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Delta107
06-02-2014, 01:41 PM
So I've done today a spirometry test that checks the lung capacity. FVC is 2.57(norm foe my weight and height is 4.80) FEV1 is 2.40(norm is 4.10 for my weight). Anyway the point is that I've got quite serious lung capacity restrictions.

What I am concerned about is my exercising issues. When biking I can get dizzy, after some effort, like I am flying. So I am at risk on turning my bike upside down.

I haven't swam for quite some time but I remember that at times I could get dizzy, feeling weird.

EDIT:
I read on the net that breathing through purse lips can help. When doing this exercise I can feel my chest expanding more. But I read that supposedly this helps because the lungs have more time to extract oxygen from the air.(normally only a few percent of oxygen gets absorbed before needing to let out the breath) But I get dizzy(like drunk) after a few breaths. Am I breathing too fast through the pursed lips?

edit>I guess I was breathing too fast... Today when walking I did some breathing exercises slower and I wasn't dizzy.

rohrer01
06-02-2014, 08:52 PM
Delta,

It sounds like you're at between 50-60% lung capacity.
This is nothing to take lightly, especially if you experience these symptoms upon exercise.
I would suggest going back to the doctor and having your Oxygen saturation levels checked.
They can check them at rest and during exercise.
They don't normally like your Oxygen saturation to be less than 95% at rest.
It shouldn't fall below 90%. If it does, Oxygen is often prescribed, although I'm not an expert on this.
It's a simple test. They just clip a little sensor on your finger to measure O2 saturation.
They do it all the time when I go to the Cardiac Rehab Center for my exercise.
They check it before, during, and after exercise.

Please have this done. It could be an indication for surgery so that you don't lose any more lung capacity.
It's my understanding that scoliosis surgery does not improve lung capacity (my surgeon said that it can sometimes reduce it), BUT it can halt the loss of it.
But, like I said, I'm not an authority on this matter. I'm just very concerned. I don't want to see you lose what you have.

Best wishes!

Delta107
06-03-2014, 08:27 AM
I hope that I'm not annoying about writing on this forums about my issues. But I can't talk about this somewhere else. So feel free to ignore. But I must post this. The orthopedist doesn't want to hear about the details, I don't want to talk to the psychologist about this stuff because I don't want to make her feel sorry for me. I can't talk to my parents about this because... well they are a weird bunch of people. Take the following example: when I was a small kid my mother was scaring me that if I will not do the PT exercises they'll do me surgery. Then she'll start to scare me about how at the hospital where she was operated on(she's got scoliosis) were some paralyzed women following failed surgery. Or about the infection she got back then and the need for revision. Or the pain or whatever.

I know that my self-perception is affected by my upbringing(failed). And I am sure that pain get exacerbated when I am being anxious. There are times when I'm unconcerned and don't think about my deformed spine or the future. I still get pain, but it doesn't get me. I'm aware of back pain, but I can ignore it. But other times if feels like hell. Probably at that point it intensifies, but strangely this coincides with my occasional bad moods...

I have been doing a bit of breathing these past two days. I haven't really consulted a PT because the appointment is within two weeks. But after a couple of deep breaths with long exhalation I feel localized sharp pain in my chest. More specifically I get pain in the lower left chest part where the chest "flattens" and gets "thin" and in the upper thoracic region just above the main curve. Its like someone sticks a knife there. At that point its painful to take deep breaths. Also I get something similar when rotating my torso to the right. So at this moment I feel...guilty. Look, its my anxiety talking. But I feel guilty because I wonder if I could prevent this. Could I prevent this by doing breathing exercises earlier? Probably not. But what if I could??? I guess you understand the line of thought I'm talking about. Last time I went to the swimming pool I had a bad episode of this sharp pain above the curve when I could do very shallow breaths.

I told my granny(she's a retired doctor) about the fact that I can't breath well enough and she started to explain me the benefits of doing sport activity. I am aware that I am not a very active person. And I feel guilty about this. During the adolescence I could literally feel that stuff wasn't good. But I used to tell my parents that I went to the swimming pool when in fact I didn't and instead was playing at the computer. So in some people's mind its my fault that scoliosis got so bad. In fact deep in my mind I have these same thoughts. That I could have done something and I didn't. And here I am.

I can't carry anything more than 1-1.5 kilos because that makes me feel that stabbing pain I described above. I mean I can, but it hurts. I can actually manipulate more heavy weights(albeit I could feel pain sometimes) if I just bend my torso so that there is less pressure on my thoracic region. I can actually do some stuff like pushing some smaller furniture or lifting briefly my bike to check the chain. So my mother thinks that I am lying...

I think that people on the street can't know that I have scoliosis. Surely they see my neck is positioned weirdly but otherwise unless they have actual detailed knowledge about anatomy it would be difficult to say. I used to have drawing lessons at the university when we were drawing the human figure. So once I have posed. Basically my group-mates were schematically drawing an usual spinal column. Whereas in fact it wasn't straight but bended at 70 degrees... In fact I look just like about any other person except the slightly kyphotic neck and the prominent scapula and a bit of hump. I just get this feeling that people expect me to me more muscled or I don't know...

