cont'd....

from: beyondbasicsphysicaltherapy
Hi.You could try
Dr. David Kaufman - urologist
Dr. SUbash Jain - pain managment
Dr. Kenneth Chapman - physiatrist
If you have any more questions, email us :)
Take care,
Nazneen Vasi.

So, we drove. My wife was incensed. I turned and asked her to immediately call the Dr. I had researched earlier in the week by this nice Phy Ther. place. They had so readily accommodated my request for information and references. I could only remember the Dr.'s last name and that he was located on 72nd Street in Manhattan. Quick Blackberry search and he popped up. http://www.nycpain.com/. The wife made the call as I drove past LaGuardia Airport. They set the appointment for the following Thursday 11:30 AM.

During the next week I copied and packaged all of my medical reports, test results, scan images into a few envelopes. Kinda like a grab and go set of information I could rely on, in short notice. I was now tossing back and forth on what to do about Houston. Dr. Renney's office was getting it together. We were exchanging insurance info, I was speaking with schedulers, sending records out to them, etc. In the back of my mind I continued to think about the ramifications of having nerve blocks done so close together. What if the first nerve block, just a week ahead of the trip to Houston began to work. Do I still go to Houston? I let things play themselves out. If I needed to cancel Houston, for any reason, I was only out $100 in cancellation charges. I could use my now purchased airline tickets to Houston at some other time. The hotel and car were easy to cancel last minute.

Thursday arrived. Wifey and I hopped in the borrowed small car (basically anything is smaller than Ford's largest vehicle) and were off to see the Dr. We arrived a bit early. I got the placement of the address wrong in my head and we ended up parking a few extra blocks away. The brisk walk felt good though, even on a rainy day. Now in the office we found it very nice, small in relation to most of the other hospital related Dr.'s but very accommodating. We sat there and at 11:50 the Dr said good by to an earlier patient and saw me in to his office.

Dr. Jain appears to be well regarded. Plaques surround his office pronouncing him one of NY's best Dr's by New York Magazine and also US News' America's Top Doctor's (same media service though.) He's highly diploma'd and Board Certified (as every doctor should be.) His birthplace is India. He speaks very well in a moderate and extremely calm and assuring Indian accent. He's quite well mannered and very professional. He's got a HUGE LCD monitor on his desk as well as a multitude of reference material, PDR, medical encyclopedia, and my very favorite desktop knickknack, NEJoM (current edition, thankyouverymuch.)

The Dr. is very quiet and unassuming. He's laid back but direct. He's open to dialogue and discussion, as well as lengthy explanation for the many questions a normal patient might have. I don't consider myself a normal patient (having a medical background) and he entertained even my much more in-depth and lengthy suppositions.

Having sat down he opened the floor to me. He asked what brought me to him and how could he help. I started by explaining that I'd take a direct approach to explaining things, begin at the sudden onset on 6/19/08 and take him to the present day. When finished in present day, I'd take as far back as 1989 when I had knee surgery and then into the late 90's when I was diagnosed with RA. About 15 minutes into my explanation he begins making the clicking sound one makes when poohpoohing something. Almost as if to confirm a sadness. He also began shaking his head slightly from side to side. I just passed that off and continued on not letting it interrupt my unusually clear thought process (now being on Neurontin.) When I finished, about 30 minutes later, he began questioning me. The questioning lasted for about 15 minutes. When he was satisfied with the answers he was getting (he attacked each supposition of his, and my associated response, from many different directions, as if playing a CSI role on TV trying to trip up a perp.) Finally he said, any questions so far? I said, "no". "Okay then, lets go examine you."

We moved to his examination room. He asked that I lay down on the short exam table (covered with the dreaded tissue paper on a roll) and asked that I disrobe as well. He began his check of me. Extremely thorough. B/P, Pulse, eyes, nose, ears, neurologics, masses, lumps, abdominal etc etc. After 15 minutes of this "your very healthy for a large man," thanks. He then had me roll onto my side and took the tip of his thumb and a great deal of body effort and pressed deeply into my left butt cheek. He held it there for about a minute and then released. The pain came shooting back. I nearly went through the ceiling. He asked if the pain was the same that I typically had, or if it was different. It was the same, at least as far as I could tell in the throws of extreme discomfort. "Ahh, such as what I thought."

I dressed and hobbled through his waiting room back to his office, grabbing my wife in the midst. "I'm Dr. Jain" addressing my wife, "I'm here to help." We sat down and began the discussion. Earlier in his office, a few minutes in to my diatribe, the doctor began swaying his head from side to side and making saddened sounds. He explained that his initial impression appears to be accurate. He believes my pain is related to the genitofemoral nerve, instead of the Pudendal Nerve. I cross questioned him stating that I had all the hallmarks of PN issues especially since I had a heavy biking history in the 90's. He agreed with me but, holding up one hand, "with the exception of the pain referring to the medial aspect of the left thigh. He said "that's the smoking gun, I believe." Hmmm.

