I am new to this forum so this is my first posting but I have some questions about what I am facing as well as information that I think should be available to others. I had my scoliosis surgery in 1983 when I was 12 years old. I am currently 35 yrs. old. I had no complications from that surgery which fused T5 to L5 with Harrington-Luque rods and no complications with my rods/spine since. However, in my twenties I developed headaches during sleeping at night and eventually they grew so bad we were forced to determine what was happening. I also developed heart palpitations. In my late twenties, we found my red blood cells to be very high and after convincing my primary doctor to do a sleep test (this took a lot of convincing because of my thin stature, I do not fit the mold for someone with sleep problems), found my oxygen saturation to drop drastically during the night (pulse ox registered o2 at 27%). They labeled this severe obstructive sleep apnea (OSA). However, I do not necessarily believe it is OSA but instead is a sleep disordered breathing (SDB) caused by two things: 1) restrictive lung disease - I have a lung volume/capacity of about 45% (many scoliosis patients may have or develop this due to what scoliosis does to the rib cage) and 2) wearing a brace in my adolescence caused me to learn an odd breathing pattern. This odd breathing pattern seems to happen when I get into a deep sleep and basically puff out the air I am inhaling before I actually take much if any of the volume of air in.
I have been using a BIPAP (Bi-level positive air pressure) device for 7 1/2 years now and it has helped me with my heart and lungs by providing the volume I need at night to stay at 90% oxygen or above. If you have restrictive lung disease, you may need a bipap at night to help ventilate ie. provide the volume you need to keep your lungs and heart healthy. I truly believe it adds many years to your life. Without it, you may experience heart palpitations, heart / pulmonary hypertension etc. leading to early heart disease and even death. I have a very specific type of bipap called a VPAP II ST-A made by ResMed. I truly believe that a person with restrictive lung disease needs a bipap with one of the important functions that my machine has. It is called MIN IPAP time. A bipap works by providing an Inhale (IPAP) pressure and a lower exale (EPAP) pressure. It synchronizes very nice with a person's breathing patterns. What a MIN IPAP setting does is make you breathe in the higher inhale (IPAP) pressure for a set period of time (for example: 1.5 seconds). Which is what a person usually does when they take in a breath. This helps me because it counter acts that breathing pattern I was talking about above by not allowing me to puff out that air before I take in the volume of the breath. I no longer have palpitations or pulmonary hypertension by the way. I also no longer have night time headaches.
When I had my first sleep study, they said in order to properly ventilate me (ie. achieve oxygenation 90% or higher) they had to increase the inhale pressure (IPAP) to 25 and and the exhale (EPAP) pressure to 9. They didn't really need to go that high and indeed I could not tolerate that high because of my restrictive lung volume. If they had just added the MIN IPAP time on there as well as added in some additional oxygen (also called bleed in some oxygen) I could have achieved the same results with much less side effects or detriment to my life style etc. Side effects of too high pressure - air in stomach, bowels, out mouth etc. I point this out because some bipaps have this functionality and some do not and I am not sure doctors are aware of its use.
One problem is that there are few sleep medicine doctors and so you are often sent to a pulmonologist but they don't often understand the relationship between scoliosis, heart/lungs and sleep breathing problems. They say the sleep labs have the medical background/expertise to deal with sleep issues. A sleep lab treats you like a generic group of overweight men they usually treat with sleep apnea and don't seem to have expertise to understand how sleep is affected by lungs and how restrictive lung disease affects a sleep study (They refuse to step out of their mold). A scoliosis surgeon says he only specializes in spine etc., not lungs or sleep. There doesn't seem to be a doctor that understands all sides and treats for it. Does anyone know if it exists???? If not, why not, why can't we find doctors to specialize in scoliosis in general and what it does to the body and future consequences from it etc.
I am glad this forum exists because I think this knowledge needs to be spread. I don't know if there have been any studies done on wearing a brace, low lung volume and future problems such as sleep disordered breathing. Does anyone know this? I do not believe that both me and my sister can be the only ones facing this problem. She has the same issue by the way except she is on oxygen 24/7 and is 32 yrs. old. She is just about to get tested in the sleep lab and hopefully get a bipap that will help. I know our cases are specific but maybe others have similar problems.
Appreciate your comments...