A story from Mexico...
I am a young girl born in 1987. I am 1.35 m / 4.42' tall, I weight 55 kg / 121 pounds. l am the only one affected in my family. I have been diagnosed in 1993, Shriners Hospital for children, Los Angeles. I remember that i took many x-rays, not genetic test. I had two surgeries:
1st surgery:
1. 2000
2. Shriners Hospital for childrens, Los Angeles Cal.
3. Straightened left tibia and fibula
4. It was suggested because it where curved
5. I stayed in hospital for 5 days
6. It took 6 months to fully recover
7. I needed constant help because I could not walk or do many things for myself
8. It was useful because it was straightened
9. Next day of my surgery I got up to walk in a walker, it was very painful, later I just did some exercises for myself in bed
10. I would do this surgery again, because when I was a child I didn't like that my legs were curved, and because doctors told me before the surgery that it was just an esthetic surgery, but I noted some time later that I get tired less when I was walking
If I see my legs now I can not imagine having them as they were before surgery, although I have many scars and the recovery was somewhat painful, it was worth it.
2nd surgery:
1. 2006
2. Hospital Guadalajara (Tijuana, Mex.)
3. Lengthened left tibia and fibula and straightened the left ankle
4. It was suggested to me because with the first surgery the left tibia and fibula were shorter than the right and the doctor told me that if I stayed so over time would break my spine, because I used a template to level the size and that cause damage to the spine
5. I stayed in hospital for 3 days
6. 10 or 11 months to fully recover
7. I needed help after the surgery
8. I would do this surgery again, because it was very uncomfortable to use that template to level the size, also there was a high risk that my spine was damaged too.
9. I didn't need rehabilitation.
10. Although it was very painful and uncomfortable, plus I could not do anything for myself (I had to leave school that year), and the recovery time was very long, I can say that I would do it again (I hope no longer needed :P) , only that i would ask the doctor to give me pain medication in higher doses, I really suffered and the dose not made me effect, the pain was constant, since I left the operating room until the end of recovery 10 months later, I could not sleep all the time, but I feel it was worth.
11. I would suggest this surgery, telling my experience and warning about the pain and the time.
12. I remember that the Shriners hospital doctors told me I would need more surgeries in the future, but I do only the necessary, and to try to support as much as I could without surgeries and I think they were right, because every doctor I see says that I need new surgeries, if I accept it, I would have many. Another thing I would like to tell you is that when I was 12 the doctors said I was not going to grow more (i was 1.20 cm.), it depressed me a lot, cried a while, then i accepted it, and years later I realized that I grew 15 cm more thanks to God (now I measure 1.35).
I know that I need it but actually I don't do any follow up, because I really don't know where to go, because here in my country (Mexico) sometimes it is risky, there is a lot of medical malpractice, some doctors just want money and do not care about harming patients, I would like to find a hospital in the United States where they can assist me at a low cost (I live in the Mexico border with U.S.), but i know medical costs are very high in that country.
I only use meloxicam for pain.
I only take it when i have a lot of pain (like every 2 or 3 months).
I do phisical activity 2 or 3 times per month. I feel better since I do some stretching exercises in my bed before I get up in the morning, I have more pain when the weather is cold, the most common pain is in my hip (left side), I only have knee pain like once a year.
I don't practice any sport (I don't like it), only swimming, but actually I don't do it because I don't have time (I used to do it 3 days per week). I can walk around 2 km ( 1.2 miles) without feeling pain. I feel joint stiffness almost every morning, since I can remember. I can climb stairs, but not often. I can swim, while I'm in the water i feel soooo good, but after swimming I feel very heavy and time after my hip hurts a little.
My pain, if 0 is none and 10 is maximum, is hips 9 and knee 8 (not often).
