Living with Scoliosis

The Best Mattress for those with Scoliosis (or back problems)

2010-10-28T19:37:00.000-07:00

Okay, First of all, I must say that I have HATED every mattress I have ever slept on. I always blamed it on my Scoliosis.

We had a nice queen pillow-top mattress that my parents bought me before I got married, and after a few years of HATING it, we threw it downstairs and dragged up my aunt's plain old mattress that was 30 years old and was down in our guest bedroom. That was better than my expensive pillow-top, but after 5 years of that, I finally convinced my hubby to get us a king! Yes, heavenly.

He wanted a Tempurpedic, and since we would not be able to afford food for our children after buying such things, we bought this mattress from Costco. I just thought, "I hate every mattress, I might as well try something new, what's the worst that can happen? I will still hate it! Ha!"

Well, folks, I'm in love. We both dream of climbing into bed at night. We think that because it's only the top 2.5 inches that is the memory foam, it's probably better than the Tempurpedic. We heard the Tempurpedic can be too soft, and that it makes a huge hole where you are sleeping, so then you have to "climb out" in order to get into a new position.

I also stole this pillow from my mom's house (sorry mom)!!!
And cannot sleep without it. We visited my parents last week, and I had horrible neck aches every morning because I had forgotten to bring my pillow (well, their pillow, actually). I did not like the pillow at first, but after about a week, I loved it. I loved the mattress imediatly, but have heard that it takes people awhile to get used to as well.

Anyways, I just have increased my quality of life, and am SOOOO happy, I just thought I'd share it all with you :)

Thanks to my Hubby! You're the best.

Is Surgery the best answer for Scoliosis???

2010-05-18T05:46:00.000-07:00

I had heard that having surgery was not always the best solution.

After I had the surgery for the first 7 years, I thought it was. I thought that everyone should have surgery, as it had helped me so much.

Now I know that having the surgery, causes other problems. Other pain, and other issues.

Basically just having scoliosis is the problem. I wish there was something they could do to stop the curve to begin with. I wish I would have gone to Physical therapy when I first found out I had it, and not Chiropractic care. I wish I would have worn the back brace. I wish I never had scoliosis.

But what can I do? Just continue to live my life the best I can. Many people have it worse than I do. I can only count my blessings. Who doesn't wish they didn't have this or that health problem, or who has a perfect life? Almost no one.

I am so thankful for the life I do have. I am thankful for my sweet and understanding husband. I am thankful I was able to have 3 beautiful children that bring me so much happiness. I wouldn't trade them for the world. All the pain they have caused me has been worth it just to see them grow and learn and love me. I love how children love you no matter what. I could have yelled at them to go to bed and been a mean mom, and then as soon as they wake up, they don't remember, they only know how much they love you.

I have a great life. I will continue to be happy and do everything I want, it may just be a little modified :)

Being a Hairstylist with Scoliosis...

2010-05-16T06:30:00.000-07:00

When my kids are all in school I wanted to work full time, or close to that. But now I think that because of my scoliosis, (and the pain I've had this last year) It would be best NOT to work full-time as a hairstylist. I don't regret it, as it is still the best job for being a mom. But, I think when my youngest goes to school, I will go back to college and get a different degree. Maybe I'll be a teacher. Or if my husband makes tons of money, maybe I'll continue to just stay home and eat Bon-Bons :)

Since we moved here to Montana 1 month ago, I have not done hair. I am taking my time to get licensed here, and then I will take my time to start back up as well. Then I plan on doing it only on Saturday mornings.

I must say, for now, it's awesome not working :) Taking care of my 3 kids and the house is plenty :) I do miss talking to friends and making money meanwhile though, so that's why I will start up again eventually :)

Scoliosis and Physical therapy

2010-05-12T07:24:00.000-07:00

After the "spinal headache" went away after I had my 3rd baby, I just got a regular headache every day. I would joke with people and say "Now I just have a headache from having 3 kids!" But really, it sucked. I now think that it was maybe from the hormones(?).

