Friday February 1, 2019
writing letter to Keith Kowal about Fascia-Related Disorders

Dear Keith,
May I tell you about my mom and mTrP?

My mom had pain with her knees when I was in college (1990-1995). I remember in college, I met my sister and my mom at Panera Bread in Des Moines, after my mom’s orthopedic appt. I came up from Simpson College in Indianola, Iowa to have lunch with them.

Panera was one of our favorite places to go for lunch and it was nice to meet up with them. My mom told me, the orthopedist said both knees would need replacements later in her life. At the time, she was too young to have them replaced. If she had surgery then, they may need to be replaced again at a later date. She would have to suffer through the pain of walking and exercise, take pain medication. He told her to come back to see him in 10 years. My mom was in her mid 50s.

A few years later, in 1996, Dr. Charles scoped her left knee. My mom was 56 years old.

Then two years later, in 1998 at 58, Dr. Charles replaced her right hip. Oh boy! Was that a mess!

My sister, at the time, worked for Grinnell General Hospital as a Physician Assistant. Allison was already upset as my mom had woken up during the replacement procedure to see Dr Charles standing on the operating table with a malet in his hand. He was hammering in her hip replacement. My mother told my sister about the mishap – lack of anesthesia – so Allison took the concern up to the head of the hospital.

There was a larger issue to address as well. Upon waking from surgery, my mom had a tremendous amount of pain. She is allergic to morphine, so another pain killer was administered per doctor’s orders. Per doctor’s orders, the pain medication was limited. My mother awoke after a short nap screaming in agony. Dr. Charles did not “believe” in pain killers, the nurses could not help my mother.

Grinnell General Hospital due to this situation had a policy shift regarding patients and administration of pain killers. Way to go sis! Allison won a victory for future patients.

To this day, there is a deep scar along my mom’s right IT-band. There is a series of staple scars perpendicular to a deep line from the outer right knee to the upper right hip. And still today, my mom swears she was put back together wrong.

My mom did not give up on surgeons. In 2000, the podiatrist corrected both her left and right hammer toes. In 2003, her right rotator cuff had surgery due to a fall 20 years earlier which damaged the ball of the humerus; therefore, the deterioration of the joint gave her pain, said the orthopedist. The orthopedist also told my mom the left shoulder needed surgery too, but the right shoulder was worse, so we take the right one first (btw the left never had surgery after the right one was ‘fixed’).

In 2007, my mom had her left knee replaced by a nice Dutch man, Dr. VandeLunde.

In 2009, the right knee especially hurt. Because my mom had developed clinical depression and anxiety, one way she treated the oppressive symptoms was to exercise by walking. Unfortunately walking, even around the block had become extremely painful. We got a brace for her leg from Chladek Orthotic and Prosthetics in Des Moines, Iowa. This helped her hyper valgus right knee track over the foot better; thereby, not as much pain. We had foot orthotics made as well. And all seemed better, not without pain, but much better.

Her doctor prescribed Physical Therapy (PT). So, we went to a former kindergarten student of my mother’s (my mom taught for 32 years). Kim was a PT at Grinnell General Hospital. My mom was not too impressed with Kim’s work, myofascial release. My mom said, “She just puts her hands on me and waits. It is not helping.” So after a few sessions, we found Stacey. Stacey had her own PT clinic not associated with the hospital.

Stacey assured me that TrPs did not exist. This was confusing to me because I was taking classes with Doug Nelson’s NMT Midwest (Neuromuscular Therapy). His classes centered around Trigger Point research and the work of Janet Travell, M.D and David Simons, M.D.

Stacey worked with my mom manually a few times, then they did strengthening exercises. From then on, it was machine based strengthening. Mom liked it. She had control over her body and she could exercise as well. Win-Win. She wanted to get stronger so she did not have pain, so the Senior Bus (no longer drove after the 2008 car accident) dropped her off, then picked her up an hour later. Stacey was strictly hands off, my mom paid a weekly fee to come to her clinic to exercise. My mom was 69 years old.

One can see from Susan’s partial surgery list1, my mother eventually had the right knee replaced at 72 years old in 2012, by Dr. Matthes at Mercy in West Des Moines, Iowa despite all the strengthening.

High frustration, some anger, irritation and curiosity cause me to ask, questions? Could the outcome have been different for my mom all those years ago in the mid 1990s????

Did she have to take Celebrex and Vioxx all those years for pain?
Did taking the pain medication lead to the sleeping pill dependency?
Or did lack of sleep lead to more pain?
Did the Celebrex and Vioxx contribute to her heart disease? Placement of 2 stents helped fix Coronary Artery Disease in March 2005. Then, followed a roller coaster of 10 years of suicidal depressive emotions and anxiety. Yuck!

First of all, the Orthopedic Surgeon(s) should have been familiar with Janet Travell and David Simons work, right? The 1st edition of Volume 1 was published in 1982. Should one of the surgeons my mother saw know, that, muscle trigger points can cause pain and dysfunction? That there was a concept of Point A can cause pain at Point B and Z, even if the points cross a joint or seems to be unrelated? See picture P 399 Chapter 21, Gastrocnemius Muscle, “Myofascial Pain and Dysfunction: The Trigger Point Manual. Vol 2.” (2)

The title of the book is: “Myofascial Pain and Dysfunction: The Trigger Point Manual. Vol 1 and Vol 2.” And Dr. Travell was a White House doctor to President John F. Kennedy. President Kennedy suffered from a lot of pain. (3)

Oh. But wait, there is Stacey. A physical therapist in 2009. “Trigger Points do not exist.” UGH!!!