He then turned to my wife and looked deeply at her and said "do you have any questions for me?" My wife turned and began a barrage of questions. He answered all of them and did not pass even one, off. Then he said, "Neurontin. Its a scourge of a medication that Dr.'s prescribe like candy. Inexperienced Dr.'s, who are accommodating the drug salesman. Today's golden bullet of sorts, that in reality is just plated instead of solid. He further said that the efficacy of the drug was practically equal in qualified user reports, to those of placebo. He did say to take care though when withdrawing from the medication. While it does help on the anti-seizure front, it does little to help with associated pain. Th medication should be decreased daily by about 300mg-600mg. Do though expect headaches, even migraines and photo sensitivity when withdrawing.

In Neurontins place he'd give me Lyrica. Then also Celebrex, and Nortriptyline. Together these would accommodate the discomfort levels being experienced, at least as a first attempt. To please call him if the pain was any higher than when on the Neurontin and the Ketofen topical compound. He said he'd return the call immediately, day or night. (Was this a doctor I was speaking to?). Then the wife finished her additional questions and we thanked him for his lengthy time with us. Nearly 1-1/2 hours. He turned and said, in my business I've seen many patients. When the days of hospital regulation came, my administrator desired for me to take on many more patients. I tried explaining that I needed to spend time to understand the whole patient and all of their needs in treating pain. All to no avail. At that time I started my practice which continues to this day." Hmm.

He then said he'd be scheduling me for a PN block under guided CT (the only way he does blocks of that type) within the next week. I asked why the PN block and not genitofemoral. He said, the other Dr's focused on the PN nerve for a reason. You have symptoms of that type of pain. You also have imaging verifying an inflammation at the Alcock's canal. He said, it would be easy for me to overlook this and go right for the genitofemoral, but we have indicators here that we should listen to first. I also stated that direction would also alleviate my concerns as well. (I'd been focused on PN pain and problems for so long now, I wanted a direct answer.

I then asked about PT. Should PT be tried in advance of the block. He said if you can tolerate pain, then we can discuss that direction further now. He said though that if the problem is in fact genitofemoral related, the body may be its own worst enemy. He said that a muscle could be trapping the nerve. If the muscle is in tension because of spasm, even back to the original onset, it may never have subsided or relaxed. In such a case lactic acid builds up and concentrates over the course of a little less than an hour. Then with no where to go, the acid ions flux into the surrounding tissues, irritate the nerve sending signals to the muscle, which in turn cause signals to be sent to the brain, which then returns a signal to the very muscle contracting asking it to move. The process then begins anew. Under PT if muscles in the area are built up without knowledge of the causing factor, the now stronger muscle itself could pose a similar factor in creating pain and you'd further delay knowledge of origination. A wait in this case until a specific understanding of causation is well worth it.

I scheduled the block for September 11th.

A New Approach

So having just left the very arogant doctor's office, we climbed into the car and started for home. We were reeling from what had taken place. Each minute that went by let our brains further analyze what had just happened. In my wife, temper mounted and began to flare. "Turn the car around. I want to give that doctor a piece of my mind. I'm furious. How would he feel if he couldn't work full time, let alone 2-3 days a week, because of his ailment that wasn't being properly addressed by the 'supposed' very best doctors in the world." She was on a tare. Fuming. We continued to drive. "You're not going back to that quack," she said to me. I nodded. "I refuse to let you go back to him," okay, I said. We got onto the Triboro Bridge heading towards LaGuardia Airport.."Turn the car around." She was incensed, as she should be. I began to talk her back from the edge, and then off the roof. I said to her that I was not going to go back to Dr. Richman, the guy is truly not of stable temperment in my judgment. The conflicts between his before vacation attitude and approach were vastly different from those afterward. Even within this visit, his demeanor and approach were flagrantly differing from the very start of the conversation to when it finished. Plus, how he treated his staff, in front of a patient no less, complaining about work schedules..Just wrong. I told wifey that I'd make sure to inform Dr. Feinberg of what had taken place and suggest he not refer patients into Dr. Richman's service any longer.

The lightbulb in my head went off. In research over the preceding few days I'd come across a Physical Therapy (PT) establishment on 46th street in Manhattan. I found their website on one of the Pudenedal Nerve websites and decided to call and send an email. The following day, low and behold, I got a return email.

Images - A way Back

The image on the left is my MRN. Please note the level of detail. I've placed markers on the image to show the very clear nerve roots. The image on the right is my MRi of the exact same area. While I believe a trained professional radiologist could 'see' some of the detail which is made extremely clear in the image on the left, MRN technology should be adopted by every center in America. There's no guess work. You compare and decide for yourself.

Okay, so I start this post by saying the following - as you may have read, my initial Neurologist (ick) placed me on Neurontin. While that medication may be great for some, it yielded undue results in me. Made me foggy, conflicted, severely reduced my cognitive abilities, etc. My new Dr. has replaced it with Lyrica. The change-over was difficult and I experienced symptomatic withdrawal and migraines from it. The first day completely off the medicine all my visual acuity came back. Colors looked normal instead of being enhanced, ethereal almost. In total, I probably saw withdrawal symptoms for about 5-7 days in varying degrees of severity. The first few days was difficult. I'm much better now on the Lyrica.