I just use wheelchair when I go to shopping or to a place where I will walk a lot. My last doctor suggested me hip replacement for the future, I think to do it if it's necessary, but honestly it scares me :S I can cross my legs, but not very open :S I don't know if I had depression, but I felt very sad when doctor told me that I was not going to grow more, I've never been to a psychologist, when that happened to me I considered that I was my own psychologist :P Some years later I met God and He has changed my life. God made you as you are for a particular purpose, be happy and enjoy life! :)
1st surgery:
1. 2000
2. Shriners Hospital for childrens, Los Angeles Cal.
3. Straightened left tibia and fibula
4. It was suggested because it where curved
5. I stayed in hospital for 5 days
6. It took 6 months to fully recover
7. I needed constant help because I could not walk or do many things for myself
8. It was useful because it was straightened
9. Next day of my surgery I got up to walk in a walker, it was very painful, later I just did some exercises for myself in bed
10. I would do this surgery again, because when I was a child I didn't like that my legs were curved, and because doctors told me before the surgery that it was just an esthetic surgery, but I noted some time later that I get tired less when I was walking
If I see my legs now I can not imagine having them as they were before surgery, although I have many scars and the recovery was somewhat painful, it was worth it.
2nd surgery:
1. 2006
2. Hospital Guadalajara (Tijuana, Mex.)
3. Lengthened left tibia and fibula and straightened the left ankle
4. It was suggested to me because with the first surgery the left tibia and fibula were shorter than the right and the doctor told me that if I stayed so over time would break my spine, because I used a template to level the size and that cause damage to the spine
5. I stayed in hospital for 3 days
6. 10 or 11 months to fully recover
7. I needed help after the surgery
8. I would do this surgery again, because it was very uncomfortable to use that template to level the size, also there was a high risk that my spine was damaged too.
9. I didn't need rehabilitation.
10. Although it was very painful and uncomfortable, plus I could not do anything for myself (I had to leave school that year), and the recovery time was very long, I can say that I would do it again (I hope no longer needed :P) , only that i would ask the doctor to give me pain medication in higher doses, I really suffered and the dose not made me effect, the pain was constant, since I left the operating room until the end of recovery 10 months later, I could not sleep all the time, but I feel it was worth.
11. I would suggest this surgery, telling my experience and warning about the pain and the time.
12. I remember that the Shriners hospital doctors told me I would need more surgeries in the future, but I do only the necessary, and to try to support as much as I could without surgeries and I think they were right, because every doctor I see says that I need new surgeries, if I accept it, I would have many. Another thing I would like to tell you is that when I was 12 the doctors said I was not going to grow more (i was 1.20 cm.), it depressed me a lot, cried a while, then i accepted it, and years later I realized that I grew 15 cm more thanks to God (now I measure 1.35).
I know that I need it but actually I don't do any follow up, because I really don't know where to go, because here in my country (Mexico) sometimes it is risky, there is a lot of medical malpractice, some doctors just want money and do not care about harming patients, I would like to find a hospital in the United States where they can assist me at a low cost (I live in the Mexico border with U.S.), but i know medical costs are very high in that country.
I only use meloxicam for pain.
I only take it when i have a lot of pain (like every 2 or 3 months).
I do phisical activity 2 or 3 times per month. I feel better since I do some stretching exercises in my bed before I get up in the morning, I have more pain when the weather is cold, the most common pain is in my hip (left side), I only have knee pain like once a year.
I don't practice any sport (I don't like it), only swimming, but actually I don't do it because I don't have time (I used to do it 3 days per week). I can walk around 2 km ( 1.2 miles) without feeling pain. I feel joint stiffness almost every morning, since I can remember. I can climb stairs, but not often. I can swim, while I'm in the water i feel soooo good, but after swimming I feel very heavy and time after my hip hurts a little.
My pain, if 0 is none and 10 is maximum, is hips 9 and knee 8 (not often).
I just use wheelchair when I go to shopping or to a place where I will walk a lot. My last doctor suggested me hip replacement for the future, I think to do it if it's necessary, but honestly it scares me :S I can cross my legs, but not very open :S I don't know if I had depression, but I felt very sad when doctor told me that I was not going to grow more, I've never been to a psychologist, when that happened to me I considered that I was my own psychologist :P Some years later I met God and He has changed my life. God made you as you are for a particular purpose, be happy and enjoy life! :)