I have written this book about SAM, an avid bicyclist and racer, whose cycling career was abruptly terminated by Pudendal Neuralgia and his life uprooted. New cycling related problems soon developed, including interstitial cystitis and severe low back pain. I discuss in the book many details relating to SAM's diagnosis, treatment and recovery from extremely serious injury over a SIX-YEAR timeframe. SAM's recovery turned out better than I ever thought possible. Read SAM's story to check out the details including a very effective diet and exercise program and another which has completely eliminated low back pain.

The True Story of Sam: Some Things All Bicyclists Should Know

By Samuel E. Shull

AuthorHouse

Copyright © 2012 Samuel E. Shull
All right reserved.
ISBN: 978-1-4772-1640-8

Contents

Dedication................................................................................................iiiAcknowledgment............................................................................................vForward...................................................................................................viiPreface...................................................................................................ixContents..................................................................................................xi1 About Sam...............................................................................................12 Why Active Bicyclists and Many Others Should Have Pudendal Nerve Awareness..............................33 Termination of Bicycling Career at Age 70...............................................................94 Doctor's Diagnosis and Treatment - A Six-year Time Frame................................................135 Interstitial Cystitis — The First New Problem — Diagnosis and Treatment.....................256 Severe Low Back Pain — The Second New Problem — Diagnosis and Recovery......................297 A Simple Golf Swing Which is Easy on the Back...........................................................338 Why I Went to a Salmon Rich Diet........................................................................359 Lessons Learned About the Use of Hyaluronic Acid........................................................3710 Some Thoughts for Cyclists Wishing to Protect Butts and Body...........................................4111 Some Concluding Thoughts and Lessons Learned...........................................................43Bibliography..............................................................................................49

Chapter One

About Sam

I was born in Lancaster, PA. In my youth I spent many, many hours biking the roads in rural Lancaster County. In the late 1960s I moved with my wife and family to the Williamsport, PA area where I discovered the thrill of bicycle racing. I developed a deep passion for the sport. I was introduced to the sport of racing by my son Richard, who ultimately raced with the cycling team at Cornell University in Ithaca, NY. My first real experience training with Richard in the mountains surrounding Williamsport was not a good one. I quickly "pooped out" and needed a rope tow by Richard back to our transport vehicle. I quickly learned, as a result of this event, that excellent conditioning is a prerequisite to successful bicycle racing.

For about thirty years I competed in many racing events. Such included local area races, state and national United States Cycling Federation events, state and national Senior Olympics (now called National Senior Games) and team triathlons. I always finished near the top of the competition field and never lost my passion for training or racing.

I believe my greatest cycling accomplishment was winning a 20-kilometer time trial during the 1993 National Senior Games in Baton Rouge, LA. Competition was with 65 competitors in the 55 to 60 age group from the United States, Mexico and Canada. I continued to actively pursue racing until 2005, when at the age of 70 I experienced severe pain, first in the buttocks and then later in the lower back. I describe the approach to dealing with these ailments in subsequent sections as well as my continuing motivation to set new goals for self-improvement.

Chapter Two

Why Active Bicyclists and Many Others Should Have Pudendal Nerve Awareness

I am certain that 99 plus percent of you have never heard of the pudendal nerve. Neither have a very high percentage of those in the medical profession and those who have know little about it.

The pudendal nerve originates in the pelvic region. There are three branches associated with the nerve: a rectal branch, perineal branch, and clitoral/penile branch (female/male). The nerve is responsible for orgasm, urination and defecation. Its pathway may be tortuous among ligaments, muscles and other body structures, which if altered may damage the nerve. The pain associated with such damage can be horrendous. Individuals, particularly those who have no understanding of the problem and have no idea who to contact for help or how to treat it, have become suicidal. Recognizing the symptoms of potential nerve problems and taking prompt action is very important. Once the damage reaches a certain point, it may become irreversible. If nerve entrapment occurs and invasive surgery is required, chances for a "good recovery" may be remote.

