(a recount of our journey continued)
I'm not sure if you remember, but I had to wait an exceptionally long time to see the specialist in Phoenix, 5 months to be exact. Well I had been a very busy girl during those 5 months, busy researching and trying to figure out some answers. The Phoenix specialist wasn't the only one in our country, there were 4 others that I was interested in, only problem was that it required traveling longer distances, which is not easy for someone in my shoes.
Specialist in Minnesota- I had called and talked to his office a couple of times, they sent a large packet by mail to be filled out and returned at my appointment. I called in August of 2011 and I was scheduled to meet with him on September 22nd, yep that's right, only 6 weeks out. After reading through the packet I learned what this consultation would entail, after a physical examination, I would more than likely have a pudendal nerve block done. This specialist recommends three nerve blocks total, which would require traveling to Minnesota each time, as this was the specialists typical treatment plan for PNE patients before considering surgery. Curious about the nerve block I googled pudendal nerve blocks to learn more about this procedure. BIG, BIG mistake, no good came from this...NONE! I was led to a YouTube video of the procedure and after watching I must admit I was a little freaked out. I knew I would not be able to endure this block without anesthesia. I called the office and asked if this would be an option. She explained to me that all of his patients are awake during the procedure and that it was very typical for this procedure to be done like this. After thinking it through for a couple of weeks I knew I would not be able to go through with this appointment, I ended up canceling out of great fear. I was already scared to to sit on a flight for that long, and the thought of going through with the procedure only added to my anxiety. I was desperate for answers, but apparently not that desperate yet! I thought I could always re-visit this option another time, but I wasn't mentally prepared or willing to go through something like this. For now the Minnesota specialist was checked off my list.
In all my time researching there was always one thing that came up when searching through Websites, this was the MRN. I was very interested in having one done in hopes that we could figure out what was going on, but there were a couple of issues. First it was not covered by insurance, $4000 plus dollars. Second, most doctors I spoke with didn't seem to know what I was talking about, hmmm? The one doctor that did know what I was talking about strongly discouraged me from getting it done. I felt so confused??? I kept reading about the different types of MRI imaging, there seemed to be a lot of controversy regarding the use of MRI's as a diagnostic test for ruling out PNE. One night I stumbled across an interesting post on the Pudendal Hope website. It seemed that a radiologist in New York was having success with finding issues in the pelvis that most MRI's were unable to detect. I read a few remarks from people that had positive readings for nerve entrapment and finding other issues that compromised the pudendal nerve in some way. I called the Hospital of Specialty Surgery in New York the next day and asked several questions. I learned the radiologist uses a MRI' T3 machine, and that my insurance would cover this test. I set up an appointment, but to my disappointment they were booked out for 5 month's. I would have to wait until January 18th 2012 before I could receive this test. I truly don't understand why I always have to wait so long to get help...so frustrating!
Even though a month later I ended up scheduling what I thought was going to be a MRI' T3 in Phoenix, I decided to keep my appointment in New York as a back-up plan, you know...just in case. Mmm hmm...this is where plan B comes into the picture. I'm so glad I kept my MRI appointment in New York, because Phoenix let me down on the MRI side of things big time! On our flight home from Phoenix I knew exactly what our next step was going to be on our PNE adventure... we were heading to New York.
The day after returning home from Phoenix I called the next PNE specialist on my list that I was interested in consulting with. He was located in New Hampshire, his clinic is considered the first and only Pudendal Neuralgia Treatment Center in the United States. At this office they do things a little differently, the receptionist explained to me that prior to scheduling an appointment for me she needed to set up a phone consult with the doctor first, he would then determine if I should fly out for an evaluation and testing. What a great idea, and the phone consult would even be free. She told me I would receive a phone call sometime in the next two weeks.
Next on my list was a doctor that my pelvic pain specialist and physical therapist highly recommended after returning from the 2011's IPPS (International Pelvic Pain Society) Conference at the end of October. They both seemed very impressed with his presentation and suggested I should consider consulting with him. My physical therapist thought maybe I should just go and see him and skip going to Phoenix altogether, but after waiting so long to see the specialist in Phoenix, I was finally only 5 weeks away so I decided to stick with my original plan.