Anyway they've detected on my x-rays some kind of stuff called Kimmerlee's anomaly. The doctor says that this+muscles issues following scoliosis can account for the dizziness. And add to that the lung 60% capacity... I know now why I couldn't tolerate the gym even before becoming adult, I was getting headaches. Its probably these vertebral arteries that were/are somehow affected during exercise. But I still think inertial that this whole story is my doing. Didn't do exercises well enough during childhood... Rationally thinking I think those PT didn't know what they were doing. They were telling a six/seven year boy to stay straight all the time. No sitting, sleeping on a board, and all this strange stuff that smells of anecdotal evidence. And the PT exercises weren't particularly easy. Isometric exercises aren't simple like running or else. Particularly when I was getting headaches when lifting my legs while on my back and everyone ignored that. This is weird.

springchicken
06-03-2014, 12:38 PM
Hi Delta107,

Just wanted to send you a quick response because I felt so bad after reading your post. You mustn't blame your scoliosis on yourself. Many curves increase despite someone being very physically active. And you're right--scoliosis is an invisible disability sometimes. Can't always spot it in a person walking down the street. That can make it even harder for people to understand the pain and discomfort you have to go through.

Please consider talking to your psychologist. That's what they're there for. You need to work out feelings of guilt so you can move forward and decide if your situation might call for surgery or some other solution.

Best of luck to you! And don't ever feel bad about posting on the forum, either. THat's what it's here for.

-Spring

rohrer01
06-03-2014, 09:20 PM
Delta,
You are NOT annoying. This is why this forum is here. People like us need others to talk to that understand how we are feeling.
Your progressive scoliosis is NOT your fault, either. Your pain was restricting you from doing things that everyone wanted you to do. That's too much to ask of a little boy. You're not a little boy anymore, but you are feeling and hearing in your head all of the negativity that you heard when you were a little boy.

I had pain when I was young, too. My pain started getting really bad by the time I was about 12, although I had backaches from the time I was about 8 or so. By the time it got really bad I would tell my mom. I would tell her that my spine wasn't in the middle just below my neck. I was called a hypochondriac or pumped so full of aspirin that my ears rang. My mom would tell me that my spine was in the middle because, "Where else could it be?" I was not believed and I was in pain. When I was 16 I had an episode that was so severe that I could barely walk. In fact, a co-worker practically carried me to her car and put me in her back seat to drive me home. I got no compassion at home. I was a hypochondriac and didn't hurt as bad as I was acting like. It took me 45 minutes, tears streaming down my face, to get the courage to fling myself backwards onto my bed after being chastised for crying and keeping my parents (step-dad) awake. Finally, after a whole weekend, my mom took me to a chiropractor to took an x-ray. He pointed the problem out to my mom and said that I had scoliosis and that was why I was in so much pain. My mom's face turned red and she broke down crying. She knew she had chastised me all those years and there really WAS a problem.

She took me to a scoliosis clinic at a children's hospital in the city about a 4 hour drive away. We made regular visits. They gave me exercises that were actually detrimental for MY curve type, which no one had ever seen before. I did those exercises faithfully, despite pain. They had me in cervical traction with a home device. My mom told them I wasn't cooperating because she didn't see me doing the exercises. They were going to do surgery and I don't know what happened there. My mom said I didn't want it. I don't remember saying that. But I was labelled uncooperative, which wasn't true. They said that my curve would reach over 40o and I should have surgery when it got that big. When it did get that big, no one would touch it because the new criteria was 50o. I'm not quite there, yet.

But, the trauma in childhood CAN affect how you feel about it now. I still can't talk to my mom about it. They used to send letters home every year when I failed my screening at school. She claims to never have gotten those letters from the school. I knew she did because I handed them to her myself. We didn't have insurance. I think that was the real reason. But, because of not being seen younger, I lost the opportunity to try alternative treatments. I would have worn a brace, although the doctor's said that they couldn't think of a way to brace my particular curve later on. But by the time it was found I was already skeletally mature so they opted not to even try bracing.

I don't feel like I somehow caused my scoliosis to be worse. But I have some trauma associated with being called a hypochondriac my whole life, never being believed. Like you, my scoliosis isn't visible to outsiders who don't know what to look for. My neck comes out of my shoulder girdle at a pretty large angle. But it straightens up so isn't noticeable.

I also have pain with deep breaths. It hurts in my upper back and on the sides of my ribs. This is newer to me, as it didn't hurt to breathe when I was younger. I haven't had my lung capacity tested. But, my O2 saturation taken at the heart center generally runs about 94 - 95%, whereas just a couple of years ago it was always at 100%. I don't know why there's a difference.

Why doesn't your surgeon want to hear about your symptoms? You NEED to tell him your symptoms. It would also be a good idea to take Spring's advice and talk to your psychologist. Don't be afraid to make her sad. It's her JOB to hear how you really feel. She can't help you if you're not honest with her.

So there's my annoying story. Just so you know you're not alone AND you aren't annoying.

Take Care

Delta107
06-04-2014, 02:08 AM
Thank you for the answers!!

rohrer01
06-04-2014, 01:45 PM
You are welcome. You will find that most people on here are very open and candid about their situations. We help each other cope with the trials that come with having this deformity or having a loved one/s with it. We actually get quite personal at times, maybe TOO personal. LOL

:-)

susancook
06-08-2014, 04:40 AM
Hi Delta : if talking to a psychologist gives you the feeling that he/she is "feeling sorry for you", tell the psychologist that the comments are interpreted by you that he/she is feeling sorry for you. I have never had a psychologist that felt sorry for me. Try another psychologist if necessary. You are worth it!

You can say just about anything here feelings wise, and someone else has had that same experience and will be supportive.

Welcome! Susan