December 15th: Spinal tap in Dr. Arce's office at 9 am. The drive to Columbus was a nightmare with an accident around Canal Winchester. Many of you know how that usually turns out early in the am. Needless to say we were more than an hour late but fortunately the practitioner doing the procedure had an opening. My greatest fear right now was the idea of the spinal headache as I had experienced in August. I planned ahead and told work not to expect me, laundry was done etc...all I had to do was get home and lay in bed until I felt out of the woods (about 72 hours).
Her first question was "do you have trouble getting numb?"...not what I wanted to hear as I just came off a dentist appointment with numbing trouble (pretty common for me) (by the way, my wonderful dentist, Dr. Spero, gave me an awesome cane). She got out the high-level numbing potion and Tony got me on the table. I had to curl into a ball of sorts with Tony holding my legs so they would stay curled up. She gave me a couple shots to numb me and they seemed to work. So....keep in mind she is inserting this needle into my back and searching for my spinal sac totally by feel...no fluoroscope here! It seems that I have a bony spine as she was having a tough time maneuvering around it...fairly unnerving. She pulled the needle out. Another shot to be sure I was numb (there is no associated pain but one can feel the pressure as the needle moves around...sorry!). In she goes again from another angle and again she cannot get around my bony spine. AAAAGGGGHHHH!!!! This gal really was very nice and she does taps all the time. Did I want her to try again or did I want to go to Riverside under the fluoroscope? She stated she rarely has to go in a third time. I asked her what she would do. Riverside. Luckily, they got me in that afternoon so off we went.
Easy. Once we checked in, did blood work etc. the procedure itself took about 15 minutes. In the car, seat all the way back hoping and praying for no headache. I did lay as flat as I could for a couple of days and as each hour passed I believed I was going to be good to go. No headache!! Yahoo!! I hope I never have to do another tap again.
December 14th was my last day at my office. I ended up not going back. I was, for the most part, struggling to walk even with a cane. Teri brought over her little walker/buggy and that seemed to help me get to the kitchen/bathroom. Getting out of my chair and off the potty was becoming increasingly difficult because of muscle weakness/fatigue associated with CIDP. I chose my "house travels" carefully and my Iphone tucked in to my bra served as my "I've fallen and can't get up" device.
The Turmans shined up a wheelchair they had and brought it to the house. The Conways had a ramp for us to borrow. This would at least be easier to get me in and out of the house. This generous help was brought on by the fact that one evening after a Christmas party get-together with all my gals, my great friend, Joan, brought me home. We have one pretty good step from our garage to our house and in the past I usually had Tony behind me, cane in hand, and he kind of boosted me in to the house. Joan and I should have known better. We did just this but my legs were jello and I fell...would have been nice if I would have fallen in to the house but instead I fell half in and half on the step. Joan was horrified but all we could do was laugh. I cannot describe the next ten minutes but suffice it to say below zero temps are a great motivator. We tossed and rolled and laughed and finally got me in the hallway. Then what? Joan pulled me across the floor where we both sat on the floor against the couch until Tony got home. Awesome bonding. A reality slap.
Cleveland Clinic got me in to their neurology department on December 30th. The goal was a second opinion and to explore any other treatment options. We went the night before, stayed in a handicap hotel room and were ready to go for my 8:30 am appointment. Questions, questions and a very thorough exam (my weight had dropped by about 15 pounds...whew!) by two neurologists produced a concurring diagnosis of CIDP. These neurologists suggested an aggressive IVig regimen; five treatments in a row right after the holidays followed by two consecutive treatments each month through April. They too were against prednisone at this point and believed I stood a good chance of improvement with IVig, physical therapy and rest. We felt oddly good about our visit, the concurring opinion and treatment plan. At least we had a path to follow now.
Christmas was quiet but calm and peaceful. New Year's Eve was spent with some of our very great friends and a few toasts to a better 2011.
On a crazy side note:
Cleveland Clinic visit with blood tests: approx $3800
Per Ivig treatment: approx $6000-$8000 per (fluctuates depending upon cost of product)
Riverside for five days was about $22,000 (seems like a bargain)
Plus all the other miscellaneous testing/prodding
My family monthly health insurance premium: $875 (relatively low by insurance premiums)
The math is an eye-opener. We are thankful.
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