Scoliosis

MORE INFORMATION COMING SOON!

This section of my Living On O2 for Life blog is dedicated to Scoliosis. I was born with scoliosis. Even now after the corrective surgeries, multiple types of back braces, and the halo traction, I still can’t tell if I’m standing straight or holding my head up straight. I’ve been about 29 years out of wearing a Milwaukee back brace. I have only one Harrington Rod along my Thoracic vertebras. You can see the rod in the x-ray shown. Be sure to sign up to follow my blog by entering your email address in the box provided on the right. You will receive an email when there is a new post from me.

Christine's Scoliosis X-ray

14 thoughts on “Scoliosis

  1. Hi I’m Kayla and almost 21. I just found your blog! And I was recently diagnosised with PH a couple of months ago. I also have scoloisis and have titanium rods in my back. I am also on oxygen all the time! I use a portable concentrator and finally getting use to it as much as you can you know. But i was wondering what kind of careers can you get if I will have to be on oxygen for life? Also how you handled the news of having to be on oxygen for life? Im glad you are staying positive and I am too! :)) Thanks!
    -Kayla

    • Hi Kayla, it’s really nice to meet you here on my blog. How long have you been using oxygen 24/7? It’s really hard for me to answer your question about what kind of careers are possible for those of us on oxygen 24/7. Once I started using oxygen all the time, my health had declined to the point that working would be too much for my body to handle. Staying active is very important though. So if you can work and a doctor okays it, then go for it!

      Perhaps asking friends, relatives or a church for possible leads to a job that can accommodate a person’s oxygen needs. Something like office work maybe?

      As for how well I took the news of having to use oxygen 24/7… Well… I wasn’t real happy about it. Mostly because it was another sign of my health getting worse. It was hard at first. I think back when I was 17 years old, being told I had to start using oxygen to sleep with was harder than the news later in life at 24, to use oxygen 24/7. I was already accustomed to the fact of needing supplement oxygen. Before only my close friend and family knew of my need for oxygen but now the world knows. It takes courage to step out into the world with oxygen on for the first time because you worry what others think and see. I’ve learned a lot over the years. I can be who I am and not just a person who uses oxygen.

      Kayla I’m so glad that you are staying positive. Did you have a job before you started using oxygen 24/7? I only have one Harrington rod along my spine (upper thoracic vertebrae area). I wish you well! I hope you in enjoyed my blog!

      Christine

  2. Hi Christine thank you so much for replying to my comment! And i actually found out about your blog through Haley Lynn’s blog on her question video recently! Yah I’m new with using oxygen 24/7 luckly i can take it off sometimes if i’m resting ir walking around the house. And it was hard for the first couple of times going out in public with it but the more i did the more i adapted to it. I have had oxygen for a couples months now and not sure how long i will be on it. Im on. 1 liter i dont know how you do 5! I admire you for that! It is so nice to talk to you about living with oxygen because i dont know anyone really who wears all the time. For me its werid to think of my furture with it and getting a career because im going to college and i want to do child devolopment or fashion or business major. So yah its alot to think about but for now just taking it a day by day. And i didnt have a job before but was looking for a part time job. Now just focusing on college and my health. Im glad you are doing good! 🙂

    • Kayla it sounds like you are doing everything right by staying positive and taking care of your heart by using your oxygen. Haley Lynn is a sweetheart. When I started using oxygen 24/7, I didn’t know anyone my age who had to wear oxygen. It was so strange because those who did use oxygen were older people. So, people would stop me to say that I was so young to be using oxygen. They would always ask me if I had asthma. Haha! I always answered them by giving them a very condensed version of why I was wearing oxygen. People who stared at me got smiles. Not just the simple show no teeth kind but a big toothy grin. It makes me laugh seeing their reaction. I’m a very social person which has really helped me over the years with coping with using oxygen. I’ve even gone dancing with my husband. 🙂

      Do you take medicine for your PH?
      Christine

  3. Yah Christine haha yah people do stare and i got people who gone by in the store towards me look than glance back again lol. Yah i was never the type where i was self counisous so that helps a lot. But it was deff a first for me because you can cover up an oxygen tube right ob your face but my back i can. Im just trying to make the best out of it and laugh along the way! And yes im taking medicine for ph viagera and its working great and now letris in about a week just a little worried about starting a new medicine and about the side effects. But i need to do it to lower pressures so hopefully dont need oxygen a lot!