It is important, but true, that the mainstream medical profession has little knowledge about pudendal neuralgia (PN). Such is defined by Taber's Cyclopedic Medical Dictionary1 as pain occurring along the course of the nerve. It may be caused by pressure on nerve trunks, nutritional deficiencies, toxins or inflammation. A major symptom is pain when sitting. Frequently there are urinary, rectal or sexual problems. Individuals prone to pudendal neuralgia in addition to cyclists may be those who had chronic constipation, prior pelvic surgery, frequent infections, a hard fall, difficult childbirth or actual entrapment, each of which could remodel the nerve.

The cyclist can be particularly vulnerable to pudendal neuralgia (PN). Prolonged sitting, often with poorly padded cycling shorts on hard, narrow poorly designed and positioned saddles, coupled with repetitive movement and hard thrusting of the legs may seriously compromise the health of the nerve. In some circles, pudendal neuralgia is referred to as cyclists' syndrome. Men and women have common symptoms for pudendal neuralgia. It does not seem to significantly impact one sex more than the other. It is not age related.

The prevalence of pudendal neuralgia in this country appears to be unknown. Very frequently pudendal nerve problems are misdiagnosed as chronic non-bacterial prostatitis (five times for me by different doctors) or some other problem such as interstitial cystitis, which causes pain in the pelvic area. One problem is that much understanding of pudendal nerve issues is so recent that in many cases they have gone misdiagnosed or undiagnosed for years.

I have developed pudendal neuralgia as described above and in several instances experienced the horrendous pain mentioned. In Chapters 3 and 4 I recount some of the events that terminated my bicycling career along with the doctor's assessment of my condition and prescribed treatment. However, before concluding this chapter, I want to share with you, as an addendum to this chapter, some comments from my friend Kris in Belgium. He has given me permission to include his story in the book. Kris's condition and experience is similar but not identical to mine. In his case nerve damage has progressed to the point of actual entrapment (PNE). His story helps illustrate what damage to the nerve can do to one's life.

ADDENDUM: Kris' Story

I am a 47-year-old male, I work in IT involving sitting all day long, and in my free time I was a avid cyclist and runner. I often ran more than 50 km a week and cycled 250 km in one week. Everybody should say ..you are very healthy . right ?? I remember the first time I felt 'it' was almost 7 years ago in the beginning of October 2004. I still remember the date as the feeling has never left me since then. I first felt it when getting up from a normal (hard) chair and also a few hours after another bike session. It was a strange feeling under my left buttock. A feeling I never had, .. a stabbing painful thing, cold and warm sensations. I found out, and the onset was very sudden, that I couldn't sit anymore for any time like + 15 minutes. Strange as I never had any problem at that location. The first days I thought it was a minor issue and tried to keep on cycling, but after a few miles I found out that the pain was just too bad to continue. From then on I stopped cycling completely. I also found out soon enough that I couldn't sit on a normal chair anymore, and had problems sitting in my car, So the long search (almost 3 years) began to find out what exactly was wrong. I first went to a sport doctor who operated on me for bursitis and did a hamstring release, after a lot of steroid injections. Of course the surgery didn't help as I already expected, because the top of the hamstring is about 5 cm from the place where my pain is situated. Then I tried nerve blocks which had a very temporary effect. Also heating (Rhizomy) the nerve didn't have any real result for my pain. I also went for physical therapy for almost a year but the result was ... I couldn't sit!! I then found this website and did some investigations myself. I collected success and failure statistics and found out that the last option, PN decompression surgery, was risky. Especially for me, because although I couldn't sit, it was the 'only' problem I have.