So, to sum up (at least to this point) - I referred myself to HSS to see 2 Dr.'s - Feinberg and Richman. Feinberg is great, though limited in ability for my ailment. He does appear to be an excellent doctor as patient advocate though. Then Richman, which I'll get to now...

The Dr (Richman) called me back 36 hours after I left a message for him, AT 9:45 PM!!(which I missed because I was soundly sleeping at the time.) The following day, I was now speaking with his secretary. She was telling me that the Dr. wanted to schedule a nerve block for me (yeah, finally..Feinberg had given me a prescription for a nerve block 3-1/2 weeks earlier.) She asked me when I would like to have the block done. I told her "7PM tonight" to which she began laughing. She told me the first available date for a block (guided, under CT scan) was September 11th (which would be 5-1/2 weeks after I was first prescribed for it.) I asked her if she was kidding, and she said, 'no why?' I reminded her of the infamy of the date. I then said that if not taking that date would cause me to fall to the back of the line, I'd take it. (I ended up taking it.) Before the conversation ended I asked to schedule an appointment to see the Dr this week. I wanted to discuss, in person, my failings with the Neurontin and its impacts on me and also his view of the MRN results. With some trepidation she said, okay, if you absolutely have to see the Dr. I have this Friday at 2:30 PM. I said 'done.'

On Thursday afternoon I received a call from the Dr.'s office. Could I reschedule for 10:30 Friday? Hey, sure.

Friday comes around and I wake up, shower, get to my parents house to change to a smaller car, drive into the City and arrive with 30 minutes to spare. Wifey (she accompanied me) and I have a small breakfast in the very decent Cafe within the annex of HSS. We then go up to his office and sit in the waiting room. Countering my earlier visit, we actually got in to an examining room about 20 minutes late. There, we waited for about 20 minutes. The Dr. came in and we began a 20 minute conversation (which occurred in 2 parts - the 1st lasted about 5-7 minutes. The second lasted about 12 minutes. In the middle he plain got up and walked out of the room and disappeared. Without any indication of why or where he was going. We did though hear him speaking with another patient during the time away.)

Having some medical knowledge I asked him about my MRN results. He initially could not recall what the findings were. (As a note, he didn't have my patient file with him, and had not referred to it before seeing me.) He stated he'd have to go look at the files and asked if I had the report with me. (Unfortunately no.) He had left for a scant minute or so and the returned to say that the MRN came back showing some inflammation and scar tissue. (Scar tissue? in my pelvis? I'd had no prior injuries or surgeries there.) He explained the nerve block procedure to me and how it would take place. Under guided CT scan, with Lidocaine and a steroid chaser. He stated that the CT was infinitely better at resolving the nerves than any other machine they had. Then I asked if he actually viewed the films (images) on CD provided by MRN. (Please refer to the top of this post for the actual images. Left MRN, right MRi.)

He asked again for the images from the CD I received. I explained that I know my file in his office had the disk and report since it was FEDEX'd to him last week and I confirmed his offices receipt of them.

He then walked out. 20 minutes later he returned and stated 'while I haven't looked at the images, I did read the report and consulted with the radiologist here. The report and the radiologist confirm there's swelling and scar tissue.' I asked if he was reading my report because I'd read it and it said nothing about scar tissue. He then said, 'we both (radiologist and himself) saw it on your scan. I asked which scan. He said the MRN. Then he said, "you didn't have to fly all the way to California to have an MRi done." I then said, Doctor, I went to Pa. to have it done. He said, "no, you had it done in California." I looked at my wife. We were both dumbfounded. What had happened to this doctor in the last 2 weeks?

Now reeling, I started asking very specific questions. I needed to know if this guy was all there or having a mental break-down before my eyes. I asked what his game plan was. I told him that Feinberg (my other Dr.) had told me that he was looking to Pain Management to take the lead and guide him on next steps. Richman responded caustically "this is it. There are no other steps. I can give you 3 maybe 4 blocks but your at the end of the line. There is no other viable option." I said, "well, I understand you might be limited because of focus (he bristled, but that was not meant to be a dig), but what about being referred to a neurosurgeon." He laughed out loud (I was now offended.) He said 'HSS doesn't have that specialty, that's out of our league.' I shot back, what about other Dr.'s not affiliated with the hospital. He said he didn't know of any. Then he bluntly asked ' so do you want the block or not?'

We were numb. What had happened to this Dr.'s manner and the way he treated his patients in the last 2 weeks. He was certainly not like this when I'd seen him prior. I'd have to say the only time I've ever seen such a drastic change was when someone was going through withdrawal, or hadn't taken his meds. (Not that I'm implying either here.) I just couldn't rationalize what had just happened.

With that, I said 'Yes.' He picked up the phone in this small exam room and called his secretary. I need an appointment for Mr....... (he looked at me.. I then said my name, further adding to my growing horror. He didn't even have my chart available to him to refer back to this unknown patient.) "Whens the next date for a block?" he asked his secretary. I needed to imagine the other end of the phone conversation he was carrying having. It included; "the 12th, at 2:00 PM"; the date then registered with him and he asked the phone "what day of the week that was?" Friday; He then said back 'FRIDAY?' vapid and dripping with contempt; He then said, "what time did you say?" The phone answered back...'2:00 PM'; "You know I only work 'til 12:00 PM on Friday's." The exchanges went on and on and got more and more heated. At least 5 minutes. He was complaining about working until 2:00 PM on a Friday because he typically leaves at 12:00 PM. He then lashed out stating that he'd "told EVERYONE this, EVERYONE knows this. Its been this way for 2 or 3 years." He remade his points another 3-4 times and then slammed the phone down.