When he was about 3 months old, I think those headaches stopped. Then when he was about 5 months old, I started having chronic neck pain. By the end of the day, I would get a horrible headache that started in the base of my head and then would go to the front.

Then it got worse. I would wake up with my neck hurting SOOO bad, and then by about 9 am, I would get the headache. Ibuprofen would not even make a dent in the pain. I stopped wanting to do anything. Cleaning my house, feeding my kids, breastfeeding, changing sheets, working on the computer, doing hair, was all SOOO painful. I lost the desire to move. Driving was also painful. Checking my blindspot, turning around to hand my kids something, and basically just sitting there caused more pain.

I knew I had to do something. I quit breastfeeding. I made an appointment with my family practitioner. He didn't really know what to recommend to me except he did prescribe me Naproxin (which is a stronger anti-infamitory like IBProfren) and some muscle relaxers. Since I have chronic pain, I think I am the type that could get addicted to strong pain killers, so I wanted to try everything else first. I remember the first time I took the medicine, I was so happy that I could check my blind spot and not have pain! These meds still were not enough though. I took the max amount of both that I could- day and night- and I still had pain.

I made an appointment with a Physiatrist, (a rehabilitation physician, a medical doctor who are: Experts at diagnosing and treating pain). He thought I was a perfect canidate for Physical therapy and he reccomended someone in my area who he thought would be good for my condition. He also said that the PT may want me to go 2-3 times a week, but if I didn't think that was possible with my schedule/health insurance, that I should just tell the PT what I was able to do.

My health insurance is a $25 co-pay and then 80/20 insurance after that. So there was no way I could afford to go that often. On my first visit to the Physical therapy (I went to Seth Riley at Hand and Orthopedic Specialists in Bountiful, Utah) I told him my situation and he said that he teaches me to do the exercises at home and so he thought it would be okay if I came once every other week.

He told me that after 8 years of me being a hairstylist, and doing too much that I had gradually stopped using the little muscles that are close to my vetibraes and joints, and I was only using the big muscles on top that go from my neck to my shoulder.

I had been told not to ever jump on a trampoline, but the last two years I had jumped on one with my 2 little kids, just bouncing and small stuff like that, not thinking that it would be a problem. I also had heard some people who had this surgery were never allowed to go horse back riding... and I did that recently for 1 hour (and had the worst neck pain/headache after!)

I vowed to NEVER go horse back riding or jump on a trampoline again. He also talked to me about my migraines, me being a hairstylist, and all of my other everyday duties that affected my neck. I stopped carrying around my baby as much, started changing his diaper on the changing table instead of the floor, etc.

After doing the exercises he gave me, the next day my pain was always worse. I felt like I was never going to get better, I was only getting worse. Then after about 3 months, I noticed a difference.

3 months after that, he put me on a maintenance program. I HAVE to do the exercises at least once a week, but I should still do them every other day.

I should add in here that my husband didn't really want me to go to PT. We didn't have the money. He thought I could get on the internet and look at neck exercises to do. Boy was he wrong! The exercises the PT gave me were nothing like I would have found online. They were strengthening those little muscles deep in my neck, where the exercises online would have been working the big muscles that were already being over worked. Physical Therapists have a Doctorate degree, and are SOOO smart. He knew SOOO much. He tested my nerves, as he was worried about nerve damage when he heard about how my arm and half my face goes numb when I get a migraine. He taught me SOOO much.

So, It took 6 months of Physical Therapy, changing my lifestyle a little bit, and now, I only get the neck pain/headache after I have a long day where I do too much. Example: We recently moved to Montana. Everyday for about 2 weeks, I had to take my medicine and at about 7 pm I had to stop un-boxing the house. It just hurt too bad. The other day, I vacuumed and cleaned the whole upstairs. Then I got a neckache/headache in the afternoon.

The good news is that we bought a house that is a rambler. I only have to go up about 2 stairs to go in the house. It had a laundry room on the main floor, and in the basement, so I put my washer and dryer on the main floor. It is so nice to not have to carry loads of clothes up and down stairs all day. Also, my last house had wood floors throughout almost the whole upstairs... this house has carpet almost everywhere. I LOVE IT.

