Well, now the adventure begins... (If you can call, finding a way out of my medical crisis, an adventure) I am determined to find someone who has some experience with PNE. I had anticipated my appointment with the pain specialist at the University of Utah for a few weeks, and it was finally here. I had been doing so much research in the weeks leading up to this appointment, and felt very prepared, with lots of questions and concerns. After a very thorough examination, he sadly confirmed, that I indeed had PNE. My problem was much larger than piriformis muscle syndrome, and even though I had already figured that out I my own, I was still disappointed. I knew the road to follow was not going to be an easy one. He strongly urged me to get started on some medications to slow the nerves pain response to the brain. This time, I heeded the advice about starting the medications, he explained that the nerve could become permanently damaged and become sensitized (central sensitization). That scared me more than the side effects of taking the medications, so I went home and stated that same day. (more on medications for nerve pain in a future post.) He also suggested physical therapy, he gave me a name of someone who specializes with pelvic floor conditions, including PNE. (more on physical therapy in a future post) Finally, we had a very long discussion regarding all the information I had researched online. He knew more than I had expected, I learned he was a board member for the International Pelvic Pain Society, and he was also the president for two years at one time. He knew all the doctors and treatments being offered for someone like me, and he was able to direct me more clearly on what needed to be done, and what I should avoid. Unfortunately, he was only going to be able to monitor my medication, so he referred me to a pudendal neuralgia specialist in Phoenix. Although I knew this would be a potential possibility, I still walked away completely shocked at the idea of traveling out of state for a solution to my chronic pain.
Setting up an appointment for Phoenix turned out to be another knocked to the ground experience. Just as it seemed things were looking up for me, and I had some options to explore for a chance of getting better, Phoenix soon had me in a state of devastation. When I called to set up my appointment, ( it was July 2011 for a reminder) and she said "The soonest available appointment is February 22, 2012" I thought "did I really just hear that right" I repeated what I thought I had just heard, and "yes", she really did say February 22. What!!!? Seven months, how am I suppose to do that, it had already been six months and now you want me to wait seven more? Holly crap, not only is my wait longer than the amount of time I had already been suffering with this condition, but it also takes me past my one year mark of the original surgery. Why seven months? I don't understand, She explained that he is only able to see one PN patient a week, because of the amount of time PN patients take up. The appointment would be a 90 min. consultation, and he doesn't have time to schedule that out more than once a week. Wow! Even though I was not happy about how long I would have to wait for this appointment, I went ahead and set it up. There were a couple of reasons that I wanted this appointment in Phoenix. In doing all my research I had read many great things about this specialist. Also, he did accept my insurance, and of the five specialist in the United States, Phoenix was the closest to travel for me, and that's a big deal, especially when sitting creates excruciating pain.
Some instructions given to me over the phone for this appointment was to first, I needed to schedule an appointment with a physical therapist that he works with, she would do an evaluation of my condition to send to the doctor. I explained I already have a physical therapist here, could I send you my records? No, you have to be evaluated by the one we recommend prior to your visit with the doctor, either the day before or the morning of your appointment. Second, you need to schedule a MRI as well, also the day before or the morning of your appointment. After jotting down my instructions, I asked if I could be put on a cancellation list, you know, just in case something happen to pop up in the next few month's. Good, she was able to do that for me.
In September, after a couple of months, I received a phone call from the Phoenix office. The girl starts to explain that they want to try something different in scheduling appointments for the doctors PN patients. Okay, I'm listening... instead of a 90 min. consultation appointment with the doctor, you would meet with his PA (physician assistant) the day before, to go over your history, and for an examination. And then, meet with the doctor the next day for a thirty min. appointment. This would cut back on the time the doctor would have to spend with his PN patients and therefore would result in seeing more than one a week. I had the option of sticking with my original date, or I could change to this new system the office was trying out, and come in on December 5th. That's almost a three month difference, without any thought, I had her change my appointment. I was totally fine going with the new scheduling system for PN patients, it still allowed me to visit with the specialist, and it would be in the year 2011. Finally, I see the light, December 5th seemed just around the corner, as February had still seemed so far away.
Well, in October, I started making arrangements for the instructions that revolved around this appointment. I called back to the office to find out some more information regarding my MRI. The MRI would be at St. Josephs hospital, but I could not just call up the radiology department of St. Josephs and schedule a MRI for myself, I needed a doctors order or referral. The specialist's office was unable to do this for me, since I was not an established patient of this office yet. Well that just seems silly, you asked me to get the MRI prior to my appointment, but you won't help me get it scheduled? Are you kidding me... so annoying! So I give the specialist at the University of Utah's office a call, and ask for some help in getting a MRI scheduled out of state. She was reluctant at first, she had never scheduled an MRI for an out of state facility. So I call back to Phoenix, and get instructions for exactly what needed to be done, in order to get this MRI scheduled. This was a two week process, and a giant pain in the you know what. After a couple of faxes, and finally, a written order from a doctor that I was established with, I was finally able to call and set up this MRI that I needed for my appointment out of state. When I called the radiology department to schedule, they asked "do you have a doctors order?" "Yes, yes I do," (only after jumping through several hoops) I did have the order. So we proceed with the scheduling, She said, "we can get you in the following week." "Wait, I actually need my MRI for December," "oh," she says, "I don't think we can schedule that far out." So I then have to explain, that I am flying from out of state, and I need this scheduled one day prior to an appointment that I have already had to wait for three months now, so, when will December's schedule be out, so I can get this scheduled? She says "ummm, let me see here" she was able to go to December on her schedule, she had just never had to go so far ahead before in order to schedule a procedure. She got me on the calendar, and finally, I was set up for a MRI one day prior to my appointment with the specialist, whew.... after all of that, I was relieved. Calling up to get my appointment with the physical therapist was no biggie, they were able to schedule me on the same day as my MRI for later in the morning. Only bad news, the physical therapist doesn't take insurance, the appointment was going to cost us $275 paid in full, prior to the appointment.
So, Phoenix goes as follows, fly in on Dec. 4th, MRI scheduled at 7:30 am on the 5th, physical therapy appointment at 11:00 am, and appointment with the specialists PA, at 3:00. On Dec.6th, I finally meet with the specialist in the morning, and fly home that afternoon. Everything is set, I just need to wait another seven weeks. Waiting is hard, especially when you're in pain.
Specialist Here And Specialist Where? (Part 2)
Praying for you!
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