"You're scheduled for 2:00 PM on September 12th. I'm doing the block under sonogram." I then asked, "didn't you say that you were doing me under CT scan because of its accuracy, and you didn't want to risk injury by misplacement.?" He said " yeah, well, CT scan is not available for another 2 weeks, plus sonogram is just as good. I'll....I'll make sure I discuss the matter with radiology prior to your block about whether to have it done under sonogram or CT scan." This was now 2 completely different doctors talking to me. It appeared one was frustrated, at knife's edge,..while the other was short but slightly concerned. He then, without saying anything else, left the room. That was it. Nothing else.

We left, shocked. As we walked out the door towards the elevator, my wife asked if I could wait that long, until the 12th. I turned and said..Wait that long? I'm going to be waiting longer, he's nuts if he thinks he's going to give me a block under sonogram, or at 2:00 PM on a Friday when he doesn't want to be around...

Waiting

So, the wait continued. Further research being done daily.

In the mean time I homed in on Dr. Renney's website. There's a bunch of information on there about PNE. It links to other sites as well as provides a great deal information for those with the potential condition. I'd decided to get in touch with the Dr. in order to begin the process of being selected as a patient and having a consult. In order to do this you must first have an initial telephone consult (free). This consult requires setting up a MEDEM account for 'secure messaging.' On the associated page you'll find a short YOU tube video of the Dr. explaining the MEDEM account to conform with HIPAA privacy guidelines. I signed up, filled out the appropriate medical background and sent a message with an explanation of my situation/condition, and waited. The website stated that the Dr would get back to the sender within 24hrs on business days. Sure 'nuff, I received a 'Your HealthCare Provider has sent you a secure message' email from the MEDEM system. I was told that the Dr. would have a free 15 minute telephone consult with me on the 15th, at 11AM CST.

The week before I'd just finished having the MRN and was awaiting the results. I'd hoped to have some of the results available to discuss with the Dr when I spoke with him the following Tuesday. Unfortunately, this was not the case.

Tuesday morning rolled around and at 11:30 est I began gathering paper and pen, jotted down all of my questions, made sure the handset I was on was fully charged and closed windows to prevent the street sound from interfering with the call. Noon rolled around (11:00AM cst) and I made the call.

The secretary answered the phone 'Sports Medicine' and I asked for the necessary extension, where another secretary picked up, "Dr. Renney's office, how may I help you?" I asked for the Dr explaining I had a schedule telephonic consult with him, "one moment please" and I waited. And waited. About 3 minutes went by when "Dr. Renney" was stated to me. The Dr. appeared to have scanned my initial email to him to quickly brief himself. I began telling him my story and after a minute or so interrupted. He asked a few diagnostic questions and then said, "we'll you don't appear to have the typical signs and symptoms of a PNE pt. but that doesn't mean you don't have it. The 3 questions I got to ask him were about his work with MRN (typically no help to him diagnostically), medications being taken (it's up to your physician), and when can I be seen (I'll have my secretary put you on the next available slot opening in ....mid-september.) With that we ended the call. It was 3 minutes total. I describe it as talking to a dry piece of wet toast. No emotion, no empathy, no instructive leads, nothing offered, nothing gained. Other than I needed to schedule an appointment via email.

I immediately signed into the MEDEM account and sent off an email. In turn I was sent an email stating that they could not schedule an appointment without first me filling out the 'New Patient Forms'. I'd completed these in anticipation of becoming a patient and immediately ran upstairs and faxed them down. A day later I received an email stating that a page was missing from the fax. I faxed the missing page down (That page appears to be on one file from the site, but not in another file from the same site.) The following day I received a messaging stating that I should go on-line and pick out a desired appointment date.

I went back on line and picked out every date from the current one until the end of October, while placing a short message at the bottom stating that with 48 hours notice I could be a fill-in patient (enough time for me to find a flight down and hotel accommodations.) The next day I received an email stating that I had an appointment set for September 18 & 19th. Wow, a month away. The daily pain was now 3-4/10 on average, with episodic spikes to 7-8/10. This was going to be a long wait. I'd hoped another Dr. would come up with something in the mean time.

Finally a week later some results. I placed another call to the MRN center in California. We were working with Danni. She was very accommodating, but I guess vacations also played a part out there as well with the dictation taking a great deal of time to get to them from the Dr. They had images ready and computed, but no dictation...'til Thursday. When we called on Thursday, they verified that on Wednesday the images and report were dispatched via FEDEX to my Pain Management guy, Dr. Richman (HSS). (While he was still on vacation through the following Monday, at least I knew he would have the results. Hooray!!.

