Hi. Tried to figure out how to search but new to group and so decided to just post.
Our son is 17, severe cerebral palsy. I realize that complicates things because the issue isn't just scoliosis. At 12 yrs. old he went into puberty. Spine was pretty much ok before that but he also had very little trunk control. The initial curve was 47 degrees. Six months later it was 82 degrees and a few months after that they did spinal surgery. He was 13. From xrays it "appeared" that he may have pretty much stopped growing. Around 15 years old or just before he did one last growth spurt. He developed crankshaft. The vertebrae rotated with the ribcage. The curve increased. He has a stable kyphosis, stable lordosis and somewhere between 76 to 85 degree broad "C" thoracolumbar curve to the right.
The result is that the right lung is smaller than it should be and compressed between the spine and the ribcage. He has the elongated hump on the back right side. The right chest is flat and pushed back and the left lung is enlarged and ribcage very protruding. The sternum is more off to the right. He has decreased lung volumn. He has increased difficulty moving secretions. He had a 3-d CT of the ribcage and spine, which was pretty interesting because you can see the total deformity of the ribcage, and the rotation of the spine. With the rotation he ended up with the bar going between the two rods "poking" the skin from inside on one corner. That turned into infection and he had surgery to remove the bar and deal with the infection. Bacteria is on the rods but they cannot remove the rods safely, cannot do surgery without the high risk of total pulmonary collapse, plus the one rod is almost more to the side where the rotation occured. He is on lifetime antibiotics to confine the bacteria to the rods.
The diagnosis is severe restrictive lung disease. He is on daily breathing treatments. We've noticed more issues during seasonal allergies. So far no pneumonia. Big thing is the secretions and all. We do suction for that. We now have an oxygen concentrator machine in the house...haven't had to use it to much so far. The big things we have been told is flu or any respiratory infection would be a major issue and that even with antibiotics he may not be able to fight it.
I realize the odds of anyone here dealing with a similar situation is probably pretty slim. I have joined numerous groups related to CP/scoliosis and seems like the combo of both and restrictive lung disease is not that common? I don't know. My main question is this. We understand the whole aspect of respiratory infection/pneumonia being an issue. What I'm wondering is everything I have read on line says that when a lung is restricted then the volumn is decreased, the air flow is affected. When I listen to the right lung from the side I can hear just a short intake and out take. My understanding is that if there is not adequate air intake then that affects the oxygen/carbon dioxide exchange, shallow breathing becomes the norm and the air sacs can begin to close down (Atelectasis) causing the lung to become stiff. If the condition persists then the lung may not be able to re-expand.
This sounds to me like even if our son avoids say pneumonia, the flu, bronchitis, etc. that the mere aspect of the situation can be progressive. That the lung can suffer long term damage to to the poor exchange. We were told that the breathing treatments were primarily to assist the left lung is being at it's optimum...keep the airway/bronchi clear of mucous/secretions and open but that it would not help the right lung.
The thing is that for the past year we thought "ok..just watch out for him getting the flu this winter etc." Then we saw was allergies did when we went through a two week period of his heart rate high, sats in low 90's and watching him struggle to breathe...resulting in the oxygen in the house and having to use that. Now I'm thinking that yeah, those things are a concern but long term wise my gutt says this is progressive no matter what and that at some point we will start seeing more and more issues and possibly pneumonias.
Sorry this is so long. I'm not even sure what I hope to get from this group. I think it's just a bit frustrating. There is so much out there for obstructive lung disease. Information and support groups etc. Restrictive lung disease is like "oh yeah...and there is that one". Add cerebral palsy and it's almost like "forget it". I guess I just want to know if anyone is dealing with restrictive lung disease and it can't be corrected by surgery and what impact it's having on them.
Thank you for taking the time to read this.