
| Lisa's Kienbock's Disease Story |
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My name is Lisa Mathias. I am a 28 year old female, and at the time I type this, 3 months post op for Kienböck's Disease. I had a STC fusion on July 3rd, 2002, after 2 years of off and on pain. I never went and sought any medical care for my wrist prior to June 1st, 2002. The pain became so unbearable, and I was so sure I had Carpal Tunnel, that I was ready to get the simple surgery for Carpal Tunnel and move on with life... Well story of my life is, things never turn out simple. I am a housewife and mother, and also a smoker (at the time). I was very much in shape, as I had just won the battle of the bulge and had picked up many new hobbies, such as bike riding, jogging, and dance. For many years after having my son, I was 220 pounds. I did not have a healthy diet or many activities in my life. I was just getting ready to start a new me. I was back to a size 6, healthy, happy, and getting involved with adopting a child. I had never been diagnosed by a doctor with Carpal Tunnel Syndrome. Truth is, I had not seen a doctor for my arm since I was 12 years old and had fallen on my right outstretched arm at the skating rink and fractured it. Although I have had several family members with carpal tunnel, and I had also read that carpal tunnel pain can be more intense during hormonal changes, and not having any medical insurance, I chose to put off going to a doctor for it as long as I could. My husband and I were trying to have another child, and I had become pregnant twice, miscarrying both times during these 2 years, medical bills enough. I was going through hormonal overload. The pain did seem to be a lot more intense during this time. As time would pass, I would have days of normal usage, with no pain. So, I kept clinging to the hope that it would keep getting better, and at times, it did seem so. Then came the depression from the miscarriages, days when I couldn't ride my bike due to pain, and of course, the weight started to come back as well. I was having a lot of sleepless nights, trying to find the right position to sleep in to help ease the pain. There were even times the pain was so intense that I thought that it needed to be broken and reset. I finally gave in and went to see a doctor when I started noticing I was having some swelling. He sent me home with some pain meds and anti-inflammatory medication. I was able to get by for another 6 months or so. In May 2002, I went to the store to get some bleach and other household items, while unloading the car, I must have picked up the bottle of bleach wrong. I felt my wrist pop, and had a lot of pain afterwards. I was used to my wrist popping, as it popped all the time, and at times, I would pop it, and would get a bit of relief from the pain, but this time was different. The pain surged up my forearm, and lasted longer and more intense then any pain before. Well I just put on my wrist brace that I had purchased at a local drug store, and took some pain medication and tried my best to keep going. As the night wore on, it became clear I needed to be seen by an orthopedic doctor, so the next morning I called and made the appointment. I wasn't able to be seen for a week. During this time, I wore my wrist brace and took it easy with my wrist, although it was the most pain I had ever had with it. It never hurt this bad when I fractured it as a child. In June 2002, I was seen by my local orthopedic doctor. The first thing he did was an x-ray. He came into the room and told me I had Kienböck's Disease, and that he wouldn't touch it. Scared me to death. He went on to try and explain it, and why he couldn't help me, but I really didn't hear much after he told me I had a DISEASE. It was a good thing my husband was with me. He made for a great second pair of ears. I was referred to a doctor over an hour and a half away, to be seen the next day. After coming back home and calming down, I decided it was time to research and learn as much as I could for my appointment the next day. Honestly, the more I read about Kienböck's Disease the more confused I became, not to mention, it seemed as though, no one out there had had a good outcome. So I went to the next appointment, more confused and more scared then ever. After meeting with the doctor and talking with him in depth about all this, I was feeling a lot better. He took the time to talk to me and explain it in terms I could understand. I was very impressed, as not many doctors will take time to really talk to you as a person, and not a patient. He told me I was in stage 3, and what that meant, along with my options. My options at this point were, to get a STC fusion, a STT fusion, a PRC, a radial shortening, or to wait it out as long as I could bear, and risk a total fusion. I opted for the STC fusion, lunate removal, with bone graft taken from the radius bone, based not only on me, but also on his record as to what he has had more success with as well. The surgery was planned for July 3, 2002, so during the next few weeks, I would prepare as much as I could for the months to follow. The surgery was an outpatient surgery that would last a total of an hour and a half. All together I was in the hospital for 4 hours. I had a follow up appointment for the following week, to remove stitches and be casted for a month. Week 3 of the cast I had had all I could take of the cast, I was having major itching, my skin was peeling off in sheets under my cast, and I felt as if I had a raw spot near the base of my thumb. So off came the cast. Needless to say, I shouldn't have removed it against doctor's orders, but I did, and lucky for me, I didn't have an accident that could have resulted in another surgery. I had several follow up appointments, to be x-rayed to see how the strength and bone grafting was doing, and all has checked out fine. I never had any physical therapy, just worked on exercises at home to build it back up. I now have grip strength of 68 pounds and limited movement, but movement without pain, and that was what I was after. Needless to say, I have had to change a lot of things in my life to be more suited for me and my wrist, but as it stands 3 months post op, I am having no pain, I have accepted limited movement, and am now back to doing all the things I enjoy. I had my last follow up appointment last week, the doctor released me after I gripped 68. My grip strength was 32 at last appoinment a month ago. Told me I was well on the right path, and that if I needed him, to call. He did tell me that for the rest of my life..if it is to heavy, don't lift it, but going back to my bike riding was fine. He has never had to do a second surgery on anyone he has done the STC fusion on, but there are never any guarantees, that a traumatic fall, could result in a PRC or Total fusion to follow. So I have been busy these past few weeks doing yard work and housework. Doing what I do best, pushing my limits. I have to say I am more then happy with how my wrist is holding up, and can still tell it is geting better everyday. Although it is always in the back of my mind, and if I do happen to forget about my KD, it reminds me, when I go to do certain things, like scratching my back...LOL I have modifed alot of things in my life, and have accepted it, so it makes geting on with things so much easier. Not having any pain also makes it easier. I wish I could wish everyone's KD pain away. I would do it in a second if I could. No one ever really understands the type of pain it is, unless they have had to deal with it. I dealt with it for over 2 years. Sometimes I feel guilty about having such a good out come, and like I no longer belong here, but then I think about how I felt when I joined this group. I didn't know anything, and all I had to go on really was all the bad stories that people have had to share. So I made up my mind I was not going to be another bad story. I was going to beat this, so there would be good a story to share. I am not saying that I am cured,(even though I no longer have a lunate) but for the time being, I feel like I have beat this, and have become a much stronger person becuse of it. I do pray everyday that I will not have that traumatic fall that could send me back for another surgery, but have made up my mind that if it happens, I will go total fusion, and beat it once more!
Click here to see Lisa's STC Fusion X-rays |
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| Comments or questions in any way concerning Kienbock's Disease are best directed to the Yahoo! Kienbock Disease Support Group. |
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