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...