Dr's - hmmmph

So, I called him back the following Wednesday, left a message. A few hours later he returned the call. He had attempted to speak with both electrophysiology and neurosurgery, but both practitioners were on vacation that week. He then said to me that he would speak with them when they returned, but further he himself was going on vacation the week they came back, so 'call me back in 2 weeks,' and hung up.

I was shocked. While this doctor had done a decent examination then consulted his 'brain' (Google) as he called it, he was becoming less spectacular by the hour. I was having very horrible pain on a daily basis, and now needed to wait another 2 weeks? I was also beginning to notice pain, and point tenderness, near the pubis all the while trying to analyze the pain and determine routes and causes. For the most part the pain localized to the anorectal area, the posterior portion of the left testicle, and then referring (20cm) down the medial aspect of the left leg. Of late, it was coursing down the left side of the penis to the tip. I wasn't experiencing numbness in the penis at all, just the bolts of pain.

In trying to describe the pain, there seemed to be no impetus to it. I've determined that its better in the morning when I wake up. More like a dull throb, or toothache which builds after about 20 minutes. Then, when I get out of bed, the pain begins a very rapid climb to its sustaining level throughout the day - 4-5/10. Voiding (#1 or #2) doesn't make it better or worse. The need to void neither makes it better or worse. Movement in specific direction doesn't change its scope or intensity. Sitting, that's another story. At first, just after the 1st episode, I'd be able to sit for about 3-4 hours before it became too uncomfortable. As time progressed, that ability declined to a point I'm at now, about an hour and a half. It feels as though there's a letter opener that's been heated by a blow torch being inserted directly behind my testicle and rotated inside me. Then if I don't walk around a bit, there's a blow-torch feeling in the perineum. Occasionally I'll also sense a ripping or tearing feeling in and around the testes. This feeling is not the everyday walking around pain, and only presents when I have a severe episode. Sometimes the testes are very sore and tender. Other times, not. I'm also getting bouts of nausea, which tends to pass quite quickly (probably from the pain.) Of late, I've also noticed the pain beginning to involve what I perceive as the right testicle as well. (Oh joy.) Also, walking doesn't appear to make the pain more severe. I can tolerate the tooth-ache like pain during this type of activity. Running or an aggressive walk is totally out of the question and will certainly bring an episode of high intensity pain. Also, I don't typically find relief from a change of leg position or by 'siding' of the body (moving to left or right side.) I tend to feel 'better' if that word can be used, by reclining more and more. So, I typically move from couch to over-stuffed chair, to bed to straight-back chair throughout the day. This has obviously compromised my work life as well. The pain typically becoming so severe that it interrupts thought processes and cause a jerk of the body making standard walking around, at times, a liability.

I was now dejected. Wait another 2 weeks to try and get an answer or at least a direction to a cure. This sucks. I called to the office and spoke with my wife, and then my father. Everyone I spoke with was dumbfounded. With that, my father recommended that we call the Hospital for Special Surgery in Manhattan. In 1990 I damaged my left leg knee ligaments and needed surgery. Through a family friend I became a patient at HSS through Dr. Steve O'Brien. He was their head orthopedic sports surgeon at the time (and has since moved on to his own thriving practice serving major league sports.) In 1998 My sister's 1st daughter had an issue with a growth on a finger. The doctors on Long Island were okay, but she wanted the best. With that they called Steve O'Brien (link to Trauma article) up and asked if he knew of a good doctor to handle such issues. Startlingly enough, he said a new doctor had just arrived from the south. He's a hand expert and was just setting up shop. My sister's daughter became his first patient in NY. His name is Hotchkiss and is one of the best hand doctors in the world. He's very highly recommended to anyone needing detailed care. With this my sister called Hotchkiss up and asked if there was a good doctor in the hospital that might handle PNE's. He immediately said 'Feinberg' or 'Dr. Lee' (of Beth Isreal Hospital.) Both had excellent reputations and were peer reviewed.

I immediately contacted Dr. Feinberg, who had an opening the next day. Dr. Feinberg is a Physiatrist who typically handles the primary care of patients and then coordinates the remaining treatments. I went and saw him for an extended examination (in the nude. I've since lost any semblance of modesty in my life.) After his extensive examination he stated that it could be a PNE (Pudendal Nerve Entrapment), a ruptured or herniated disk, sciatica, or reflections/complications from Rheumatoid Arthritis. He offered two next steps; first to have an MRI done on property. He stated HSS's MRI department was second to none. Next, upon receiving the results, get in to see Dr. Richman at HSS. He's a Pain management specialist who could perform nerve blocks to temper or alleviate the pain for the time being until a diagnosis could be made. He ordered a sacral block and a pudendal block to be instituted. With that he also said as each test was completed, he'd have a conference call with me involved to discuss next steps. Wow, this was an impressive doctor. Involving his patients in the discussion with other doctors. He seemed to be a take charge doctor. No wonder he's considered very good.

I then went and immediately called HSS Radiology MRI and made an appointment for later that day. Filled out the forms and waited the few hours in mid-Manhattan until my scheduled time. During this time I made an appointment with Dr. Richman for a month (yes, month) later, but asked to be in a standby-list in case of cancellation. Bad news, the machine went on the fritz, I had to come back first thing the following morning.

When I came back they were using the closed MRI machine at the time so I'd be placed in the open MRI. Today I was by myself, where the day earlier my wife was with me. Driving the 2-1/2 hours (in traffic) into the city for an 8:30 appt. wasn't so bad, I was though by myself and the sitting from the previous day seemed to have a cumulative effect, even after having rested the night before. The MRI was 2 hours long. I was determined to remain still and not move. I wanted these tests to come out perfect. 2 Hours later I got up, unsteadily, and made my way out to the changing room, grabbed my clothes from the lockers and left.

The following Tuesday I had a conversation with Dr. Feinberg. He said the MRI yielded nothing out of the ordinary, but good news was that my Rheuma Arth hadn't affected the pelvic or hip joints. He asked when I was seeing Dr. Richman and he said, 'ugh.' I hung up the phone with him. As soon as I did Dr. Richman's office called, they had a cancellation this Thursday. (Yeah!!) I was relieved.

The next day I spent heavily researching. I found the following web sites and documents:
Dr. Renney, Houston, Tx.
Dr. Filler, Santa Monica, Ca
Dr. Grossman, NYU Medical Center
Aleksandar Beric M.D

Then the following publications:
Worlds Most Powerful MRI
EMG - Electromyography
Diagnosis of Pudendal Nerve Entrapment with ascertation to MR Neurography
Chronic Pelvic Pain as it relates to PNE and/or Prostatitis
Pudendal Neuopathy
Taking the Pain out of Pudendal Neuropathy
The Pudendal Nerve
Pudendal Help website - with attribution to Professor Roger Robert - France