If I read this now it sounds like it wasn't so bad but it was! The pain when I sat down was so big I couldn't concentrate on my work anymore. Working became impossible and a real torture. However, most PI members have more issues and I found out were worse than I was , even if I couldn't imagine then how that would be possible as by this time I was very, very frustrated with it. As time moved on I learned that although sitting was making my pain worse over the day, it didn't make my overall pain worse either! So how strange it may sound, I became less stressed with it knowing just this. I went to Dr De Bischop in France and he also thought I had PNE. I also went to another doctor, Dr Beco in Belgium, and he confirmed that I had PNE, he recommended surgery but I thought the risk of getting worse by decompression surgery was too big for me at that time. I found out that although there are people who did get better by this surgery, some got worse. And of course the more things you are still able to, the more you have to lose I thought. Doctor Beco said to me that it was best not to sit for a long time after surgery anyway, so this didn't sound as a good way out to solve my problems anyway because of my occupation. I then found out that neuro-stimulation is another option. I also found out that this doctor was radically against release surgery so it confused me even more. I then saw Dr JP Van Buyten in Belgium and I opted for the option of neuro-stimulation, because if this doesn't work the doctors could undo it. In the meantime I kept on searching for a solution to sit at work, which was my biggest worry. I was fine when I didn't have to sit, like on every weekend. But in a normal life, most days I was shattered at 11 o'clock in the morning, because I had to work. While being on the waiting list for neuro-stimulation, I discovered that driving in a camper van was something I could do for a longer time (2 hours) without too much pain. After sitting in that for a few days without sitting on something else and of course limiting the sitting time altogether I felt usually much better. First I thought it was because of less stress or being in another environment, or so because typically the pain subsided over at least a week and a worse seat doesn't bring more pain instantly. I had tried about 15 different chairs at the office, I even tried standing for the whole day, lying down etc. I have tried Lyrica. With the pills I could sit a little longer, but I had to take so much of them that I couldn't concentrate because of the side effects of the medicine. So I investigated this car seat very carefully and found out that the shape of the top of the chair was the most important. The top was firm enough to support my weight, without leaving any pressure in the middle, which is where my pain is. A racecar chair that is a bit too small is the best description. So I bought some extra car chairs just like that and with them I built a few chairs for the office, at home and I even made them a bit better by removing some material from the middle and making the sides firmer. By the time it was my turn to try the neuro-stimulation I postponed it for 3 months and again and then cancelled it altogether. This was because I then could sit for 3 or 4 hours in a row without too much pain. Because evolution is so slow and it was a wavelike pain anyway, it took a lot of time before you could even say for sure something was happening. I can sit now for almost a full day, without too much pain. Sure I can feel it at the end of the day but it is milder than it ever was. Sitting on a 'normal' chair for an hour or so gives back the pain like before. If I stay careful on the other hand I feel that my tense and painful muscles relax as time goes on, and that alone makes the pain less. It is then less worse if I have to sit for social events and places where I cannot control the 'sitting gear' but honestly, I still try to avoid as much sitting on 'other chairs' as I possibly can. I have the feeling that over the past 2 years I am beginning to get better, very very slooowwly. I once had a pain therapist that told me that the problem would settle if I am just patient enough. When I asked him how long that would be, he responded ... "about 10 years, because in the end your nerve will give up and not grow where the damage is." I was frustrated with this answer at the time, but now I think, that this guy could have been right. So, I think for my problem I made the best choice by not having the decompression surgery. I'm absolutely sure I got it from cycling so I would say to others ... use those padded cycling shorts before you get it, (I never did ), get a softer seat if any exists BEFORE you feel any pain ..And ....Don't overdo anything. Now I ride a recumbant bike which I can use for hours as there is no pressure on my buttocks. I use a special car (TWIKE) as most cars still bring me pain. I realize that my case differs from what many people have to endure but I also think that there is a risk of jumping into serious surgery too soon. My advice would be If there is ANY chance of getting your life back without surgery, try that first, as the surgery is certainly no picnic, and certainly also something that takes a lot of time. Kris Reference: Health Organization for Pudendal Education [http://www.pudendalhope.info/node/70]. Thank you, Kris.