I think that with me continuing my physical therapy, and changing my lifestyle, (and as my baby grows up and can walk, and my kids can take care of themselves more) my pain will continue to go down. I probably on average only take my medicine once or twice a week.

I love Physical therapists! I think that I should have gone to one before I had surgery, right after I had surgery, and in between! It would have helped me sooo much! At least I went when I did, but I wish someone would have told me about them long ago.

Pregnancy and scoliosis...

2010-03-25T08:09:00.000-07:00

The next 5 years were pretty normal. I was a hairstylist, and was virtually pain free. I’d say after about 6 hours straight of doing hair, my back would hurt. Nothing too bad though. I was sooo happy I’d had gone through with the surgery, and was happy overall. I got married, went back to college, and was doing great. I didn’t have a migraine in four years, since before my surgery.

Then came pregnancy. I got a migraine even before I knew I was pregnant. I think I had two more shortly after that.

I’d say that 99% of women say that their back hurts when they are pregnant. But I feel like I can really say that my back hurts when I’m pregnant. I mean really. I also got a headache every day, was nauseous, and I don’t know if I mentioned this, but my back hurt.

Mainly my lower back. I never wanted to bend over, or sit. I quit a little part time job I had, because it hurt too bad to sit. I remember even driving home from work was only a 15 minute drive, but it was almost unbearable. I also went to a Christmas play went I was about 6 months along, and I couldn't finish it. I could NOT sit that long. I went into the foyer and laid down on one of their couches :). I was actually really thankful I chose to do hair as my profession, because I could at least stand and work. If I was a dental assistant, or something that required more sitting, there is NO way I could have worked while pregnant.

My OB said that I could probably get an epidural, but we’d have to see. When your back is fused, it is like one solid bone, so there is no place for the needle to go in. Thank goodness I was able to get one. The doctor warned me about all the risks, and said that because of my scoliosis, I was at a higher risk of everything… ex. Spinal headaches, it not working, etc.

At first the epidural didn’t work on my right leg. Then the anesthesiologist put in more medicine and then I was really numb. The exact same thing happened with my second baby... It not working on the right leg, but then he put in more again and I was just SOOO numb. I was just thankful to have an epidural, and didn't really care.

But then with my third baby, I was dilated to a 7 ½ and with my record fast deliveries, the anesthesiologist decided to do a spinal and an epidural. It worked great. I had no pain, I was not too numb, and had my baby about 20 minutes later.

Then it was time to go home. I got up, got dressed, went to the discharge class. I came back, and oh boy, I had the worst headache ever. I just wanted to go home. My husband took me home, and instead of getting my other kids, I just went in and went to bed. When I woke up, my headache was gone. But then I sat up to breastfeed. And BAM! It was back. Then I took another nap, and it went away. This continued for a whole day until I called my OB. He said to come in.
I went in, then he sent me straight over to the hospital.
I had a “spinal headache” from the epidural. Great. Every time I sat up or stood up, I'd get a horrible headache from my spinal fluid leaking up to my brain and putting pressure on it. I guess it was good that he did a spinal and an epidural because then he used a smaller needle.

There was an aggressive approach to fixing it, and a conservative approach. The aggressive approach was to go in right then, and basically re-do the epidural. then they put a little blood in it and it "patches" the hole.

The conservative approach was to go on bed rest for a few days, and drink tons of caffeine and take Ibuprofen 24/7. Then we could see if it was getting better on it's own, that was great, or if not, I would come back and do another epidural.

After a few days, the headache would only come if I was up for 15 minutes or more... Then after a week, I could be up for about an hour... etc. So that's what I did. I just healed on my own without having to re-do the epidural.

Although I don't believe that epidurals are bad, I actually love them and think that is the way child-birth should be :) I do think if I were to have another baby, I would just try to go with out the needle in the spine. I knew I had a higher chance of this because my spine is crooked, so I was willing to take the chance, but now that it has happened, I think I would try other pain meds in my IV, or to go all natural.

