidism we see every day.  Parathyroid blog published bi-weekly.

Author Archives: Dr. James Norman

The Making of Parathyroid Punk Music Video

The Making of Parathyroid Punk Music Video

Parathyroid Punk is a amazing music video who’s purpose is to teach about hyperparathyroidism caused by a “punk” parathyroid gland that makes people miserable by causing high calcium. Here is my story and the genesis of Parathyroid Punk!

PunkVideoFront

Link to the video is at the bottom of the page.

My name is Chrystene Ells. I am a 49-year-old filmmaker, artist, animator and puppeteer. I have probably had hyperparathyroidism for about a decade. In 2004 I began to have ‘spells’ of total surreality, where the world felt as if it was falling away, and/or I was going to pass out. I had increasing bone pain in my spine and hips, searing kidney pain, and even though I have been a vegetarian and vegan for many years, my cholesterol was so high that, as one cardiologist put it, a ‘normal person’ would have to eat a ‘bucket of lard’ every day to have my cholesterol numbers. My skin dried out and formed strange callouses and cracks, my hair fell out, I was plagued with hives and insomnia, and my memory and cognitive abilities slipped away. My joints were jolted with screaming pains, and I grew spurs on my heels and elbows. I had pain in my wrist bones, total exhaustion, and a dulling of my overall emotional state. My tongue periodically swelled up, and I had a lot of strange issues with my eyes, which would suddenly stop tracking in unison, separate, and give me double vision for several minutes at a time. I was just completing graduate school when I felt my mind disappearing, and I barely crawled to the finish line of completing my thesis.

Eventually in 2011, over a 24 hour period I had a number of seizures or transient ischemic attacks (the doctors were never sure which), and this marked the beginning of a terrifically increased decline in my health and mobility. All through this decade of vague illness, dull wits and pain, I saw over 20 doctors. I saw five general practitioners, and was sent to four neurologists, two ENTs, two allergists, a nephrologist, a urologist, two orthopedic surgeons, three cardiologists, a podiatrist, and of course, when no one could diagnose me, a psychiatrist. I had innumerable pints of blood drawn and tested, MRIs and CT scans of my brain, ECGs, EEGs, ultrasounds of my uterus, kidneys, and neck, and predictably, a number of pharmaceuticals prescribed. Doctors guessed that I was suffering from some kind of weird migraine, or Multiple Sclerosis, or Lyme disease. I was given scripts for antidepressants, seizure medications, Lithium, hormone replacement therapy, and pain medications… but somehow I knew the doctors were on the wrong track, and I refused to take any of these medications.

It was a complete mystery. And I just kept getting sicker. My life was being drained away.

I got a new doctor!

Then, in December of 2013, I got a new doctor. She did a full blood work up on me, and discovered that my calcium was high (11.5) and my PTH was also high (172). She told me that I might have ‘mild hyperparathyroidism’. (editor’s note: mild? This lady is dying of this disease!). I had never heard of the parathyroid gland before, so of course I went straight to Google and a couple of minutes later, in complete astonishment, I was reading parathyroid.com.  Suddenly — and finally — I had ONE answer for all of my strange, seemingly disparate, health issues. I had a parathyroid tumor! 

That Little Punk Parathyroid Gland!

Parathyroid-Punk Music VideoMy first thought was: “That little PUNK!” One little PUNK TUMOR had been ruining my life for ten years! And my second thought was, “Why don’t doctors know about this?” These two thoughts collided in my brain, and the concept for a ‘medu-tainment’ video starring a punk rock tumor puppet was born. The image of this punk tumor bragging about all the hell he causes in the body, set to a raging punk rock song, seemed like a great, cathartic way to confront some of the frustration, pain, and despair I had lived with for ten years, and at the same time, the creation of a copyright-free puppet tumor Public Service Announcement about Hyperparathyroidism that could go viral online seemed like a fun way to try to get the word out about the disease.

The lyrics for the first verse came to me immediately:

    • I’m a Parathyroid Tumor and I live in your neck
    • I’m a tiny little jerk, but I’ll make you a wreck!
    • “Para” means “close to” that other famous gland
    • But don’t confuse me with the thyroid, son, I’ll get out of HAND!! 

It was clear to me after reading parathyroid.com that I needed surgery, so I was happy when my doctor sent me to an endocrinologist, who sent me for scans. However, as often happens, the tumor didn’t show up on my scan, so the endocrinologist decided to put me on a high dose of Vitamin D because my level (25.5) was just barely in the ‘insufficient’ range, or at the low end of normal (depending on the reference scale). He suggested that he had been able to ‘cure’ ‘mild primary hyperparathyroidism’ using ‘Vitamin D therapy’ before, and that taking high doses of Vitamin D could bring my PTH and calcium levels down to normal — without surgery. Again, thanks to parathyroid.com, I knew the endocrinologist was wrong. (editor’s note: why do doctors think this? Parathyroid glands don’t have vitamin D receptors–they can’t see vitamin D).  At my insistence, I was referred to the closest thing to a parathyroid specialist in my area: a General Surgeon who also did gallbladder surgeries, mastectomies, ‘peri-anal Interventions,’ and hernia surgeries, among others. Nevertheless, I contacted her office, only to learn that the wait time for parathyroid surgery was a year.

