Beginning of an Understanding

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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