Chapter Three

Termination of Bicycling Career at Age 70

About five years ago I was having severe pain and burning in the buttocks. I could not even sit down in the car for a ten-minute drive to the grocery store. My wife and I had been searching unsuccessfully for several months for someone who could diagnose and treat the problem which was continuing to worsen. Finally I asked my wife to drive me 2 ½ hours to see a urologist affiliated with the University of Michigan, whom I had seen previously. His prior diagnosis was chronic non-bacterial prostatitis. He said I should go home and take two Alleve every day. I thought perhaps he could help with the pain and burning in my rear end which we never had discussed previously. He said he could not. He did suggest that I acquire and review a copy of the book A Headache in the Pelvis, by David Wise, Ph.D. and Rodney Anderson, M.D. I did so and found that the book contained two paragraphs on Pudendal Nerve Entrapment (PNE). Two sentences in those two paragraphs struck me like a bolt of lightning. "Patients with this syndrome typically have considerable pain while sitting that is completely removed when standing. It is also considerably relieved by sitting on a toilet seat." I jumped out of my chair, telling my wife that the pudendal nerve absolutely must be the cause of my problem. She agreed.

I immediately began my search to find individuals who were knowledgeable about treatment of the pudendal nerve, but discovered that there was only a very small group of such people in the United States. I was looking for a doctor who would take a very conservative or self-care approach to treatment, if such were possible. Fortunately I was able to find a contact who provided me with a strong recommendation. My contact suggested that I reach Stanley J. Antolak, Jr., M.D. in Minnesota. The contact seemed confident that he could help me and do so in a timely fashion. I immediately set up an appointment with Dr. Antolak, but found that he could not see me for six weeks. In the meantime, the pain became so bad that my wife had to take me to the emergency department of the local hospital. They put me on morphine for pain control. When I told them that I was absolutely certain my problem related to the pudendal nerve, they put me on medication to control nerve pain. That worked and I was able to lead a reasonably normal life until I was able to see Dr. Antolak.

I want to jump ahead and tell the reader about some highlights regarding subjects which are detailed in subsequent chapters. A primary objective in writing this book is to point out to the reader that there may be hope and treatment for pelvic pain for which no definitive cause has been established. Such could relate to the pudendal nerve, particularly if the pain occurs in the buttocks when sitting. I can tell the reader that for pudendal neuralgia cases such as mine, rapid progress with simple treatment can occur during the first year and such can be effectively measured.

Within only a year or two after receiving a confirming PN diagnosis, I received a positive confirmation of interstitial cystitis (IC). New problems which developed with the lower back became so painful that I had trouble bending over to pick up the golf club and ball. Often I could not walk more than a mile without the right knee aching.

Recovery from all the above ailments has been remarkably positive. Details may be found in subsequent chapters. Unfortunately, however, my cycling career must be officially considered terminated at age 70.

Chapter Four

Doctor's Diagnosis and Treatment - A Six-year Time Frame

About six years ago Dr. Antolak informed me that I had pudendal neuralgia (PN). I have a serious problem of pain consisting mainly of rectal burning but also distinct and bothersome suprapubic pressure. I had aggravated the nerve by excessive exercise activities, most notably cycling, over the years. They could not determine the extent or permanence of the damage. No evidence of nerve entrapment (PNE) was found. A Pudendal Nerve Motor Latency Test was normal. Some quantitative testing helped confirm the pudendal neuropathy. Pudendal neuropathy is any disease relating to the pudendal nerve or one of its branches. (The terms pudendal neuralgia and pudendal neuropathy are used interchangeably by many.) I had distinct abnormalities at several sites in the pudendal nerve distribution.

(Continues...)

Excerpted from The True Story of Sam: Some Things All Bicyclists Should Knowby Samuel E. Shull Copyright © 2012 by Samuel E. Shull. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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