My journey probably began two or three years ago. I work as a paralegal and as such, I do most of my work on the computer. My left wrist began aching while I was at work, but would calm down at night and over the weekends. I thought I was developing carpal tunnel. The attorney I work with noticed that I was rubbing my wrist one day and asked if I was O.K. My response was that it was nothing and it was probably just carpal tunnel, a hazard of my job. He insisted on me using an ergonomic keyboard and I had a new one on my desk the next day. I began using this new keyboard and noticed that my wrist didn't ache. This was great news to me. Now I didn't have to take time off of work to go to the doctor and possibly have surgery. My workload continued to increase and in 2005, it became apparent that I needed an assistant, at least part-time. By 2006, my assistant began working full-time and I share her with my supervising attorney.

By November 2006, the pain in my left wrist came back with a vengeance. But again, on weekends it seemed to dissipate. I continued to believe I had carpal tunnel, but the holidays were fast approaching and told myself I would deal with this issue after the 1st of the year. On Friday, December 1, 2006, an awful snowstorm hit Wisconsin. I knew that it would take longer to get to work, so I left my house at 6:30 a.m. At 7:00 a.m., I was about 5 miles from my house with another 5 miles to go before I arrived at work. My cell phone rang and my supervising attorney indicated that the office would be closed and to have a good weekend. I went back home, arriving there at 8:30 a.m. I was gone two hours and traveled 10 miles. After arriving home, I thought I would use my time wisely and begin baking Christmas cookies. I noticed that I would get a sharp, shooting pain in my left wrist when I would try to lift a cookie sheet or hold a measuring cup in my hand. The pain was getting progressively worse and I was becoming nauseous. My pain level was at least an 8. At about 2:30 p.m., I went outside and asked my husband, who was clearing the snow from our driveway, if he would mind taking me to the Walk-In Clinic.

Because of the snowstorm, I was seen immediately. The doctor ordered x-rays, put me in a removable splint, prescribed Vicoden, and told me to make an appointment with Dr. Eric Gaenslen, the hand and upper extremity doctor at the clinic. I stopped at the reception area and made an appointment with Dr. Gaenslen for the following Thursday. At that appointment, Dr. Gaenslen indicated he did not believe I had carpal tunnel syndrome, but rather cubital tunnel syndrome since the numbness in my ring finger and pinky finger were indications of that. He prescribed Ultram for the pain, physical therapy, an EMG (nerve conduction study), and for me to return in two weeks.

After two weeks of painful physical therapy, I returned to Dr. Gaenslen and indicated that the physical therapy was making my symptoms worse. Although the EMG was basically normal, I still had the numbness and it was beginning to spread into the palm of my hand. He ordered another x-ray of my wrist and noticed a small fracture in my lunate bone. He casted my wrist and told me to return in three weeks. He also prescribed Darvocet, three times a day, for pain. I must admit that I only took the Darvocet at night, so I could get a few hours of sleep before the pain would wake me up. When I returned to Dr. Gaenslen, he ordered a MRI. When I went to see him to discuss the results of the MRI, he came in to the examining room and put the MRI films up so I could see them. He then wrote on the erasable board "Kienbock's Disease." He showed me on the films how my lunate bone was black and the small fracture was showing up white, along with all the other bones in my hand and wrist. He told me that I had Kienbock's and told me to go home and find out all I could on the Internet or in the library and return to him in a week and he would answer my questions.

Needless to say, I was stymied. Thankfully, I found the DarkerBlue site and read everything I thought was relevant to me. When I returned to Dr. Gaenslen, he indicated I was in Stage II and what my options were at that time. Conservatively, he wanted me to have a new cast on my wrist for at least six weeks. After the six weeks, he would do another x-ray to see if there was any change in the lunate bone.

For six weeks, I trudged along; taking baths instead of showers, going to the beauty salon three times a week so I could get my shoulder-length hair washed, putting more responsibility on my husband with housework, cooking, and washing dishes. My adult children, while concerned, all had families and households of their own to take care of. I continued to work full-time (which was about 50-60 hours per week). At the end of the six weeks, a new x-ray indicated no change. The cast was removed and Dr. Gaenslen indicated that my options were to do nothing or to have surgery. He was suggesting a vascularized bone graft from my hip (iliac crest). He would either use an external fixator or use pins to keep the other bones in my wrist from putting pressure on the lunate bone during the healing process. I would be in a cast or the external fixator for 12 weeks.

So now it is April 2007, and I'm looking at all of the plans my husband and I have scheduled for the summer. If I do nothing, I know that I will continue to have the pain in my wrist and will have to continue with the pain medications. From what I read on the DarkerBlue site, I know that things are only going to get worse, but there was really no timetable for the progression. But if I have the surgery, some of our plans for the summer could still be salvaged because I would be out of the cast or external fixator by mid-July, just in time for our vacation with the whole family on a lake in northern Wisconsin. While I realized that I would still need to have physical therapy following the surgery, I thought that at least I wouldn't be in pain on our vacation with our children and grandchildren. Therefore, my surgery was scheduled for April 23, 2007.