My frustration became desperation. I didn’t know what to do, so I emailed the Norman Parathyroid Center in Tampa. I was astonished that Dr. Norman himself emailed me back. He told me that based on my blood work I had classic Primary Hyperparathyroidism, that I needed surgery, and that the wait time at the Norman Parathyroid Center was two to three weeks. By this time I knew that a botched parathyroid surgery could have serious consequences, and that all of the glands needed to be checked during surgery. I knew I wanted to be treated by a parathyroid specialist, not a general surgeon.

    • Don’t be fooled just ‘cause I’m not cancer!
    • Surgery is still the answer.
    • Have ‘em check all four ‘cause there might be another….
    • Here to cause more trouble are my three little brothers!

The Fundraising Drive for my Trip to Tampa. Hard to Believe!   

I have wonderful, amazing people in my life: artists, actors, therapists, musicians, filmmakers, and community activists of various kinds. When I told two of my dear friends what I was going through, they cooked up a crowd-source fundraising campaign to raise the money for me to have my surgery done as soon as possible at the Norman Parathyroid Center by the world’s top parathyroid specialists. In less than 40 hours, the fundraising campaign had raised more than enough money for my surgery, flights, and hotel – thanks to 230 incredible, generous, amazing people. I sent my paperwork to the Norman Parathyroid Center and within a few days the phone rang.  Dr. Norman himself was on the phone. He confirmed what I already knew from reading parathyroid.com: I had a tumor and needed to have it removed.

The surgery was scheduled for 3 weeks from that day, and I decided it was time to get to work on my Parathyroid Punk video. I finished the lyrics and posted a request to Facebook for a punk band to record it for free, as a public service. About ten minutes later, Gab Harpelle, the son of a female film director friend of mine, messaged me back. He is in a punk band called Zex, and a fan of the old-school punk sound I was looking for. I sent him the lyrics and within a couple of weeks Gab sent me the song he’d created with his friend Shawn Descarie, performing as Billy Darts. It had been professionally recorded and mixed down at a place called the Meatlocker by Ian Showalter. Parathyroid Punk was amazing!! The song gave me all kinds of ideas for images I wanted to include in the video, so I listened to the song over and over, worked on the designs for the main puppet, and drew storyboards that would help to illustrate the ideas I wanted to get across.  

 

Parathyroid-Punk-Storyboard

 

I get more help!

Meanwhile, a couple of young filmmaker friends of mine who have made a number of puppet films, Noelle Duddridge and Sarah Huber, joined me for a day of fabricating tumor puppets. We built the main singer, Parathyroid Punk, and his three little brothers. We drew a lot of inspiration from the rogue’s gallery of punk parathyroid tumors, adenomas and enlarged glands on parathyroid.com. If you look closely, you will see that one of the ‘three little brothers’ is actually a small parathyroid gland that has grown a tumor – and the tumor has a face!

Chrystene-Ells-Parathyroid

The author Chrystene Ells working on the head of a Parathyroid Punk character.

 

Parathyroid-Punk-Puppets

Parathyroid Punk puppets taking shape. A lot of work goes into making these high-tech puppets!

 

 

 

 

 

 

 

 

 

Parathyroid-Punk-Brothers

 

Eventually the puppet heads have taken shape. Here you can see two of the “little brothers”. Additional props had to be produced, such as the “flying V” guitar, and Styrofoam bones.

Each of these Punk Parathyroid Glands was inspired by real parathyroid tumors (real parathyroid punks!) removed from patients. I found the ones that I wanted to copy on the page of parathyroid.com that has dozens of photos of parathyroid tumors.

 

 

Parathyroid Punk Green Screen

(L – R) Noelle Duddridge, Chrystene Ells, and Emily Berntson bring Parathyroid Punk alive. in front of a “green screen”.  They watch an off-camera monitor to help choreograph the puppet’s movements.

 I get my Punk Parathyroid gland removed!

Just before I left for Tampa, I did a rough cut of the video. I really wanted to share it with Dr. Norman and the amazing people I had had the pleasure of dealing with at the Norman Parathyroid Center in Tampa. I was so happy that Dr. Norman “got it” and loved the video!

