Name : Sandra S. McNeil
E-mail : email@example.com
Adult: 51 years old
City, State: Louisville, Kentucky
Areas of body affected: Right side from hip down
Hello, my name is Sandra Stephenson McNeil. I prefer "Sandy." I am a 51 year old woman living in Louisville, Kentucky. I have been dealing with the effects of Melorheostosis for 40 years.
I was born and raised in Louisville, Kentucky. When I was in the seventh grade (around age 11 or 12; approximately 1964), I had trouble running laps in gym because my left ankle would hurt so much. Since my father was in the service, my parents took me to Army Ireland Hospital in Fort Knox for a checkup.
When I spoke to the doctor, I also told him that I had been waking up often during the night with shooting pains in my right leg. We never again mentioned my left ankle and it never bothered me again. They took lots of x-rays and then apparently called some sort of staff meeting of the hospital. When the doctor came back down and found me running around the waiting room, he very sternly told me to sit down and not to get up again. That’s when my whole life changed. At that time, they diagnosed me with Fibrous Dysplasia, a disease where the bones resemble a sponge on x-ray and are apparently very fragile. I went from tom boy to couch potato overnight. Since they felt the bone was so porous, they placed me in a full weight bearing brace saying that the bone could break very easily and if it broke, I would be casted for quite some time. I wore that awful brace and others for two or more years, used crutches and became a great hopper. I was followed at Army Ireland for the next couple of years. When I finally got rid of the brace, for the next few years, my activities were only somewhat limited. But as time went on, I had less and less movement in my ankle and any accidental bumping or sideways movement would cause tremendous pain.
At around age 19 or 20, an orthopaedic surgeon in Louisville, Kentucky, Dr. Coy, went in and "cleaned out" the bone in my ankle and took a biopsy to try to give me some relief from the pain and to give me more movement. A sample of the diseased bone from my right ankle was sent to the Mayo Clinic. The diagnosis came back as Melorheostosis. At that time there was almost no research that could be found on the subject. (When asked the cause, Dr. Coy, who had a wonderful sense of humor, said “a cosmic ray went through your Mom when she was pregnant.” I took that to mean nobody knows.)
I followed with Dr. Coy for quite a few years. I remember at one point he gave me steroid shots in my ankle which did help the pain for a short time. Unless accidentally knocked, my pain was not too unbearable and was something that I just learned to live with. I walked with a minor limp, but it was not bad enough to keep me from waiting tables and bartending. I even enjoyed a little disco dancing, racquetball and snow skiing.
At 26, I had a successful pregnancy with a c-section birth (nothing to do with my bone disease). I have a lovely son whose name is Ian (now 24 years old). As far as we know, he does not have a trace of the disease.
Somewhere in my mid to late twenties, I had what my doctor thought was a stress fracture. The doctor (in Detroit, Michigan) went in and did an exploratory on my right ankle. During the surgery he damaged the nerves to the top of my foot. He casted me for quite some time and did not order physical therapy which I felt I needed after I came out of the cast.
It was around this time that I feel the effects of the disease were really starting to impede my activities. My leg had a sharp outward turn, my ankle was slowly filling itself in and was close to only 10 percent movement, my right foot was somewhat disfigured, I had a flexion contracture of the muscles in my front hip & groin area, pulling my leg up and my pelvis was tilted down and in, causing quite a bit of pain in my back. Obviously, I walked with somewhat of a limp. One doctor (I believe he was at Henry Ford in Detroit) ordered intensive physical therapy with a soft tissue expert. She spent quite a bit of time on me and did help me some. I always carried anti-inflamatories and had regular prescriptions or samples from the doctor.
I once asked the doctor at Henry Ford if he had ever seen anyone else with Melorheostosis. He said he had seen one case with it in the end of the finger. I just wanted to meet someone with the same disease I had. I used the name “Melorhe” as my internet name just hoping that someone would notice it and ask me about it. At that time, the doctor told me I should start a website. He said “if you don’t do it, no one will.”
I moved back to Louisville from Detroit around 1992 and treated with a Dr. Seligson. He was the only doctor I had ever seen who walked into the room, looked at the x-ray and said, startled, “that’s Melorheostosis.” He used my x-rays to stump his students. After some treatment with him (steroid shots and physical therapy) he felt I should start to consider a hip replacement and sent me to Dr. Lawrence Shaper at Ellis Badenhausen, http://www.ebepsc.org/. Dr. Shaper took interest in my case and dug deep and found better articles on Melorheostosis than I had seen. (At one point he mentioned it appears that Melorheostosis seems to stop or even regress after a certain point as you age). I had always been told I was too young for a hip replacement and in the beginning, he echoed that sentiment. In my early to mid 40's he gave in and we started talking seriously. We had a plan to do the surgery when he came across a doctor that was putting in a different hip. Dr. Shaper suggested I should check into it. After more research, some planning and an appeal with my insurance company, I finally made my way out to the Joint Replacement Institute (JRI) in Los Angeles, California for a metal on metal surface hip replacement. This replacement has a larger ball which minimizes the chances of displacement and “caps” the femoral head which preserves the bone for future surgeries instead of the stem type which more invasive. See http://www.jri-oh.com/hipsurgery/Hip_Types.asp#surface.
I flew out to California with my sister, Nancye, on a Sunday, had my first meeting with Dr. Amstutz, http://www.jri-oh.com/meetstaff/Staff.asp and his Canadian fellow, Dr. Beaulé (now an associate at JRI) on Monday and had my replacement surgery on Tuesday. I was told they had to make special tools to be able to drill into my bone. They also did a muscle release of the contracture. After my surgery, Dr. Amstutz said that my hip was such a mess he couldn’t believe I had walked into his office under my own steam. After a reasonable recuperative period, I now have a better gait and much less pain. My leg is no longer turned out as it was before the surgery. The TV news in Louisville came out and did a "before and after" story on me, but it was because of the special hip replacement, not because I have Melorheostosis. I have continued to see Dr. Amstutz once a year since my surgery as he comes out to this side of the world (Chicago or Nashville) to see his clients and I am in a study group for the prosthesis.
I am still walking with a limp, but I am walking. I believe my hips are a little more even although I can’t lay flat on my back or my stomach because of the contracture. My ankle has almost totally fused itself and so there is less pain. My ankle looks swollen (but isn’t) and is tender to the touch on the outside of the leg from the ankle bone up about 4 inches. Because of this, my Achilles tendon is tight and my calf muscle is small. My foot and toes are somewhat disfigured (with thickened toenail on one toe) and I could wear about ½ size smaller shoe on my right foot.
One thing I have not mentioned is that I do have some of the “thickened skin” places. I have had some removed, but they do tend to grown back a bit. Luckily, mine are not in a visible place. I haven’t used pain relievers or anti-inflamatories, except for occasionally, in years. Long periods of standing or walking are painful and can cause pain throughout the night. I try to catch it early and have been using Aleve. Although with the reports out about it lately, I am looking for something else.
I used to be told that there weren’t many cases of Melorheostosis (approx. “60 reported in the last 100 years”), and that I had the “worst case.” Obviously, from a reading of the histories on this site, there are more of us out there (even one in my city) and I am certainly not the worse case.
I am happy to talk to anyone who might have questions and am very interested in getting involved with the group. I will definitely show up in St. Louis. I can’t believe I have already missed two conventions!!
Bless the creators of this organization and the site for having the strength, dedication and knowledge to start the ball rolling and continue in such a successful way. Bless the doctors and the researchers who are dedicating their time to help those of us with this little known disease.
There are so many of us out here that finally feel there could be answers to lifelong questions or that someone out there actually knows how we feel.
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