Surgery Pictures

2010-03-10T19:12:00.000-08:00

I think these are hilarious! I am asleep in some of them! The other ones that I'm not in, I took myself. These are all with a Polaroid camera that my mom got me. Are those even around anymore? Too funny.

X-rays

2010-01-26T07:39:00.000-08:00

I just thought it may be interesting for me to post my X-rays on here...

This is when my lumbar curve was 42 degrees... I had surgery when it was 46.
The neck was 19 degrees and my lower back was 25 degrees in this X-ray...

This is my back after surgery.... My worst curve is now 22 degrees...

Slight improvement, don't you think?

Home...

2009-12-01T13:43:00.000-08:00

The pain was worse when we got home. The first few days were SOO bad. I regretted coming home so fast. I did not want to eat anything. I felt nauseated. I would eat a couple of crackers with my Loritab. I started puking. Green slimy stuff. So I quit taking the Loritab, and I felt much better. I just took Tylenol during the day and Tylenol PM at night, and I was fine. Now I look back and can’t believe I was off the pain meds so fast. I think it was about two days after I came home I was off. I think I was used to having pain, so I just dealt with it. I was never comfortable while laying, sleeping, or sitting. Sitting was the worst. I couldn't get out of bed. I had to roll out of my bed onto the floor, then get on my hands and knees to then stand up. I remember my dad putting on my compression socks on my legs and then my socks and shoes on for me, because I couldn't bend over to do it myself. My parents made sure one of them was always there for me. My mom helped me with my hair. They just waited on me hand and foot.

After about a week, I think I could do one thing a day. I remember one day I went to the mall with my brother Corey. We just walked around for a few minutes, and got something to eat in the food court. I remember it feeling so unnatural to walk. I didn’t know how to swing my arms right, and I felt like a solider or something. I was SOOO tired after that and had to go home and sleep.

Gradually, more and more, I was able get back to life (a little). I had quit my job and I wasn’t going to school that semester, so I don’t know what I had to go back to. I do remember that many, many of my friends called and I always just told my mom to take a message. I didn’t want to talk or see anyone. I kind of dropped off the face of the earth at that time. Now I look back and think that was really rude of me. I don’t think I was depressed, just maybe ashamed/embarrassed/tired/and didn’t care.

My parents moved about 2 weeks after my surgery. I was so tired and honestly couldn’t help them one bit. My aunts all came and helped them unpack. I remember laying on my bed while they put all my clothes in my drawers for me and they were just teasing me the whole time about how many clothes I had. It pretty much sucked just laying around for weeks. I watched so many movies. I was so bored.

I had told my doctor that I wanted to go to Beauty School. He said I shouldn’t. That profession involves a lot of bending, and standing, and it would be bad for my back. Well, 12 weeks after my surgery, I moved about 100 miles away and started beauty school. The first 6 weeks of beauty school was all book-work, so I just continued to heal and I did fine. I think I was just a little more tired than the other girls.

My Surgery…

2009-11-30T16:59:00.000-08:00

Getting ready for surgery...

I had to give blood so they could give it back to me for a few weeks before my surgery. I was weighed, measured, had many x-rays taken while in odd positions. I had to take a pregnancy test. It all kind of seemed surreal. The night before my surgery, I was really scared.

The doctor had told me what all the risks were, that I could die, the rods wouldn’t fuse to my back, I could go paralyzed, etc. I was really nervous but knew I was doing the right thing. It was so scary. I had never really been sick in my whole life, never been to the emergency room, never been checked into the hospital. We had a family prayer the night before, and I remember sitting in the room, and feeling like a bucket of warm water had just been poured over my head. It was Heavenly Father helping me to know I was going to be okay.

The next day, really early, we went in. I don’t really remember much, but one of the last things I remember, was a doctor hooking up electronic wires to me all over my body. He said that he was going to be monitoring my nervous system while I was in surgery. My mom lost it and started bawling, so I said my good byes and she and my dad left. I felt cold and all alone. I was pushed into the hall, and all the nurses and doctors were in the operating room, laughing and talking, while getting everything ready. I remember just crying. How could they be so happy, and just laughing, when I could DIE? (yes, I’ve always been a little dramatic).