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My Punk Parathyroid that was making me sick! One hour after the operation my PTH was down to 6.9 pg/ml showing I was cured, and that the excess hormone that was making me sick was due to this little punk!

On June 17th, 2014, after ten years of being sick, my surgery took 14 minutes as an outpatient procedure at the Norman Parathyroid Center in Tampa, Florida. My scar is just over an inch long, and the tumor was making 869 pg/ml of parathyroid hormone when it was removed. The next day, I was walking on the beach, collecting shells, and enjoying being able to think, and move without pain, for the first time in years.

Everyone who worked on Parathyroid Punk donated their time and services. It was a labor of love all around, and no one is making any money on the distribution of the video. Parathyroid Punk is a copyright-free PSA, available to any and all to use freely throughout the world, to help spread awareness about this disease. I have received so much great feedback about the video. Some people who are suffering with hyperparathyroidism are sending it to their families and friends to help them understand what they are going through. Medical students are sharing it with their professors and other students. And endocrinologists have shared it with their patients and posted it to their websites.

This video is dedicated to all my friends and to the total strangers who gave so generously to the fundraising campaign for my surgery, to the medical professionals and advocates who are fighting to get hyperparathyroidism recognized and understood, and to all of my parathyroid friends around the world, both diagnosed and undiagnosed. My heart goes out to the many, many undiagnosed people out there who are currently suffering from the progressive effects of this disease. I hope that in its own small way, Parathyroid Punk can help to change the world!

Watch the finished video here, and please share it on Facebook, Twitter, and any other site so we can help people understand that high blood calcium, even just a “little bit high” is dangerous and can make you miserable!

PARATHYROID PUNK

I’m a parathyroid tumor and I live in your neck
I’m a tiny little jerk but I’ll make you a wreck
‘Para’ means ‘close’ to that other famous gland
Don’t confuse me with your thyroid, son, I’ll get out of hand!
Don’t be fooled just ’cause I’m not cancer -
Surgery is still the answer
Have ‘em check all four ’cause there might be another:
Here to cause more trouble are my three little brothers!
 
PTH! Parathyroid Hormone!
PTH! Parathyroid Hormone!
PTH! Parathyroid Hormone!
Stones! Bones! Groans and Moans!
 
I’m a parathyroid tumor and I’ll kill you one day
But before you die I will make your body pay
Robbing the calcium from your skeleton
That’s osteoporosis, your mind’s like gelatin
I’m a parathyroid tumor and I’ll break your bones
Make you feel like sh*t and fill your kidneys with stones
I’m the Hulk of Parathyroids and I’ll make you cry
and if you don’t get rid of me I’ll make you DIE
 
PTH! Parathyroid Hormone!
PTH! Parathyroid Hormone!
PTH! Parathyroid Hormone!
Stones! Bones! Groans and Moans!
 

“GET THE TUMOR OUT OF YOUR NECK THAT IS KILLING YOU!”


‘Parathyroid Punk’ lyrics by Chrystene Ells

Music by Billy Darts
Guitar and drums by Shawn Descarie
Bass and vocals by Gab Harpelle
Written, designed, directed and produced by Chrystene Ells
Cinematography by Berny Hi
Puppets by Chrystene Ells, Noelle Duddridge and Sarah Huber
Puppetry by Emily Berntson, Noelle Duddridge and Chrystene Ells
Post Production by Chrystene Ells and Berny Hi
Credit Sequence by Berny Hi
Thanks to Jill Cohen, Stephen Pocock, Dan Weil, Karena Weil, Raul Viceral, The Saskatchewan Filmpool Cooperative, and Moxie.
Recorded at the Meatlocker by Ian Showalter

“All Ages” font by Kevin Christopher, kcfonts.com

  • Learn more about hyperparathyroidism and watch a very cool animation.
  • See photos of other people’s Punk Parathyroid Glands.
  • Watch video of Dr Norman performing a complete 4-gland parathyroid operation in less than 13 minutes. You can see from this video why Chrystene has one line in the song “Have ‘em check all four ’cause there might be another”. 30% of people have more than one parathyroid punk!
  • Learn more about Chrystene Ells and see more of her amazing work.

 

Parathyroid Surgery for Medicare Patients in the US

Parathyroid Surgery for Medicare Patients in the US

Hyperparathyroidism (parathyroid disease) occurs most commonly at age 61, thus Medicare pays for thousands of parathyroid operations per year. New data shows where Medicare patients go for parathyroid surgery. This graph shows where 100% of all parathyroid operations were performed on Medicare patients in 2012. The data was made public in April, 2014 (link toContinue Reading

Canadian Patients Traveling to Florida for Parathyroid Surgery Continues to Increase.

Canadian Patients Traveling to Florida for Parathyroid Surgery Continues to Increase.