The long weekend was made longer waiting and waiting. First thing Monday morning I placed a call to speak with DR. Richman. He wasn't available and as such I left a message to call me back. Detailed because I'd be in work for a portion of the day and then at home. My weeks had descended into 3 days in work 2 days out of work recuperating from the day before.

Tuesday came with no call from the Dr. I again called his office and left a message. Waited by the phone all day. (As a note, the week before when I'd received the report from the MRN, I'd immediately turned around and faxed it off to my Urologist, Neurologist (ick Dr. Gerber) and my Physiatrist. On Monday, my Physiatrist did call and speak with me. He was excellent about calling me back right away. He explained what the report said about its findings and then stated that he was out of his element with how to proceed and he would take the lead of Dr. Richman who dealt with these nerves.

In the mean time, my parents had been traveling. They know a few people here and there as well as some who serve on the Boards of Directors of John's Hopkins and Washington National. In turn they'd had me type up a huge fax relating my conditions, steps taken to date, Dr.'s visited, etc and the current diagnosis (none yet). They'd ask their friends to reach out to Dr.'s they knew and see what other assistance could be found through that tactic. At this point I was all in favor of finding anyone with any ability in this regard and just wanted to get better and free of pain. I then received a call on Monday night stating that a Dr. from John's Hopkins would be calling me this coming Thursday. On Thursday I made sure that the phone was welded to my hip.

On Thursday morning I received a call from Dr. Griffin, John's Hopkins University Hospital. A related friend of ours knew the Chairman of the Board Fred Saul, and in turn he reached out and asked Dr. Griffin to give me a call. W spent the better part of 15 minutes on the phone. Basically he stated that he'd be willing to give me a pain block immediately. He'd move his schedule around and make sure I'd be made pain free the following week. Though he was not intimately familiar with surgical releases of the PN, he said that no one in the hospital really had that expertise. My heart sunk.

The Tuesday before this I fell asleep with wifey next to me about 9:30 PM. Very sound sleep in deed since the night before I received very little sleep due to pain. At 9:45PM the phone rang on my night table, although wifey and I didn't hear it. A message had been left by Dr. Richman. (What Dr. returns calls from 2 days earlier at 9:45PM.) Anyway, he left a message to call him back the following day. Bright and early Wednesday I called his office and his secretary stated that he was scheduling me for a Ct Guided Pain block on Sept 11th. 2 PM.

more...

The Wait

The following day, Friday, after my MRN(i) I contacted the Neurography Institute to ask them for a copy of both the report and images themselves. I get results and hold onto them as they occur. I do not want any form of unneeded delay or barrier placed into the way of getting treatment. The charge for this was $55, as soon as the reports and images were completed, they'd FEDEX them to me so I got them simultaneous to the Dr.

The weekend went by. This is when a culmination of events began to take hold. I am a loved person. People are interested in what happens to me (or mightily feign it very well.) I was no being visited by my numerous friends and family and asked for updates. Those with longer distances to travel would email me, asking for an update. How do you go about explaining all that has happened in a brief manner. I could just say 'I'm doing fine, waiting for results,' but then I'd be reamed for not telling them 'all' the details if they in turn spoke with someone who'd received the 'full' update. My parents especially, bless their hearts, have a specific intrigued and desire to be 'fully' apprised of each and every step and my 'take' on the news and findings. Now, knowing that I have a great deal of medical knowledge and experience, my 'take' on things consists of not only the present knowledge, but also the ten-fold potential processes that might be at work, plus the unknowns. In the end, you go down the rabbit hole and could find 30 different routes to other lawns. For my parents, this cuts both ways.

Obviously, imparting knowledge or information on someone is straight forward, other than in figuring out the -proper - way to tell them. You need to guard how you present information to someone who is easily distressed or over-emotional. For someone who's a bit 'denser'..maybe..you have to slow things down and create articulate analogies. So, the mere task of telling someone can get quite complex. When you have many friends and caring relatives, the task becomes a project. This project is itself quite exhaustive, mostly mentally, but your body also gets run down form the excess hormones.

When it comes to those feint of heart, and if you have any type of empathy, then you will also consider what the stress of being ill has on others. Therefore, your considering the other persons heartache and as any caring person would do, try and relieve that problem. As such, it becomes a complex task because you're now trying to alleviate pain or concern from someone else, when you're the person causing it. Its almost a catch-22, and thoroughly distracting.

Anyway, through this time I kept researching. I've read more about Pelvic Pain and the Pudendal Nerve than I ever care to remember. I've gone through forums, chat sessions, news articles, published papers, over and over. I've read through Google pages on how to refine term and keyword searches. On and on and on. I've read PDR (Physicians Desk Reference) on medications. Read website after website.....

Beginning of an Understanding

So, Mila (HSS) spoke with Dr. Richman and the Radiologist and all came to the conclusion that they'd approve the referral for the MRN. I do not now know whether or not they did this because I was being a PITA (Pain In The Ass), or if they were truly intrigued by the technology I was seeking to use and wanted to see the results.

