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...
Thursday, August 28, 2008
Tuesday, August 26, 2008
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.
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.
Monday, August 25, 2008
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
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
Sunday, August 24, 2008
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.
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.
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