Scoliosis, restrictive lung disease and sleep disordered breathing with headaches

[jam]

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...

[Wishing]

Restrictive Lung Disease,Sleep Apnea, Hypertension,Headaches,Bi-Pap

Dear Jam,

It has been awhile since you posted your questions, and I am a relatively new member. While I never experienced a brace, I have similar issues. I will share these in case it may help someone get help sooner and avoid exacerbation of problems. I am 63 y.o with a 91 degree thoracic curve and 68 degree lumbar curve. At age 16 I had my thoracic spine fused, no instrumentation, and spent one year in a cast. In 1983 had a 7 rib thoracoplasty and in 1987 a 3 rib thoracoplasty to remove a large thoracic hump. About 8 years ago at age 55, I developed hypertension. Also, at night I began to awaken with severe headaches which resolved fairly quickly upon awakening until I went back to sleep and the process repeated itself. I got curious about my blood pressure during these episodes and with a wrist blood pressure cuff began to take my blood pressure with each waking episode and logged them. I found out that at times my blood pressure went up to almost 200/120 and quickly came down when I awakened and started breathing properly.I started sleeping in a recliner as I was fearful of having a stroke at night. My internist and three different neurologists were stumped. They did not know what was happening. I had brain MRI's, was told it was benign hypnic headaches and not to worry about them; another Dr. said it was vascular headaches; another cluster headaches. I was placed on 3 different blood pressure medications. At age 61, while visiting N.Y., I had an episode
of difficulty breathing and walking. It was like trying to drive a car with the brakes on and going nowhere. I had trouble walking around the hotel and had to get a wheel chair. I was hospitalized and had pulmonary function tests and found to have severe restrictive lung disease with lung volume of 39%. I asked my Dr. for a sleep study and yes, I was diagnosed with severe sleep apnea. My O2 also went very low with high CO2 while sleeping.
I now use a Bi-Pap also which stopped the headaches and significantly improved my blood pressure. I am now off most of my blood pressure medications. My daytime blood gases have improved significantly. I feel the Bi-Pap is a lifesaver. I had difficulty tolerating the C-Pap which I tried as I could not cope with the continuous air and I found myself panicking. The Bi-Pap cycles with my breathing. It took a few weeks to get completely adjusted to it, but now it is my best friend. Please see my post under Dr. Lenke for the resst of my story. At this late age, I am very grateful to be having surgery in June.
Sorry, for the long post, but I hope it may be informative to someone.
I now understand that the above symptoms are early signs of pulmonary insufficiency and often first manifest themselves during sleep.

[The Slice]

To both of you, and anyone else interested. I am a former RRT (registered respiratory therapist) and a person with OSA. Jam, there's more to this than the headaches and low oxygen levels. The monitoring they do in the sleep lab is monitoring many things, among them is actually monitoring your sleep patterns, and your breathing. It's a myth that all people who have OSA are overweight. The apnea is NOT from the restrictive problem, but it IS exacerbating the problem and is probably part of what is making your oxygen saturation go so low. I wouldn't be surprised if your saturation went low during sleep even if you didn't have OSA. What you may want to try is working with a doctor who specializes in sleep disorders. Try seeing if you can go for a lower pressure, and supplemental oxygen with the xPAP. BTW, there's another kind of sleep apnea called central sleep apnea. For both of you, check out www.talkaboutsleep.com. There are alot of resources there for a number of sleep disorders, and lots of help from others who are going through similar problems. On another note, you might want to check this out, this is someone I call a real trooper. www.youtube.com/watch?v=DJE-CSHUMPk. I'm wondering from your post, whether you have both central and obstructive sleep apnea.

[benezans]

Restrictive lung disease

My name is Sonja and I live in Serbia in Europe.
I have toracal scoliosis from my childhood. I had two sergures when I was five. I never had problem with pain in my back or lungs before. For me scoliosis was only estetic problem.
Last year in August I was in France on my vocation. Few days I had problem with deep breath and my legs become ful of water. I went to hospital and thay did not know what is wrong with me. My CO2 was really high. They put me on wentilation.
It was really bad expereance.Doctor told me that I could die. I had pneumonia without simptoms like couch or high temperature. I was 3 month in hospital. I have demaged lung funkcion. Right now I have bipap mashine for night. I feel much better but really afraid of future. I don't know wat to expect. Doctors are not well informed about patients like us. Sorry about my english. I just want you to know that you are not alone.

[TerryB]

I posted a question about sleep apnea a little while back. I have a CPAP machine and it seems to help me. My first surgery was in 1981 the day before my 16th birthday and I will soon be 44. I have flatback and am having revison surgery April 6th. I wonder if my breathing will improve with a straighter gait.

TerryB

[Karen Ocker]

It helped mine because my ribs were no longer resting on my right hip and there was more room in my abdomen.

[oconnelg]

kypho scloliosis and bipap

I am age 58 and use bipap after respiratory failure
On bipap at night now 4 years
It is a life saver
Still get puffed due to weight on abdomen
I am 13 stone but under tall
Any ideas on losing weight helping breathing

Gerry

[kemery1]

restrictive lung disease/using bipap s/t

thanks... what great information... I too went thru the same thing and am going thru the same problems...
I am 55 with restrictive lung disease, pulm hypertension, on 13 meds... I agree with you completely about scoli drs not knowing/doing enough for the respiratory piece of this disease... I had my first surgery at 11 in 1967. was under a drs care for scoliosis until 1980s. Never did they mention the respiratory piece until early 90s when I was blacking out at work, heart palps, etc. went on a bipap s/t and things got better... but I think that stop breathing all those years did a number on my heart, and since my curve is still 96 from 156 at age 11, the surgeries didn't help the lung issue. I'm definitely checking into the Min ipap timing thing because that is still an issue... thank you sooo much for your help. if you ever want to email and talk, my email is kemery1@frontiernet.net. put scoliosis in the subject... hope things are going well with you...



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...[/QUOTE]

[Karen Ocker]

Breathing exercises- Buteyko?

Even though I have moderate restrictive lung disease my O2 sat is 97-98. My scoliosis is 50% corrected and future progression is arrested. My pulmonologist gave her blessing to trying the Buteyko breathing exercises which have begun to help. I also have reactive airway disease and need inhalers. Dust, pollen and smoke really cause me trouble. She felt I could benefit from this and reduce my airway reactivity that way.

Anybody try this?
The physiological basis makes sense to me.

[scooter950]

Cpap

Just wanted to say thanks, Jam- this is a great topic. I have a CPAP which I haven't used in years, but now they want me to use it during my hospitalization ( Cspine fusion). But it is uncomfortable, it gives me dry mouth and abdominal pain from the gas - the forced air blowing into my belly!

And yes, I still wake up with headaches too! coincidence? hmmm...
After the surgery I will ask for another sleep study and specifically ask about a BIPAP device instead- thx for sharing your experience. God bless- Jamie in Texas

[tesh]

Jam,

I'm curious how you have faired over the last 17 years since you posted this.

I'm 64 and have started having breathing issues with exertion for the last several years. My full spinal fusion was done 59 years ago when I was five. My problem is fatigue & low oxygen when I'm out & about. First pulmonologist said it was sleep apnea. put me on a portable oxygen concentrator (POC) when out & a POC for bedtime. Second pulmonologist has done two sleep studies & the diagnosis Obstructive Sleep Apnea & Restrictive Pulmonary Lung Disease