Forums
New posts
Search forums
What's new
New posts
New profile posts
Latest activity
Internet Search
Members
Current visitors
New profile posts
Search profile posts
Log in
Register
What's new
Search
Search
Search titles only
By:
New posts
Search forums
Menu
Log in
Register
Install the app
Install
Forums
Parent Support Forums
General Parenting
My son was diagnosed with idiopathic chondrolysis
JavaScript is disabled. For a better experience, please enable JavaScript in your browser before proceeding.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an
alternative browser
.
Reply to thread
Message
<blockquote data-quote="foreveryoung1895" data-source="post: 627927" data-attributes="member: 18064"><p>Hi everyone,</p><p></p><p>My name is Ainslie, & I am 18 years old.</p><p></p><p>Two years ago, in my first year of college, I was diagnosed with Idiopathic Chondrolysis (ICH), in my right hip. Before the official diagnosis, I spent a total 6 weeks in 3 different hospitals. The onset of my pain was immediate, and I had no previous injury that could have triggered it. I live in Tasmania, Australia, and had to be transferred to a children's hospital on the mainland, as no hospital where I am from had ever treated a patient with ICH. Neither had the hospital on the mainland. I had limited mobility, was unable to move or weight bear on my right leg, and had to use crutches or a wheelchair to get around the hospital.</p><p></p><p>All the initial tests I had, were inconclusive, so I was actually sent home from the first hospital, after only 11 hours, even though I couldn't walk. I spent over a month in the second hospital, and was moved to 7 different rooms during my stay. The doctors were unable to diagnose me there, either, but some of the diagnoses they investigated, included tumors, blood clots, cancer, forms of arthritis, and even mental health issues. As they could not find any physical proof of a reason for my symptoms, the doctors suggested to my parents that I was extremely stressed and this was manifesting itself into physical symptoms.</p><p></p><p>I eventually underwent a capsulectomy, and release of the psoas tendon, in 2012. This helped for a few months.</p><p></p><p>For the next year, I had to have check-ups at the hospital every 2-3 months, which included MRIs, blood tests, x-rays, & even a bone scan.</p><p></p><p>Just over a year later, I was also diagnosed with Femeroacetabular Impingement (FAI) in both my left and right hips. FAI is a bone deformity, where the head of the femur, grows incorrectly, causing nodules to form, and disrupt the natural movement of the hip joint. My orthopaedic surgeon suggested to have surgery on both my hips, to try and shave off the nodules. I have also been assessed by the Rheumatology Department, regarding possible arthritis related symptoms, but all the investigations have failed to indicate this condition.</p><p></p><p>In my next trip to the hospital, a few months later, my latest MRI scan showed that I had barely any cartilage in my left hip, so it was almost bone on bone, & my right hip showed massive amounts of cartilage deterioration. He said that any further surgery to attempt to fix the current damage, would be pointless. My only option left, is to have both my hips replaced as soon as possible. It is unlikely that hospitals in Tasmania would support hip replacements in such a young person, and the hospital I was being treated would also be reluctant, as I am too old for their waiting list, as it is a children's hospital. I am now being transferred to the largest hospital complex in the Southern Hemisphere, and am currently waiting for a letter from them, to say that I can have my first hip replacement done. </p><p></p><p>I have been living in constant pain for 2 years. I have been on several different medications, on and off, with none of them being able to help subdue the pain. I am unable to drive a car at this point in time, as it hurts too much to do so. I have been able to walk without the use of crutches or a wheelchair, for over a year now, but will need to use them for a few months, after my hip replacements. </p><p></p><p>Since I was diagnosed, I have been looking for someone else who has ICH, to know that I am not alone in my suffering. There is no where in Australia that houses support groups for people & their families, who suffer form ICH. One day, I would like to meet someone in person, who has gone through what I have, because even though the pain can be really bad some days, it does get better. <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite1" alt=":)" title="Smile :)" loading="lazy" data-shortname=":)" /></p><p></p><p>Sorry if this is long or boring, but it has been 2 years, without having anyone to talk to, who understands this disease... so, thanks for listening <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite1" alt=":)" title="Smile :)" loading="lazy" data-shortname=":)" /></p></blockquote><p></p>
[QUOTE="foreveryoung1895, post: 627927, member: 18064"] Hi everyone, My name is Ainslie, & I am 18 years old. Two years ago, in my first year of college, I was diagnosed with Idiopathic Chondrolysis (ICH), in my right hip. Before the official diagnosis, I spent a total 6 weeks in 3 different hospitals. The onset of my pain was immediate, and I had no previous injury that could have triggered it. I live in Tasmania, Australia, and had to be transferred to a children's hospital on the mainland, as no hospital where I am from had ever treated a patient with ICH. Neither had the hospital on the mainland. I had limited mobility, was unable to move or weight bear on my right leg, and had to use crutches or a wheelchair to get around the hospital. All the initial tests I had, were inconclusive, so I was actually sent home from the first hospital, after only 11 hours, even though I couldn't walk. I spent over a month in the second hospital, and was moved to 7 different rooms during my stay. The doctors were unable to diagnose me there, either, but some of the diagnoses they investigated, included tumors, blood clots, cancer, forms of arthritis, and even mental health issues. As they could not find any physical proof of a reason for my symptoms, the doctors suggested to my parents that I was extremely stressed and this was manifesting itself into physical symptoms. I eventually underwent a capsulectomy, and release of the psoas tendon, in 2012. This helped for a few months. For the next year, I had to have check-ups at the hospital every 2-3 months, which included MRIs, blood tests, x-rays, & even a bone scan. Just over a year later, I was also diagnosed with Femeroacetabular Impingement (FAI) in both my left and right hips. FAI is a bone deformity, where the head of the femur, grows incorrectly, causing nodules to form, and disrupt the natural movement of the hip joint. My orthopaedic surgeon suggested to have surgery on both my hips, to try and shave off the nodules. I have also been assessed by the Rheumatology Department, regarding possible arthritis related symptoms, but all the investigations have failed to indicate this condition. In my next trip to the hospital, a few months later, my latest MRI scan showed that I had barely any cartilage in my left hip, so it was almost bone on bone, & my right hip showed massive amounts of cartilage deterioration. He said that any further surgery to attempt to fix the current damage, would be pointless. My only option left, is to have both my hips replaced as soon as possible. It is unlikely that hospitals in Tasmania would support hip replacements in such a young person, and the hospital I was being treated would also be reluctant, as I am too old for their waiting list, as it is a children's hospital. I am now being transferred to the largest hospital complex in the Southern Hemisphere, and am currently waiting for a letter from them, to say that I can have my first hip replacement done. I have been living in constant pain for 2 years. I have been on several different medications, on and off, with none of them being able to help subdue the pain. I am unable to drive a car at this point in time, as it hurts too much to do so. I have been able to walk without the use of crutches or a wheelchair, for over a year now, but will need to use them for a few months, after my hip replacements. Since I was diagnosed, I have been looking for someone else who has ICH, to know that I am not alone in my suffering. There is no where in Australia that houses support groups for people & their families, who suffer form ICH. One day, I would like to meet someone in person, who has gone through what I have, because even though the pain can be really bad some days, it does get better. (: Sorry if this is long or boring, but it has been 2 years, without having anyone to talk to, who understands this disease... so, thanks for listening (: [/QUOTE]
Insert quotes…
Verification
Post reply
Forums
Parent Support Forums
General Parenting
My son was diagnosed with idiopathic chondrolysis
Top