What if we follow some research written about trigger points by Roland U Gautschi in 2012. Frautschi is a Physical Therapist from Switzerland.
(See YouTube in Swiss Pectoralis Major and Subscapularis

Exercise can help someone, really? Someone especially with fibromyalgia or chronic fatigue or ME, if ATP depletes and an energy crisis develops. Would it not be true: exercise causes more of an energy crisis?

Mr. Gautschi writes Chapter 5.7 about myofascial trigger points (mTrP) of the book, “Fascia. The Tensional Network of the Human Body.” Page 234 states, “The pathophysiological changes are like individual mosaic stones that fit together to form a picture. The factors which combine in the formation of mTrPs are summarized in the “energy crisis model” (Travell & Simons 1999, Mense et al. 2001).“ See photo of p 234 & 235 for more. (4)

I do not claim to have answers, but I see a pattern in my mother’s health crisis. One mosaic stone fits into many mosaic stones to form a picture.

It is time to ask questions, so others do not end up at the waterfall’s edge, clinging to a slippery wet rock. Instead of discussions on who is right, who is wrong, can we please find answers?

This requires courage: to step out of line, to be ridiculed, to be silenced. It also requires searching for lost keys, not under the light where one can see, but in the darkness where they are actually lying / hiding / living.

Thank you for reading,
Allissa from Iowa, Living in Sweden

1) Susan’s partial surgery list October 1996 – June 2012

10-96 left knee arthroscopy Dr. Charles Grinnell, IA
4-97 umbical herina repair Dr. Coster Grinnell, IA
1-98 heart cath. Dr. Laughrun Des Moines, IA
2-98 angioplasty Dr.McGaughey Des Moines, IA
3-98 right hip replacement Dr. Charles Grinnell, IA
6-98 colonoscopy- biopsy Dr. Coster Grinnell, IA
6-98 EGD Dr. Coster Grinnell, IA
8-98 hiatel hernia repair Dr. Coster Grinnell, IA
8-98 right carotid endernecetony Dr. Coster Grinnell, IA
3-00 hammer toes on both feet Dr. Pendarvis Grinnell, IA
straightened-toenails removed on 4th and 5th toes of each foot and bone spur under 5th toe on rt. foot removed
8-01 colonoscopy & EGD/duodenal Dr. Coster Grinnell, IA and pyloric ulcer found
12-01 EGD Dr. Coster Grinnell, IA
6-24-03 right shoulder rotator cuff repair Dr. Davick Des Moines, IA
1-24-05 Bilateral inguinal hernia repair Dr. Coster Grinnell, IA mesh needed/veins removed from left leg WARNING: Dramatic bld pressure drop at end of procedure, in ICU afterwards.
3-30-05 Angioplasty rt. Coronary Dr. McGaughey Des Moines, IA 95%&50% blockage –2 stints medicated stints placed in artery/70% descending lateral blockage, left alone
02-07 MRI, brain Donna Sullivan Grinnell, IA
08-07 Electric Shock Therapy Dr. Preston Iowa Lutheran, Des Moines IA
09-07 MRI, brain Donna Sullivan Grinnell, IA
12-07 CT scan – abdominal Donna Sullivan Grinnell, IA
12-07 Chemically Induced Stress Test Dr. McGaughey Des Moines, IA
2-11-07 L Knee Replacement Dr. VandeLunde GRMC hospital, Grinnell, IA
04/28/08 Auto Accident Dr. Sidwell / Swagel Des Moines, IA
5-20-08 CT scan – brain Dr. Carlstrom Des Moines, IA
08-08 Electric Shock Therapy Dr. Preston Iowa Lutheran, Des Moines IA
3/5/09 Diagnosed with low pressure glaucoma Dr. S.J.Kaufman Florida
3/10/09 1st treatment – laser surgery right eye
3/12/09 2nd treatment – laser surgery left eye
5/17/09 ICU, GMRC Dr. Jerry Wehr Grinnell, IA
06-07/09 to Jan 2010 ECT treatment Dr. Mark Preston IA Lutheran Hospital
10 / 12 Umbilical Hernia, outpatient Dr. Coster Grinnell, IA
06/04/12 R knee replacement Dr. Matthes Mercy West Lakes

2 Picture page 399 Chapter 21, Gastrocnemius Muscle, “Myofascial Pain and Dysfunction: The Trigger Point Manual. Vol 2.”

3On the day she first met and hospitalized JFK in May 24, 1955…. Dr. Travell made sure that hardly a day went by without JFK doing a little rocking. She also highly encouraged him to swim.

Physical Rehabilitation – Dr. Travell was a marvel at physical rehabilitation measures. She had a keen interest in how shoes, chairs, and braces put stress on back muscles.31 She found that JFK had a left leg about an inch shorter than his right. As a result she made him a heel lift to keep him balanced. She designed special chairs with a writing table attached so he could sit and write without back strain. JFK used a variety of back braces and corsets, which Dr. Travell designed.

Most pain practitioners today use a variety of measures that mimic what a rocking chair or swim can do. The idea is to keep lymph draining and excess electricity moving to reduce pain and promote healing. Included in these measures are massage, vibration, trampoline, walking, aquatic exercises, copper bracelets, and magnets.”

“John F. Kennedy’s Pain Story: From Autoimmune Disease To Centralized Pain” By Forest Tennant, MD, DrPH,4

See photo of p 234 & 235 for more. Roland U Gautschi writes Chapter 5.7 about myofascial trigger points (mTrP) of the book, “Fascia: The Tensional Network of the Human Body.”