Beginning

On June 19, 2008 I was startled awake from a dead sleep. I had experienced a single wave of intense pain that shot into the area of my left testicle. The pain made me retract my legs and take a deep breath. It was so intense I cringed and held the first breath to make sure I didn't wake my lovely wife from her deep sleep.

As I started to calm, a minute or so later I felt the beginning of what turned out to be wave after wave of excruciating pain. I arose from bed and went to another room so as not to make a disturbance. The pain was the most severe I have ever felt (and I've felt plenty having been through many broken bones in sport, been shot and stabbed, had an acl/mcl torn away in my knee that required open surgery. This surgery led to many months of painful recovery and physical therapy during which the incision site became infected with Staph, which itself placed me on 10 weeks of IV antibiotics both as a confined patient in the hospital and then at home.

I'm a past medic by training. I spent 20+ years in emergency medicine rising through the ranks and training levels. I've worked some of the baddest areas in the US, been on 'GO' teams responding to many natural disasters which took me to Puerto Rico, Mexico City, Los Angeles and San Francisco. I've also dealt with plane disasters as well. With this and in my day, I've experienced, (or though I had) some of the deepest and worst pains one could feel. In 1998 I while doing critical cardiac transports I was diagnosed with Rheumatoid Arthritis (RA) which changed me life. Living with RA has been a challenge. The joint pain felt daily is a burden, like an unending rain falling. Most days I describe the pain as tolerable at a 3-4 out of 10 (3-4/10). Other days it leaves me in bed squirming at points, hoping to find that comfortable position. Most times failing. I take OTC NSAIDS (non-steroidal anti-inflammatory) drugs to help with the pain. During the mutli-year diagnostic period they dr's found my labs deviated too much to keep me on any form of steroid. So, I have a firm grasp and understanding of pain, general and now otherwise.

So, back to the beginning. After moving rooms I tried to concentrate to make the pain go away believing it was possibly muscular in nature. I tried changing sitting positions, pain came back. I tried lying down, left side, right side. I tried feet elevated. I tried vagal maneuvers. I tried voiding. I held my breath. Nothing. Standing, nothing.

The pain seemed to be localized to my left testicle. I tried manipulation believing I might have a torsion. During palpation I found I could trigger a wave of pain by manipulating the posterior aspect of the testicle. Didn't want to do that again. The pain, on a scale was slightly under a 9/10. This pain was so bad it reestablished my understanding of pain. It became blinding, focused, unable to think or speak. Excruciating is the best word for it. It became a world in and of itself. One I did not wish to live within for very long. It was knife like. Sometimes seeming to be a large carving knife heated with a blow-torch inserted inside me at my left testicle. At the same time it felt as if someone had grabbed me testicle with a pair of vice grips and wrenched down on the testicle until the most pain could be felt. I immediately went for aspirin. Took a handful and walked around.

The walking appeared to help a bit until I twisted slightly to go around a chair in the dark. I started to crumple to the floor. This was bad. All the time I was trying to diagnose myself. Going down list after list of possible causes and treatments. The area was specific - left testicle radiating to the perineum and around the anorectal area. It also shot down the inner aspect of my L leg approx. 20cm. Sometimes appearing to begin in that spot on my leg and travel upwards. Other times not needing an impetus at all and just hitting me like a baseball bat.At approx 6AM, I got up and got in the shower careful not to hit a position I thought would elicit another wave of pain. Now clean I made my mind up to go to the ER. I thought it was testiculitis or prostatitis (also concerned for the Ca as well.) I told my wife and she let me be. Typically she'll be the nosey body and worm her way in on such things. This time she let me be.

I drove myself the 25 minutes to the ER. Thankfully the streets and highways were clear of heavy traffic so I made the trip to Stony Brook University Hospital relatively quick. They have a great new ER setup that allows patients to be fast-tracked depending on problem. I though didn't meet their criteria for fast-tracking and was placed in the ER.

Told to remove my clothes I got into a far too small gown, leaving my socks on, and waited for the nurse and doctor. The Nurse arrived pretty quick, completed the necessary forms and signatures and within 30 minutes the Dr arrived. He examined me for torsion. Again, I'd found manipulation triggered the problem earlier that morning, and as such I again went into a convulsive wave of pain. He examined my anatomy in detail, including prostate. All came back WNL (within normal limits). He them stated he'd have labs done, take a urine sample, and have a sonogram done. Each time looking at me as if asking for approval.

