In 2002, my daughter was playing indoor soccer and wound up breaking her wrist. About the time she was having her cast removed, I started hurting again, but the pain wouldn't go away, and it was pretty excruciating. I wasn't sleeping at night and to be very honest, I probably was not an extremely nice person to live with.

When I took my daughter to the orthopedist to have her cast removed, I asked him what he thought my pain might be. Luckily for me, he took an x-ray, and also lucky for me, he knew it was Kienbock's. He wouldn't treat me, but immediately called down to the hand specialist on the floor below who saw me right away. He explained what Kienbock's was and at that time recommended that I have a fusion. To be honest, I don't even remember what stage he told me I was in.

I went home with a brace, and of course, like everyone else, I looked up Kienbock's on the internet and found the Yahoo Groups Kienbock Disease Support Group. At the time, I freaked out reading all the emails and what others were going through, so instead of staying informed, I hid my head in the sand and told myself that those things weren't going to happen to me. I quit reading the emails and eventually quit the list. Little did I know, how important this group would become to me.

At my next appointment, I wound up seeing the partner because the doctor who had originally seen me was ill. He felt that I was too young for a fusion (I was 47 at the time) and that a radial shortening might work for me. I liked his thinking and felt that I could trust him, and so I scheduled surgery for June of 2002.

I had the radial shortening done and almost immediately did not have the same pain that I had had before. Obviously I had post surgical pain but that gnawing, miserable feeling was gone! I was in a waterproof cast (which I highly recommend, especially during the summer) from June until October. Unfortunately, my bone wouldn't knit together, so I was give a bone stimulator in late August and by October, my bone had finally healed. In October, I went back to work and I felt great. By December, I was able to bake Christmas cookies, go shopping, wrap gifts and pretty much do what I did before. I also was able to do my genealogy (which is another one of my passions) and the following spring, I was able to tend to my herb garden. Life was good again!!

Unfortunately, my Mom fell around that time and shattered her shoulder, and not long after that she developed Parkinson's Disease, so I took over caring for her, which meant lifting her out of chairs, etc. I still did well and only occasionally would I have some pain. I did wind up having a couple of cortisone shots but only when I was really over using my hand.

In March or April of 2005, life changed again. My wrist started to really hurt again, to the point where again I wasn't sleeping at night and feeling really miserable. If I carried groceries or lifted my Mom, or cleaned my house, it was a guarantee that my wrist would swell and I'd be in tears at the end of the day. My left hand also started hurting which I thought was due to overuse. Aside from the normal KD pain, I had burning in both my palms. It felt like my wrists were on fire. I called the surgeon who had done the radial shortening, but again, unfortunately, I had changed insurance plans and stupidly chose an HMO. He didn't accept the plan that I had so I went in search of another hand specialist who was on the plan.

I finally got an appointment in April and pretty much thought that he would tell me I had tendonitis and all I would need would be some good old cortisone again. He took x-rays, and after reviewing them, he told me my lunate was collapsing and I would need to have a PRC (Proximal Row Carpectomy). That pretty much threw me for a loop and when I got home, I again joined the list to find out exactly what a PRC was. I was extremely glad I did, because if you haven't experienced KD pain, it's really hard to understand how one little bone can cause so much pain. I learned a lot and also had many "pity" parties. The support the group gave me was tremendous and I don't know how I wouldn't have lost it if it wasn't for all the good people on this list.

To be honest, I didn't feel comfortable with this doctor, so I again went back to the insurance plan and found another doctor in the same area. He really had no clue what Kienbock's was and after looking at my x-rays, he went to confer with his partner, who felt that I should just grin and bear it. Obviously, he knew even less about KD! I knew I couldn't live like that so I went back to the first doctor.

Well, the only thing I can honestly say is "trust your gut instinct" when choosing a doctor. I asked if he could do a wrist replacement and his answer was that he didn't think that was a good idea because they only last about 10 years. If I was older, he would consider it. He really didn't give me any alternatives, just PRC or STT fusion. He felt that the burning pain was due to cysts in my wrist, but other than having a CT scan never really paid attention to what I was telling him.

The day of my surgery, he proceeded to hand me a paper to sign that stated, if he felt a full fusion was necessary that I would agree to let him do it. Stupidly, I signed it. At that point, all I wanted was to get out of pain, and be able to do the things I could do before, which included caring for my Mom. I told him that and he told me that with a full fusion I would have difficulty doing some things that required bending the wrist, but that I would have no pain and it would be stronger than before.

I repeat "trust your gut instinct when choosing a doctor". I was never really comfortable with him and I should have listened to my intuition. To make a really long story longer, I had the fusion done and woke up in recovery in a lot of pain. They kept me overnight at the hospital so that they could control the pain with stronger meds. They gave me Dilaudid, which personally didn't do anything. I was still in pain and itching like crazy. I did have great nurses, who gave me numerous ice packs and pillows to keep it elevated but the pain and itching wouldn't go away so I pretty much spent the entire night watching TV and trying to scratch.

I went home the next day, and was pretty miserable. My fingers, hand, and forearm swelled and the bruising was really strange. It looked like tiger stripes. I elevated, iced, rested and did absolutely nothing but watch TV. I was not a happy camper at all. About a week later I went to the doctor and had the stitches removed. I knew it was going to look bad but had no clue how bad it would be! I can't sew a stitch, but I think I could have done better than what he did.

By February I was able to go back to work.

To be continued.....