The anesthesiologist came down the hall, and put some stuff in my IV, and I went to sleep.

I don’t really remember anything about waking up except that most of my family was there around my bed. I noticed my brother Corey was the only one not there with me.
“Where’s Corey?” I said.
Over and over. I think that’s all I said for awhile.
I fell back asleep. When I woke up next, my brother Corey was there. I looked at him.

“Hi.” And I fell right back to sleep.

I don’t remember much from my hospital stay…
My surgery was a success. Best case scenario most curves only improve 50%. My worst curve went from 46 degrees to 22 degrees. Barely more than 50%. 9 vertebrae were fused, from T5 to L2. I had 9 pins and 2 rods in my back.

People came and visited me. I did not remember that so many people visited me until I saw later when my mom showed me the Polaroid pictures I had took. She had the idea to give me the camera and I could take pictures of everyone who came. Maybe it was because I looked so horrible, she knew I would hate her later if I was in all those pictures. I have some pictures of me, though, and boy, do I look horrible.

One day after my surgery, I started my period. Great. Not only was I having to have sponge baths, but now the nurses had to clean and change me down there. The CNA’s were so nice and acted like it didn’t bother them a bit.

I was pretty much in and out of sleep for two days. I don’t really remember being in a ton of pain, but I think I was always pushing the morphine button. I remember my back being so stiff, and my muscles right in the middle (where my worst curve was) felt like they had been stretched soooo tight. I was so sick of laying on my back all the time. They would put a pillow behind one side of my back so it would put the pressure on the side a little just to give me a break.

I think after about two days, a Physical Therapist came in and said he was going to teach me how to walk again. I thought, “What! I can’t even sit up yet!” But sure enough, he got me to stand up, and with a walker, he taught me how to pick up my legs with my knees and I took a few steps. Wow. I loved him. What a cool job. So then over the next few days, I walked a little more each day.

The nurses wanted me to start weaning off the morphine.

I was soooo ready to go home after 4 days. Before my surgery, the doctor said that at best, I would go home after 5 days. I HAD to go home tomorrow. I started asking every nurse I saw if I was able to go home tomorrow. They said I had to go poo so they’d know that my bowels were working.

So on the 5th day, there was no sign that I was going to go poo. I kept asking the nurses though. They asked if I wanted help… with a suppository or an enema to help make me poo. I was so desperate, I did it.
And I got my wish. I got to go home on the 5th day.

When we arrived at home, we measured my height, and I was now 5 foot 7 exactly. I had grown 2 inches.

Continuing...

2009-11-19T07:52:00.000-08:00

During this time my parents took me to have acupuncture done. Also we drove up about 60 miles away and had some other naturalist do some sort of “energy” mumbo jumbo on my back. Nothing worked, the curves just continued to get worse.

When I was nearing the end of high school, my worst curve was up to about 40 degrees. The doctors started talking about surgery. I say doctors because I kept going to different doctors trying to find one that we liked.

Finally, I found one. His name was Dr. Orme. He was older and he blinked a lot. His eyes almost rolled back into his head type-blinking. It was kinda odd that he was a surgeon. And that we liked him for that matter. He had tons of experience and he knew what he was talking about.

He said he thought I was finally done growing and once the curve exceeds about 36 degrees (which it had) it tends to continue to get worse the rest of your life. Great. Did I really want to deal with this the rest of my life? Did I want to be a newlywed and have to go in to have surgery? How about if I had small children? That sure would not be a good situation.

We started praying about it. Was surgery the right thing for me? Was this the right time to do it? Did we feel good about this doctor? Should we wait longer?

We felt good about all of it and in December of 2000, I had the surgery. My worst curve was 46 degrees.

Continuing...

2009-11-18T18:48:00.000-08:00

I remember having back pain quite often. I babysat a lot, and after holding little children I could tell it especially hurt my back. My mom said I never complained. I just think I learned to push it to the back of my mind, and what use did it do to complain? Does anyone like a complainer? No. So I just kept going.