Canadians with hyperparathyroidism claim expertise in parathyroid surgery and long wait times as the reasons for traveling to Tampa for surgery. On April 6, 2014, the Calgary Herald published an article about the dramatic increase in the number of Canadians traveling to Tampa, Florida for their parathyroid surgery. This is a great article and shouldContinue Reading

Intra-Operative PTH Assay: Exposing the Problems with Measuring PTH in the Operating Room.

Intra-Operative PTH Assay: Exposing the Problems with Measuring PTH in the Operating Room.

Measuring parathyroid hormone (PTH) in the operating room has some theoretical benefits, but in real life, the intra-operative PTH assay (io-PTH testing) doesn’t really help and may hurt. Measuring parathyroid hormone in the operating room cannot determine if a patient is cured of hyperparathyroidism. Intra-operative PTH Assay: The theory of measuring PTH in the operatingContinue Reading

Failed Parathyroid Surgery: Yesterday’s Three Unsuccessful Parathyroid Cases.

Failed Parathyroid Surgery: Yesterday’s Three Unsuccessful Parathyroid Cases.

Parathyroid surgery can be tricky which is why all your doctors will tell you “get the most experienced parathyroid surgeon you can” or you can have a failed parathyroid surgery or a bad complication. The fact that we have a business that is exclusively parathyroid surgery is evidence that this is not always a simpleContinue Reading

Vocal Cord Nerve Damage During Parathyroid Surgery is Increased with Nerve Monitoring

Vocal Cord Nerve Damage During Parathyroid Surgery is Increased with Nerve Monitoring

Thyroid and parathyroid surgeons have been told that monitoring vocal cord laryngeal nerves during surgery may decrease the incidence of vocal cord nerve injury, but the data shows vocal cord nerve monitoring dramatically increases nerve damage. Surgeons don’t like hurting their patients. We will do anything, it seems, to prevent injuring our patients while theyContinue Reading

A Doctor With Hyperparathyroidism: How Parathyroid Surgery Changed Me in One Month.

A Doctor With Hyperparathyroidism: How Parathyroid Surgery Changed Me in One Month.

Hyperparathyroidism sneaked up on me. I was feeling tired and old. I’m a family practice doctor so my job is to take care of other people–to make them feel better. Yet I was miserable myself. My name is  Ashok Goyal MD and this is my story. I found myself not enjoying my job like I usedContinue Reading

Is Your Surgeon Cheating During Your Parathyroid Operation?

Is Your Surgeon Cheating During Your Parathyroid Operation?

The internet is full of surgeons who claim to be experts at parathyroid surgery. But are they really doing expert work, or are they cheating and doing a simple operation that any joe-blow surgeon could do? Parathyroid surgery can be very tricky for a number of reasons.  First, there are four parathyroid glands and aContinue Reading

Sexual Dysfunction and Loss of Sexual Desire due to Hyperparathyroidism

Sexual Dysfunction and Loss of Sexual Desire due to Hyperparathyroidism

Sexual dysfunction and loss of sexual desire and interest in sex is common in patients with high blood calcium and hyperparathyroidism.  Both women and men have a nice benefit to their sex lives from parathyroid surgery and cure of the high blood calcium / hyperparathyroidism. We have known for years that people with primary hyperparathyroidismContinue Reading

Diagnosing Hyperparathyroidism: Top 10 Mistakes Doctors Make Diagnosing Parathyroid Problems.

Diagnosing Hyperparathyroidism: Top 10 Mistakes Doctors Make Diagnosing Parathyroid Problems.

Hyperparathyroidism should be easy to diagnose in about 95% of cases. Unfortunately many doctors and endocrinologists don’t have much experience diagnosing parathyroid problems and thus it takes too long and too many tests are performed.  How do we diagnose hyperparathyroidism when many doctors don’t know how? Parathyroid problems (hyperparathyroidism) affect about 1% of all womenContinue Reading

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About Dr. James Norman

Dr. James Norman

James (Jim) Norman, MD, FACS, FACE, is recognized as one of the world's foremost expert on parathyroid disease and hyperparathyroidism and has treated far more parathyroid patients than any other doctor in the world. He is the founder of the Norman Parathyroid Center in Tampa, Florida, the world's leading center for the diagnosis and treatment of hyperparathyroidism. Dr Norman has made numerous contributions to to the understanding of parathyroid disease and is credited with dramatically changing the way parathyroid surgery is performed. He is a fellow of the American College of Surgeons (FACS) and also a Fellow of the American College of Endocrinology (FACE). He is recognized in the top 1% of all surgeons by US News and World Reports in addition to dozens of other awards and Best Surgeon accolades. He has published over 250 peer-reviewed journal articles. Dr Norman and his partners perform more than 2600 parathyroid operations annually on patients from all over the world.

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