View Full Version : 20yrold son infantile scoliosis has chest pain
8th August 2005, 06:37 PM
I am new to this, not sure I am in right thread. My son Matt does not have audible speech so this is a guessing game. Three years ago he developed episodes of chronic chest pain. Now CT scan reveals "severe dextroscoliosis with deformation of the cardiopulmonary configuration and diminished lung volumes".
Had harrington rods twice, first one got infected due to trauma, had bone graf using a rib. What test can anyone suggest further? He has had extensive GI testing. Please help.
Thanks you, HelenH
8th August 2005, 06:53 PM
Hi Helen, and welcome! :welcome:
I'm so sorry to hear that your son is having problems. Hopefully we will be able to point you in the right direction as to where to go for further help as it really sounds like he needs to be seen and properly assessed by a specialist.
Where in the world are you? Is Matt currently under the care of a scoliosis specialist, and if not, how long has it been since he last saw one? Have you any idea of the size of his curve (in degrees)? How old was he when he was diagnosed, and how old was he when he had his operations? Do you know what parts of his spine are fused?
Sorry for asking so many questions, but they'll help us to understand more about Matt's case :)
9th August 2005, 11:00 AM
What the CT scan means is that he has a large curve to the right (dextroscoliosis) in his thoracic region, which has changed the shape of the chest and reduced the amount of room for his lungs, so his lung capacity is low. There's a great picture that's been shown in one of the other forums here, that shows how the shape of the ribs changes, so I'll try to find that and post it here.
I'm really sorry to hear that he's having such problems, but as Toni has said, we'll help as much as we can.
9th August 2005, 01:01 PM
Dear Helen, Welcome to the site. We will all try to help you out. Just thought I'd say I am the queen of NO lung function here. My lung function is currently around 15%. Which is scarey especially if I get a cold or pneumonia etc. I am on full time oxygen but I also am very careful about exposure to colds etc. The doctor has told m to stay out of school and churches and the doctor's office so I won't be exposed to germs. My chest tightens up and hurts a lot. I try to slow down breathe deep and relax. I have untreated scoliosis with really big curves and I'm 54 years old and still here to talk about it. Have your son evaluated and I'll bet they can help you out surgically or prehaps with bracing. Make the most of his lung function NOW. Exercise or singing or anything that gets the air moving will help. My chest hurts more if I have been lazy and rested it too much. Let us know how your son does and tell us about the curves etc.
9th August 2005, 06:19 PM
I recognise you from another forum.
If I recall correctly your son's scoliosis is approx 120 deg, quite similar to my own.My spine is fused with bone graft only and does not have any instrumentation.
I hope you don't mind if I ask a few questions Helen.
Can your son remain upright in his wheelchair?
Has the curve deteriorated since his last surgery?
At 120 degrees and with muscle paralysis, his breathing is very vulnerable and really needs the expert care of a pulmonary physician.
Also if the fusion isn't solid or if there us a break in the fusion, this can produce quite an amount of pain.Is he vulnerable to chest infections?
I can't really guess why he feels so much pain in his chest area, but some scoliosis patients complain about severe pain and inflammation within the muscles between the rib cage.Perhaps the pain is in his back, but I assume he can't reach around to let you know?
It seems like he needs the attention of an orthopaedic surgeon,a respiratory physician and possibly pain management.
During my treatment for scoliosis in the 1980's I spent over six months in hospital and met many scoliosis patients who sound similar to your son, so I can certainly appreciate how difficult it is for a parent.
have you found any support groups for parents who have children in the same situation as your son?
9th August 2005, 09:06 PM
Hi Helen and welcome to SSO. I'm sorry to hear about your son, and the pain that he is in. The others have asked important questions and I look forward to hearing more about your son. It's heartbreaking seeing them in pain, no matter what their age.
9th August 2005, 09:17 PM
Thank you Toni, Amazed and Sins,
I will answer your questions,
We are from Duluth MN and have 2 drs one in St Paul, been a year since a visit,
will see one here shortly but does not think pain is from scoliosis. Degree is about 90 and not sure 4/5 lumbar..or even more, but had it removed so did not work that well....got infection and rib for bone graf. Started at 3yrs old.
Thanks for CT scan info and info about lung condition..Matt does not have any of that, but he is in a chair with limited mobility.....
Yes I am also on another site....He can remain upright in chair...yes his curve has gotten worse...no more surgeries though three is enough....that makes sense about the inflammation in the muscles rib cage....he does get congested a lot.....
What test can be done to assess inflammation or breaks etc....his tailbone protrudes immensely!!!!!huge bone sticking out there....
Thanks and I welcome anymore questions or help!!
9th August 2005, 09:33 PM
I suspect that anyone with as 90 deg curve from infancy would have restrictive lung disease.In my own case, this would become evident through coughing, wheezing and congestion, basically asthma like symptoms.
If he gets congested a lot, there are ways of clearing his airways.There are some basic physiotherapy exercises you can do to get his lungs clear.A good pulmonologist would assess him properly and suggest some active treatment.
To determine how solid his fusion was would take a detailed scan, possibly with some radioactive tracer where weak areas of the fusion would be show up more clearly.
Don't allow physicians to dismiss his pain and your concerns because he can't actively explain what the problem is.You know what he has to endure...........so only you can fight in his corner for him.
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