I know now that my journey with Kienbock's Disease ended on Monday, April 23, 2007, and my journey with CRPS began. I woke from surgery and was in excruciating pain. It felt like someone was ramming red-hot pokers through my wrist. My husband said I was screaming and crying at the same time. I was given a shot of Fentanyl, 20 minutes later I was given Percocet, and finally, 20 minutes after that I was given Oxycontin. The nurse helped me get dressed, put my arm in a sling for the ride home, and attempted to place an ice pack inside the sling. My husband got me home and situated in bed with my arm elevated on three pillows and was able to put an ice pack on my wrist. Every 4 hours, my husband woke me to give me Percocet. He told me that he didn't ever want to see me in the same pain that I had in the recovery room.

My hand was bandaged up to my elbow, but my fingers, knuckles and thumb were all free. The portion of my hand that I could see, as well as my fingers and thumb, was extremely swollen. I continued to wiggle and move my fingers as best I could do. My hand was elevated at all times. By Wednesday, my hand looked sunburned and the burning in my wrist at times had me in tears. By Saturday, my hand did not only look sunburned but also looked plastic. My husband was concerned and we went to the Walk-In Clinic to make sure there was no infection. The orthopedic doctor, who was on-call, unwrapped my bandage and indicated everything looked fine and that I was doing a good job in keeping my hand elevated and iced.

For the next two weeks, I continued to take my pain meds, kept my hand elevated and iced at all times, and kept my fingers moving. The burning pain in my wrist continued to increase. This was not the same type of pain I had prior to my surgery; that pain was gone. I returned to the doctor on May 8th. The stitches were removed (a very clean incision) and I was placed in a cast. My hand was still swollen and I attempted to explain the burning pain I was experiencing to the doctor. After the examination, he believed (and convinced me) that I was having a reaction to the inserted pins but that he would like me to try and tough it out so that the new bone graft had time to heal. He indicated I could return to work full-time the following Monday but that I could not lift anything with my left hand. Working as a paralegal, there was very little lifting I had to worry about other than a file and most of the files I could manage with one hand.

I returned to work on May 14th, hoping that work might distract me from the pain. Because I had to drive myself to and from work, taking any pain medication during the day was out of the question. By the time I got home from work, I was in tears. It always took 4 to 6 hours before I felt the pain was under control and then it was time to go to bed and start the process all over again. My hand had now begun "shedding." It looked like a "snake shedding its skin." I returned to the doctor on May 22nd, and he placed me on a work restriction of 4 hours per day, in the hope that I could get my pain under control so that I could function. He still believed that my body was having a reaction to the pins. I returned to the doctor again on June 7th. He ordered a CT scan to see if the bone graft was healed sufficient enough to remove the pins. The results were positive and the pins were removed on June 25th. The pin removal was supposed to be done by administering a Bier Block. When the anesthesiologist looked at my swollen wrist, hand, and fingers, she indicated that there was no way that she could perform the block and discussed and administered an ancillary block in my left armpit.

Even after the pin removal, the burning pain continued. I returned to the doctor on July 5th to have the stitches removed and when I mentioned the burning I was still having and the numbness in my forearm, as well as how concerned I was that my hand was still so swollen, he indicated that there was no reason for me to be having the burning any longer since he removed the pins, and that the numbness would dissipate in time as would the swelling. He wanted me in physical therapy immediately.

I had my first session of physical therapy on July 6th and even though I had been seeing my doctor every two weeks since my surgery, it was a physical therapist that raised the suspicion of Reflex Sympathetic Dystrophy (RSD) or as it is now called "Complex Regional Pain Syndrome (CRPS)." In my work as a paralegal, I had reviewed medical records of clients that had a diagnosis of RSD. I did not understand what had caused such a diagnosis since the original injury was from a slip and fall causing a sprained or broken ankle. I don't know that I still understand this diagnosis except that it causes pain when there should be none, swelling when there is no reason for it, immobility of a joint, and disruption of one's life.

When I was originally diagnosed in July with CRPS, I was placed on Lyrica and Amitriptyline, along with Vicodin. It is now November and after six months of physical therapy and seven stellate ganglion blocks, I am now told that there is nothing more that can be done. I may be able to be "weaned" off of the Lyrica and Amitriptyline but I will probably remain on Vicodin for the rest of my life to help with the pain control.

I now have lifting restrictions because the bones in my hand and forearm have lost density as a result of CRPS. If the temperature is below 70°, I have to wear a mitten on my hand to keep it warm. I don't know that it's cold, until I look down at it and it is turning blue. I wear my mitten in church, at the grocery store, and sometimes in my office at work.

My success with CRPS as of this writing does not have a "happy ending." I know that researchers are working on developing a cure but for now all I can hope for is a state of remission. Being an independent person, it is often difficult for me to ask for help, but CRPS has changed that and now I have to ask for help often. I am unable to tuck a sheet under a mattress or lift a casserole dish or roasting pan out of the oven. I am unable to lift and/or carry some of the files at work. There are times I am unable to reach over and close my car door with my left hand. I am unable to wear my wedding ring.

When I was researching my options in treatment of Keinbock's, I skimmed over any side effects from any surgical procedures. I had surgery many times during my life and I believed this time would be no different. Knowing what I know now, I have to say that I would still have taken the chance and had the vascularized bone graft.

I will continue to search out new treatment options for CRPS and continue to monitor my right wrist for signs of Keinbock's. Perhaps some day, there will be a cure for both.