    • Kayla, I think I was much more self-conscience about my scoliosis than I ever was about using oxygen. My scoliosis is obvious and it has always been a challenge for me to find clothes that fit right… if you know what I mean… As a kid, I really struggled with that. Looking at my back, the right side is more protruded than my left side because of location of the curve in my spine. Even with the rod in my back, it still didn’t help diminish slight hump on the right side. Oh well. Not much I can do about it now, right? 🙂 I tried both medication that you mentioned. Both of them I couldn’t tollerate. Letairis caused swelling to the point I couldn’t breathe very well. And Viagra (Revatio) as well as Adcirca (Cialis) gave me all over body pain. Everyone tolerates medicine differently and I hope the new medicine will help you lower your pressures. Have you already tried Tracleer? That’s what I’m on now and tolerate it really well!

  4. Thats so cool you went dancing with it!! Yah at first i felt uncomfortable wearing out in public and especially college with my peers but after a week i adjusted to it. My family helped me alot get through all the new changes and im getting better in a somewhat normal routine. Just i hate where its a trial and error kinda of thing. Im a person who likes a plan but i just will have to enjoy day by day and i am. Also laugh a lot omg it helps alot! And thats so cool you went dancing with o2!! Do you have a portable concentrator? And or ph im taking viagera working great! And new one ill be taking in a week is leteris to lower my pressures. Hopefully that will help me not have o2 all the time! Im soglad i can talk to you who is another person who is on o2 and same conditon! Not alot people out there!

    • Oh Yes! K and I went dancing a lot and I loved it. That was about 3 or 4 years ago. We would go to a club and find a place off to the side where I could put my portable liquid oxygen tank down on the floor so I could get down and boogie! K’s not much of a dancer but that’s ok. I’d dance enough for us both. I did have to be careful of the smokers because they didn’t watch where they were putting their lit cigarettes. I was worried that they would get too close to the oxygen.

  5. I too have Scoliosis and syringliomylia,I have a Harrington rod in my spine also,I’m on oxygen because the medicine I was taking for pain depressed my breathing and it seems to go down to 80 then if I am conscious of my breathing it can go up to 98 or 99 when I take off my oxygen??????what, Im ready for my diagnosis , feeling a little scared, your blog brings me hope. Of having a life on oxygen, hate the stares too. I hope I get used too it some day!!!!!!!oh, by the way, I’m going to be 45 in jan 2004. Yours is September, we’re not old, just a lot wiser. Hehe

    • Hi Debbie,
      I have to be very careful of which pain medicines & how much of it I can take because it slows respiration down a lot for me. If I take one whole Tylenol 3 (Tylenol with codeine), I will have serious problems breathing and start having a bad headache. So, I have to break it in half and even then, it still gives me problems. I usually, take pain meds and then lie down with my Bipap on to rest. I’ll have too look up syringliomylia. I’ve never heard of it. This will give me a chance to learn something new! So, thanks!! Haha! Ah…. 45 years old. I have a feeling it will be a good year!!! 🙂 With your scoliosis did you have your neck fused in any place?

      Christine

  6. Stumbled upon your blog & am fascinated. I am a 75 year female with scoliosis & PH. I had a spinal fusion at 14 in 1953. Harrington rods weren’t invented yet. I had a bone graft from cadaver bone. My PH didn’t develop until 6 years ago. Losing height from osteoporosis tipped the scale enough to limit my lung expansion even more. But I get out & shop, go to shows & dinner & take short trips for the holidays with my portable tanks.( Have not taken a plane yet. When I’m walking I use 4L. I I drag my in house concentrator & plug it into an outlet on the deck & garden tethered to my 50 foot canula. The young lady who wonders what she’s going to do with her life needs to investigate jobs you can work from home with this computer society. They are increasing every day.

    • Wow! It sounds like you’re doing really well considering the PH with scoliosis. I have to ask you this… Do you ever have pain or discomfort at the site(s) of your bone graphs? My bone graph material came from my pelvic area. I get terrible neck pain now. I had parts of my neck vertebrates fuse with bone graphs about 42 years ago. All the bones are intact but I get a lot of crunching sounds in my neck often. Doesn’t sound appealing, does it?

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