After returning from Phoenix I reconsidered their suggestion and contacted this doctor they spoke so highly of. He is a Neurosurgeon out of Baltimore, he studied at Johns Hopkins Hospital, and now ran the Institute for Peripheral Nerve Surgery. His office was very friendly, I mentioned that I was already scheduled to fly out east in January for another specialist and that it would be nice if I could coordinate the appointment around the same time as to avoid flying back east again. I knew this long flight was going to be difficult for me, I was really hoping to kill two birds with one stone. They were so nice to work with me, I was scheduled for the day after my MRI in New York. Flying from New York to Baltimore would be easy. The only down side the neurosurgeon does not contract with any insurance companies, my 1 hr. consultation would cost us $750...ouch! He was also concerned that I had not had a pudendal nerve block yet. The block is used as a diagnostic test to confirm PNE. His office will set up the consultation only if the patients nerve block was successful at relieving the nerve pain. I worked with the pelvic pain specialist at the U and was scheduled for my first nerve block on Dec. 29th. If the block was successful at relieving the pain then I would keep my appointment as planned.
So two weeks went by and I hadn't heard from the New Hampshire specialist as of yet. It was getting close to Christmas which is a very busy time of the year, so I decided if I hadn't heard from him after the holidays I would contact the office again. The last week in December I finally received the phone call that I had been waiting for. He apologized for taking a little bit longer than normal in getting back with me, and was extremely kind and compassionate towards my situation. We spent close to an hour discussing my history and talking about my options. He felt coming out for a consult and testing would be best in my case. He said someone from his office would contact me to schedule an appointment. I explained that I would be out east in about three weeks and wondered if I could arrange my appointment during the same time. He was not sure what his schedule looked like exactly, but he did know he was booked out until March. He told me to mention my situation to his receptionist and they would do their best to work with me.
The receptionist understood what I was trying to accomplish while traveling back east. She has seen first hand how this condition affects people like me and knew it was going to be difficult to travel so far to meet with the specialist. She was willing and determined to make this work for me. She called back to let me know they were able work something out in my behalf, except there were a couple of glitches. First, she explained that the doctor was willing to meet with me during his on call day. Which meant there could be a slight possibility that he may get called away during my consult or I may have to wait for my consult if he is hung up at the hospital delivering a baby or dealing with another type of emergency. Second, the day that they were able to work me in just happened to be the same day that I was scheduled in Baltimore. Hmmm...a little bit of a dilemma. That was the best they could do for me and if I didn't take that offer I would need to wait until March to have my consult in New Hampshire.
In an attempt to make the most out of my time while traveling back east, I started looking into different options. I called New York to see when the next available appointment was for the MRI would be. The soonest available was not until the end of April. Considering that I had already waited almost 4 months for this MRI, my decision was easy, I made my mind up and I decided to stick with my original date in January. Besides, we had already purchased our flights for New York and to Baltimore.
I worked with the specialist in Baltimore next to see if we could work out a different day during that week, but he was returning from traveling outside of the country the day prior to my appointment and was completely booked up for that week. That's when the receptionist offered a different option which ironically was something that would work for us. She told me that the neurosurgeon also has an office in Henderson Nevada that he visits about once a month. He was planning on being there next in the middle of February. I liked the idea of flying to Las Vegas, it is less then an hour flight from Salt Lake, I could manage that much easier then flying back east again in March to visit with the New Hampshire specialist. I canceled our plans to Baltimore, rescheduled for Nevada, and officially scheduled New Hampshire's appointment. Our flight form New York to Baltimore was booked through Southwest, and Southwest was willing to give us credit for our canceled flight. It worked out great because we were able to use our credit towards the flights to Las Vegas the following month..
Plan B is arranged and in place, in just a matter of a month's time I was scheduled to visit with three more specialist. The best thing was that I didn't need to wait very long for my appointments. Minus the MRI and a couple of hiccups, plan B came together very fast and I was looking forward to the possibility of options that lay before us as we set out on our east coast adventure.
