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.....