From what I have seen on-line, MRN (Magnetic Resonance Neurography) is a relatively new technology. While it uses the basic MRi machine and technology, it replaces the basic machine computational protocols to process water and hydrogen molecules differently than a standard MRi. The theory being that nerve cells and the bundles they create have a different composition in their basic structure and make up from surrounding tissue. They do share the common cellular composition with surrounding tissues, thereby making them relatively translucent thus, until this technology, extremely difficult to visualize. Their images tended to blur into the background tissue and make it very hard for radiologists to 'see' the nerve. In the case of MRN, through additional computational processing, the nerves 'light-up' and glare at you. You can see this type of technology in use in Dr. Filler's promotional YouTube video here. And, after hearing Dr. Richman state that the images he received from Radiology were not good enough for him to even consider a nerve block, MRN came to the forefront of my thinking.

With this, I pressed for MRN. Mila asked me to fax here some information on MRN. I went to the Neurography website, grabbed some images and faxed them to her. In turn she took them over to Dr. Douglas Mintz (HSS Radiologist) and in turn they agreed (or caved in) to have the MRN done. The active process then began.

I have GHI - National plan Health Insurance. Unfortunately, all of HSS and its doctors are out of network, and as such I then begin the process of submitting to a deductible. Its a tough process to go through since most people do not have an endless supply of co-payment cash laying around. We are though making due and are switching to another provider shortly which these doctors do subscribe to. (I understand the corporate needs of the Health Insurers as a whole, and their need to remain viable. As a first party example of financial needs to address an uncommon problem, I wish it were different, but I'll take what I have. Certainly a Nationalized health plan would leave other individuals with this condition waiting YEARS for diagnostics, let alone treatment, if they'd allow treatment at all. Something to think about.)

With GHI, they'll cover the testing costs to their percentage of out-of-network services. They also have a VERY aggressive approach to clearing diagnostic tests for authorization. In this case they out-source the clearance and authorization. This outsource company requires that they speak with the prescribing doctor (not just his office or nurse/PA). Some doctors are certainly too busy to do this and the waiting game then begins until doctor or clearing house wins. In this case, mt doctors have been excellent about speak with the new clearing house. (One of the benefits to choosing very good doctors is that they typically have a handle on the total needs of the patient, including their insurers.

Mila was excellent. I continue to be highly impressed with her abilities and attention to detail. In my brief conversations with her where we got on a personal basis, I could here the stress in her voice of having to deal with the many patients calling for help and assistance while the doctor was away. I may also have sensed the middle-person position she was in, possibly getting push-back from the doctor for disturbing him on vacation, or not whittling things down the absolute necessities. Guarding the gate is horrible sometimes. Mila interacted with the MRN facility in California. The Neurography Institute operates out of Santa Monica, Ca and then coordinates testing, procedures, facilities using the technology throughout the country. In my case an imaging facility that has acquired a licensed for the protocol is located outside of Philadelphia in Norristown, PA. (the exact location can be received by contacting the MRN office.) So, with numerous calls back and forth between GHI, HSS, and me, the test was scheduled. As a note, it costs $4500 and is considered a soft-tissue scan for insurance purposes. Some insurers still consider it experimental, so check with your insurer first.

The test was then scheduled for the following Thursday, 2 days away. I was happy about the scan since it would, hopefully, provide my now plethora of doctors detailed information and images. In speaking with my father, he came up with an excellent idea to stay local to the test since I live about 3-1/2 hours drive away. With that wifey and I made reservations at a nearby town hotel. We drove down on Wednesday afternoon and got in to our accommodations about 5PM. Was a very nice hotel, if I remember a suites place. Rate wasn't too bad $99 or so. I didn't get a good nights sleep though because of stirring about the test and what they might, hopefully find.

This takes me to a different area of discussion. When I started this process, I believed it was a Urological problem. Obviously, the thoughts of a major illness pop to mind and typically override all others. Having been a medic for 20+ years, that experience tends to callous over typical surface emotions. It also adds more 'perspective' on life as well. You understand the finality of life and how easily it can be taken away. Having dealt with RA (Rheumatoid Arthritis) for so long, the 'flares' come and go easily. In a 'flare' things sometimes become desperate, movement is strident and challenging. The pain is plain awful. During flares people can visually 'see' your pain and 'see' the swelling of the joints. It's easy for them to then understand what you're going through. In times of non-flare's' you still have RA and deal with it casually, but its still there. Sometimes not as bad as it could be, but still. You don't want to show any outward pain if you can, and so people around you believe you're fine. They don't understand the daily limitations you have with RA, the tiredness, the loss of some mobility, etc etc. This is sometimes translated by those who don't know or don't know how to process the condition, and with that the only way they can is by showing indifference or believing that you're not interested in them. Its quite contrary to their belief, but just the RA playing havoc with your typical life. (I'm dwelling.)

So, with the above, and having now been through a sonogram of the testicles; CT scan of the abdomen and pelvis; CT scan of the abdomen and pelvis with contrast and IV nuclear injection; MRi; plenty of very invasive internal tests and examinations; blood work; etc etc. all finding nothing out of the ordinary, and doctors looking at you saying we're not directly finding anything to go after and they begin their differential diagnosis process and give medication and now very painful and invasive testing; you begin to wish for something, anything, to be found. At this point I would have loved them to find a hidden tumor, growth, fibers, anything. This way they'd be able to provide me a direction to move in. Testing, with no result. Ugh. This allows people around me to have the disbelief nut planted in the fertile ground, to grow unabated.

