Hello,
I’m engaged to a wonderful man who has CCD. He is 33 years old and is starting to experience a lot of pain in his hips and lower back. He has also lost most of the flexibility in his legs. I just wanted to know if any of the adults with CCD here are experiencing this as well?
Also, does anyone know any specialists in California or New Jersey/New York area?
Thanks.
As someone who lives with CCD and can relate. Does he take Glucosomine/Chondroiten. I hate to sound like a commercial but this stuff can’t be over stated the benefit for those of us with bone issues. This product helps joints in ways that no other product in my knowledge does. It lubricates, can actually make new cartilage, and heals inflamed joints. Is not a drug but just more of the natural stuff we already produce in our bodies.
I have bad legs and a ruptured disk in my lower back just before my tail bone.
Anita
I experience all kinds of diffrent pain in my joints,
back, shoulders neck, hips, arms go numb sometimes.
One thing that helps alot is Chirocractors, heat and
rest. You gotta take time to rest. I am an R.N and I
have C.C.D. and my child who is 4 does not have it.
Thank god. I must have been a sponanious case.
Althought my mom was missing a few permanent teeth.
She retained baby teeth. That is the only similarity.
Pain is a constant problem.My boyfriend does’nt
understand sometimes. I wish he could talk to your
fiance. No specialist that i know of. i’m from
Califorina originaly. Now i live in Miami Florida.
Most M.D.'s have never even heard of it. I’m missing
my right clavical, Several teeth, and have scoliousis
of the spine. I live a great, fulfilling life and I
try not to let my defects stop me. I skateboard, play
with my kid, ride on my boyfriends Harley. At times I
over do it and am in pain layed up. But us with C.C.D.
manage. We’ve had it our whole life. Yes lately its
getting worse (pain), but the only thing you can do is
therapy. As far as i know heres my myspace address
www.myspace.com/birdy1313 or my email badbyrd777@yahoo.com
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Pari, I experience all kinds of diffrent pain in my joints,
back, shoulders neck, hips, arms go numb sometimes.
One thing that helps alot is Chirocractors, heat and
rest. You gotta take time to rest. I am an R.N and I
have C.C.D. and my child who is 4 does not have it.
Thank god. I must have been a sponanious case.
Althought my mom was missing a few permanent teeth.
She retained baby teeth. That is the
only similarity.
Pain is a constant problem.My boyfriend does’nt
understand sometimes. I wish he could talk to your
fiance. No specialist that i know of. i’m from
Califorina originaly. Now i live in Miami Florida.
Most M.D.'s have never even heard of it. I’m missing
my right clavical, Several teeth, and have scoliousis
of the spine. I live a great, fulfilling life and I
try not to let my defects stop me. I skateboard, play
with my kid, ride on my boyfriends Harley. At times I
over do it and am in pain layed up. But us with C.C.D.
manage. We’ve had it our whole life. Yes lately its
getting worse (pain), but the only thing you can do is
therapy. As far as i know heres my myspace address
Yes I have experienced lots of pain in my lower back, shoulders, hands and legs. It can be quite frustrating especially when you are seeing doctors, specialists and they can only tell you to take pain killers.
I have been able to reduce the pain by getting orthodics, taking very high-quality multi-vitamins and supplements (like Anita said previously), and just making sure I eat a healthier diet. You really need to be your ‘own doctor’ and treat yourself like gold!
You find out by trial and error that certain things cause more pain than others (for me riding my bike which I love but can’t really do anymore!) but I think it is very important to find a few things (eg swimming) that even though you may not love to do it will benefit your body (I go hiking). For us with CCD it is even more important to stay in shape, exercise and eat well as our body cannot take the abuse as easily as others. I learned the hard way and now my son who has CCD who is 16 is starting to have to deal with a lot more pain and its hard to see him have to live with this.
I wish you and your fiancé all the best!
Evonne
pari cleidocranial-dysplasia-cpt6929@lists.careplace.com 11/27/2007 8:43 PM >>>
I have to take my 5 yr old to see a nerosurgoen next week due to spine and abnormal dimples in his lower back I will let you know what he tells me.
Evonne cleidocranial-dysplasia-cpt6929@lists.careplace.com wrote:
Momof3,
Hello, usually the dimples is a sign of tethered spinal cord. This is what I have. If you want to talk more about it contact me again. Where are you located what state?
Pam Miotke
momof3 cleidocranial-dysplasia-cpt6929@lists.careplace.com wrote:
Hi Pari,
I have CCD and have dealt with a lot of hip and lower back pain over the years. I had my hip reconstructed at the age of 8, so I have xrays every few years to keep track of what is going on with the bones. However, the best help for me has been stretching exercises to stretch the muscles and ligaments in the lower back and legs. Just simple leg stretches help so much. I swim in the summer for exercise, and walk in the winter. Swimming is best. Stretching and good chiropractic care are essential with CCD. However, I would definitely recommend your fiance have xrays with an orthopedist to know what is going on in case there is a herniated disk or osteoarthritis in the hips before taking on an exercise program. Blessings, Sue
My 43 year old daughter with CCD starting suffering with lots of pain about 9 years ago - mainly on her left side from shoulder to foot. In the beginning they thought she might have had a stroke because of the numbness.
She was originally seen in CA as a child and wasn’t diagnosed until age seven because of teeth problems, even though there were some concerns at birth - we were not aware that there could be more problems as she got older. She was recently seen at Riley’s Children’s Hospital in Indianapolis, IN by a geneticist and they really weren’t able to help her but did state that they felt that the 3 babies lost in the second trimester could have been due to CCD - who knows as she has 2 children but all most lost the last one before birth. Also they stated that the hearing loss she is now suffering from is most likely from CCD.
The pain has continued to intensify over the last few years and she has been seen by many specialists (ortho and neruo)
and is on many different prescriptions - some days she isn’t able to make it to work because of pain and numbness - lucky enough at this time to work for her father as she can no longer work as a beautician.
She recently was treated for cysts on her sprine but again they can’t say the problem is connected to CCD.
When she isn’t experiencing severe pain she is a fairly active person.
My advise is to keep trying to find doctors that know what they are dealing with but am sorry to say I don’t think there are too many of them though they know more today than they did 43 years ago.