After having the blood taken and urine sample provided, I was wheeled in the stretcher to radiology. There, within 30 minutes or so, a nice girl in her late 20's came by and placed me into the examination lab next to a color monitor and a pretty cool looking sonogram machine. It said pulsed Doppler on it, other marking I could not make out. She then asked my to remove my white briefs and take two green sterile drapes and place one rolled up under my testes, and the other over my droopy member allowing the scrotum to present unimpinged. She spent the next 1-1/2 hours conducting the tests. I heard the arterial and venous flows on the speaker and caught an occasional glimpse of the screen, though none long enough to make a personal assessment. She finished. Transport came back for me and brought me to the ER. By this time it was 9:30 or so and there I sat for another 1-1/2 hours until the nurse came in and said the radiology report came back with no signs of problems. She further stated that I was released, follow-up with a Urologist and if I experience pain (I'd asked for something very strong in the ER which never arrived) take any OTC pain medicine...Great. What the heck happened. I then asked for a hard copy of the radiology report for my records. The nurse looked slightly aghast, left the room, made a copy, returned gave it to me with a flick and smile 'have a nice day.' Then walked away.

I called my office and wife and told them the outcome so far. I went home to try and rest. What the hell happened to me that morning? The itis and the Ca were still at play. I called the University's Urology Dept and found the Chief of Service and made an appointment with DR. Yefim Sheynkin. 10 days. Ugh.For the next 10 days I layed there at night in agony. I had/have general pain levels of 4-5/10. I needed to sit on a pillow in order to work. I had to get up and move around a bit, which seemed to help slightly, but the pain would return quickly. I was popping pill after pill to try and sedate myself enough to make it subside. It wouldn't. This is how life continues today.

With that 10 days later I presented to the Urologist. I highly recommend him. He's personable (to the extent possible for a doctor), appears concerned and warms more to you when he knows you. He's Chief of dept. and also head professor for the medical school. We went through the list of what happened and when. How does the pain present, what do you do to make it better or worse. He checked me thoroughly inside and out. He initially believed it might be testiculitis or prostatitis. They treat both the same way, a long course of Cipro, and he also had me take a regimen of Motrin daily. See him again in 2 weeks. He also sent me for a abdominal/pelvis CT. The pain remained constant. (The original Doppler sonogram showed a small vericocele and also 2 small 2-3mm cysts on each testicle. Not enough though to be treatable or cause this type of pain response.) The CT scan was a week and a half after I first saw him.

With the new Ct can results in my hand (images only) I went to the doctors office a few blocks away and wanted to give them to his assistant. He wasn't available right away, but he did ask to see me the following Monday, a few days earlier than my original appointment.

When I presented to him the following Monday I came prepared for bear. I'd done a decent amount of research on my own and had a bunch of knowledge I wished to explore with him, but mostly I wanted to know what the Ct report said. Nothing. Everything WNL. Ugh. Pain was still there, as bad as it always was on a daily basis. I hadn't though experienced the episodic significant pain that had come in waves until a few days before. (True though it was fits and starts.) The doctor said to continue the Cipro for the full medication course and see him in a week. He said the Cipro sometimes needed 14 or 30 days in order to show relief. I also continued with the Motrin. In the mean time he wanted me to have another Ct scan this time with oral and IV nuclear contrast imaging. He also asked me to arrange a review with a Neurologist.

A week later I was back in his office, the day before having been through the next Ct scan. Again, nothing. I was also waiting for the appt. with the Neurologist. I was now approaching the 30 days on Cipro with no results and also had the 2 Ct's. With the next visit he stated that my blood work continued to come back negative as well as the urinalysis. Urologically then I was unremarkable. I was out of his service now. He asked, as a professor and because of general interest to keep me informed of progress and see him again in 2 weeks which would be after the full course of Cipro to finish.

The following Tuesday I presented to Dr. Gerber at Stony Brook University Hospital Neurology. I sat with him for the better part of an hour through detailed examination. After which, naked, I sat there while he said he 'was going to consult his brain.' Quizzically he turned in his stool and pulled out a keyboard and up on the wall mounted screen popped Google. He was actually Googling for medical information. After a few minutes and many clicks he whispered 'hmmm.' He Googled again this time in ever increasing intensity until he arrived at a web page which I believe is this, a wikipedia page no less. He further clicked through the attached links and found this. And, finally found this. He then said that I was presenting with a possible Pudendal Nerve Entrapment. Further he stated that he'd need a few days to speak with his electrophysiology dept to have an EMG done and also then need to speak with a neurosurgeon about the efficacy of having an MR Neurography done. His hospital didn't have the technology to do this procedure and he'd need some time researching where a machine that did it was. He also stated he had another patient that needed a similar study in his service that he'd been waiting to recommend for a couple months, but had yet to do so. He said give him a call in a week and he'd speak with the other two services to see where we could go. I asked him about the pain and he recommended a narcotic, which I declined because of previous altered mental status (AMS) issues. So, he prescribed me with Neurontin 300mg t.i.d. and I left, waiting another week.