I awoke on Thursday morning and we had a some OJ. Mary (wifey) had a couple snack cakes. I didn't want to eat anything in case they decided I needed additional imaging or contrast for the process. This way I could receive the contrast and be ready without saying, okay - you need to fast for 5 hours and come back. I wanted to be fully engagable(sp?). We drove through these desperate areas of Pa. Weird landscape traversing between rural farming, to suburban, to manufacturing/factory/warehousing. We then passed the Pa State hospital facility. Finally, we ran up upon the imaging site. Its in a non-descript building on a main road, next to a gas station, but within what appears to be a condo/townhouse community.

We walked in. I was not impressed by the front office. Looked dated. Like late 70's modern (for that time). The receptionist/nurse greeted us handily, couldn't find my chart or orders and became slightly distracted by it. She then spoke with me again and realized I was referred by California for a Neurography Study. I now got the picture of Neurography. It became clear that Dr. Filler had patented the technique and was licensing it to other MRi facilities. This now made sense. It was a technological reprogramming of MRi machines rather than being a dedicated machine. California was definitely running the process and procedures. I then needed to fill out copious mounts of forms. (This is one area I wish the medical community would standardize. You fill out the basically same form, over and over again. If they'd standardize the forms and then use a supplement to get information specific to their need, that'd be great.)

After much fuss, I waited for about 30 minutes when a nurse walked/ran in, in a flurry. She was very nice looking but a bit disheveled. She came in and a few minutes later walked quickly out, then in again after a minute. A different 'tech/nurse' came out and asked for me and explained it'd be a few minutes before the test would be ready. Finally the hurried nurse came out and said they were ready for me. She brought me into a very nice changing area and asked me to disrobe to my underwear and put this gown on. Then I was asked to empty my bladder in the bathroom. Finally, the second tech said they were waiting for the Dr. (Aaron Filler) in California to get back to them. They called him on his cell phone (it was a bit before 8AM Ca. time) and asked him to send over the protocol hey should use since it wasn't done the day before. The doctor was a few minutes from his office and then I gather emailed them the protocols.

They were ready. I walked past some very advanced control rooms into this HUGE room. Probably could house half a basketball court. There sat a large GE MRi machine in the center, underneath a very high ceiling 30'+ with atrium windows running the length. I was helped (not needed) onto the table. Then I was strapped in. The strapping was made up of additional testing sensors. They then handed me headphones since these machines are DEAFENING when they operate. I listened to NPR and Jazz throughout. I slid into the machine with my hands and arms placed above my head on the table. The machine fit me handily, but then the techs taped my feet together and then placed blocks of vinyl coated foam between my arms/shoulders and the machine side. This I gather in an effort to prevent me from moving around. It was then, tight.

The tech and nurse then began the testing. The machine hummed and rumbled. The first tests 9 minutes, then another 9, then 8, another 8, then 6 and finally 6. About 50 minutes in total. I was then dragged out and released. The last 6 minutes of the test was slightly brutal because I developed a cramp in one shoulder from my arms being above my head. This was severe enough to concern me about going past the last 6 minute test. I was happy to have the test end and be removed. Its not claustrophobia, it was just positioning.

Once out of the machine, I stretched a bit and asked for a copy of the images. They stated they could not provide any to me because they didn't have them. Huh? I didn't have the strength to argue, I just grabbed my clothes from the lockers, dressed and walked out, a bit unsteady still. The heavy sunshine was overwhelming. When I walked out Mary grabbed my arm to help steady me and we casually walked to the car. I told her about the test and the statement that they didn't have the images. She said she understood and told me of her conversations while sitting in the waiting room. She made friends with the desk people and nurses. She stated that they had a direct Internet link to California and Dr. Filler who was viewing images and results in real time. Once the test finished he had them and would begin processing them to provide the data, the report of findings and the images themselves. The whole process could take up to 2 weeks. In my passing the techs stated to me that the Dr. sounded as if he'd be interpret ting them right away.

Other than those items, the test and trip went well. I was impressed by the machines and setup behind the sparse waiting room of this facility. I was also very impressed that it appeared the doctor could review images and see them in real time via the Internet...

Pain Relief (or so I thought)

Thursday arrived. I was excited for the beginning to the end of my daily pain.

I had a 2:15 PM appt with Dr. Richman. My sister, through the efforts of her daughters hand issues, told my of a special parking garage for HSS patients and staff. I borrowed my mothers car (much smaller than an Excursion), grabbed the ever present wife and started for the city. Came down the FDR Drive, exited at 71st street and immediately made a right turn into...the wrong garage. There's a pay-garage right smack dab next to the staff and patient garage on 71st street. By the time you realize you're in the wrong place, you've passed the HSS garage and are dedicated to the private one. (HSS patients and doctors can park in the HSS garage for free. Just get your parking ticket validated at any doctors office in the Hospital and you're good to go.

I arrived at the Dr.'s office about 25 minutes early. As a new patient there are tons and tons of forms to fill out. In this case, no less than 10 sheets of paper. Upon concluding writing my diatribe, I sat there waiting. About 2:45 I was taken into one of the examining rooms, given a smock and told to strip. The Dr. would be in shortly.

Having been trained in emergency medicine I always enjoyed down time in a medical facility. It allowed me to explore new equipment, new medical books, static body part models, charts, cupboards, drawers and sometimes play with topical medications. In this case the models were very good, of the lumbar spine with little rubber 'tendons' (which represented the nerve bundles) were out. I picked up the model and proceeded to manipulate it. I then looked at a very nice pole mounted diagnostic system which monitored no less than 5 life signs. I played with it for a few minutes then left it be when I couldn't erase new settings I placed in it and then realized the system was networked and probably visible on a staff station outside. I also found some syringes and drapes, a medical marking pen (which I evenly swapped with the Dr. for my liquigel pen) and some ethyl chloride (I needed to play with this freeze compound.)

About 3:25 the Dr. Richman arrived. We had a lengthy conversation about my case, a full examination, a look-see of the prescription issued by Dr. Feinberg. He then called said he needed to use the rail hung PC to bring up my MRi images from the hospital database (he stated his wireless laptop was presently charging.) On a larger 22" monitor up popped my recent MRi. He looked at the images and made a pssh sound. He stated the images were not of the quality he'd like to see. He asked if there was any issue with the people in the radiology office and I said no. He then noted the images came off an open MRi machine they had. He then asked if I was claustrophobic, to which I stated no, its just that the other machine wasn't available. He then brought up the radiologists report and read through it. He finally stated that he had two issues for being able to conduct blocks today. 1st he didn't have the necessary imaging he would wish, so I needed another MRi. Next he stated that the blocks would be done by CT guided technique and that would be done in their CT Pain lab, which would require out-patient scheduling.

So, he was going to schedule another MRi and speak with the radiologist to make sure I got the real deal. (This leads me to wonder why HSS does not have the best of the best machines out there to provide their doctors with the best information and testing possible. Oh, nay-sayers I understand, it comes down to money, but still. HSS keeps many doctors gainfully employed who charge premium rates to their patients. Typically HSS Dr.'s do not participate in the most available health insurance.) At this point I began asking him about recent research I'd done on imaging, testing processes and the like, including MRN. He stated that he'd read some papers on MRN and was intrigued by the findings and ability, but he had not yet come in contact with the technology. He then picked up the phone and tried to find the head of radiology to speak with her about it. He tried no less than 10 extensions to find her, but it was nearing the end of the day and things around the hospital were hectic with a good deal of patients. He then told me he would speak with the Radiologist to get the departments impression of MRN and get back to me to arrange further testing. He also indicated that he was leaving for vacation the following week and would return on the 25th, but would no less call me later. (never did). I asked him in the interim, how I should approach pain resolution. He stated he'd increase my Neurontin 1200mg t.i.d. and gave me 2 scripts for a ketofen/ketomine/lidocaine/amitryptoline compound. The compound I should rub into the anorectal area 3-5x per day.

My wife, who has been ever so kind throughout all, ran down the prescriptions the following day. A pharmacy listed on the prescription sheet in lower NY was contacted. They didn't have an immediate answer whether they'd be able to build the compound immediately or not. They'd get back to us. We contacted our regular pharmacy, who also didn't know if they could build the compound through their traditional suppliers. Thankfully we were pointed to a pharmacy in East Meadow, NY called Prescription Headquarters. These people had immediate answers. They'd have the compound available for pickup the next day, Friday. They are exceptional people and truly care about patients and their needs. Certainly in my case they understood that pain is a terrible thing and they expeditiously worked to assist in my case.

The next day I called the Dr.'s office to see what he had found out from the Radiologist. I got his PA. The Dr. was now on vacation. Huh? He said he'd get back to me. He hadn't. This is not turning out to be an HSS experience like I'd had or my family had experienced in the past. Was I sliding into a venerable black-hole of medical diagnostics? Was my condition not pretty or easy enough? Ugh. I began to see the writing on the wall. I needed to press the issue and press hard. Time for self-realization. I asked the PA (Mila) about 2 things. First, imaging. Thankfully, the doctor appears to be extremely adept and more long-winded than most doctors in writing notes. He's able to type and typed the notes into his now charged laptop. She read them on the phone with me. He noted MRN and the need to speak with radiology. She asked if I would call on Tuesday so she had time to seek out the radiologist and speak with him. Fine.

I called on Tuesday. She'd spoken with the Radiologist and he didn't know anything about MRN. I asked if she wished me to send over some info on it, and she said by all means. I sent it over to her and she immediately took it to the radiologist. They got on a conference call with the vacationing doctor and discussed the matter. They concluded that HSS couldn't assist me with the specific test, but they would seek out a partner hospital in NY that had one. She called several hospitals to find out no one had the test equipment or protocols. She then said the radiologist would issue the order to have the testing done. (Yeah.) I also stated that I was blowing through all of my Neurontin the other Dr has prescribed and needed a new order. She immediately called the pharmacy and had them fill the new script. I have to say, Mila is an exceptional PA who is detail oriented and accommodating and has the ability to think on her feet.

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

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.