I must add in here too, that in Junior High I had started having migraine headaches. I did not know they were migraines at the time, but about 2x a month, I would get blurry vision. Then dizzy. Then my left arm, hand and face would go numb. Yes, just my left side of my face. I would go to the office, call my mom, go outside and wait, and then throw up in the bushes. Then the most horrible headache would come. I wanted to die. After going to the chiropractor, my headaches gradually spread out and I only got one about every 6 months.

I continued to be a happy, healthy girl. I worked as an envelope stuffer when I was 15, then a handcolorist painting photographs when I was 16, and then when I was 17 and 18, I worked at a clothing store called Sportswear Design Inc.

My back pain and my Scoliosis never really affected my life. I loved to wakeboard, snow ski, and anything else adventuresome. I went bungee jumping and skydiving. I often tried to compete with my three older brothers. My mom thought I was crazy for getting up on the huge cliffs in Lake Powell right along side with them and jump off into the water. I dated some in High School, and was pretty popular. I was friends with many, many people, and had a bunch of different groups of friends I would kinda rotate hanging out with. Once I got boobs (finally) I was self conscious about them because my rib cage was twisted, so it looked like one breast was bigger than the other. It was okay though, no one noticed but me unless I pointed it out to one of my girlfriends. Every once in a while someone would notice my back if I was in a swimsuit. Other than that, I was normal looking.

The next few years...

2009-11-17T18:00:00.000-08:00

The next few years….

Soon I was in my mom’s car, and my mom consoled me. I was going to survive.

“Everything would be fine.” She said. My aunt Cindy had Scoliosis and had rods put in her back when she was younger, and look at her, she had 4 kids and was a single mother, working full-time. I would be alright. And I was alright.

My parents took me to the chiropractor. He said most of the time when he had kids come to him after these school screenings, they were usually wrong… that they really did not have scoliosis.

Not me. After he did x-rays, I think his reaction was something like “WOW! You really do have scoliosis. And geese, it is bad!”

I think at that time, my worst curve was around 22 degrees. I had a “S” curve, but I really had three curves, so it’s like an “S” with a curve at your neck too. My worst curve was in the middle at my chest. He recommended I come see him 2X a week. I did this and to make a long story short, my curves just kept progressing over the next few years.

Maybe it was because I did not have a back brace, (didn’t know that was even an option at the time) or because I didn’t tell many people, or maybe just because Bountiful, Utah is the best place to raise a family, but I do not remember anyone ever teasing me about having scoliosis. I remember being teased about my hair, or having no boobs, or that I had never kissed a boy, but never about my back. I did not worry, complain or cry about it unless I had just gone to the doctor. Going to the doctor and hearing that it was getting worse, and hearing their horrible reaction always made me feel bad. They never sugar-coated it.

Once my worst curve was around 32 degrees, we decided to go to an orthopedic surgeon to have him check me out. Now that I look back, we probably should have gone sooner. Then maybe they would have given me a brace, and could have stopped it from getting worse. My doctors just never really encouraged me to get a brace. Almost every Orthopedic Surgeon I saw said that most girls won’t wear them and that they are not proven to even help. I think at that I did not argue. I did not like the idea of wearing one.

The first day of the rest of my life...

2009-11-16T09:52:00.000-08:00

The First Day…
I was in gym class. Eighth grade was great. I had broken out of the nerdy, dorky, almost homely stigma I had in Elementary school, and I had many, many friends. I was happy and enthusiastic. I had tons of energy, and even a few boys who were friends.

Time for gym class. We were doing “Scoliosis checks.” Oh dread. What is that? We all had to stand in line, and once we were at the front of the line, we had to go up in front (of everyone, by the way) and a sweet lady ran an instrument down our back. I was towards the back of the line. After all my friends got checked, the lady would say, “go put an X by your name.” This happened over and over.

While in line, I turned to my friend Amy and I said, “What is Scoliosis?” She replied, “It’s when your spine is curved.”

Finally my turn arrived. I didn’t think much of it.

But then…

Instead of saying what she said to everyone else, the lady said, “okay, go put a .25 by your name.”

“What? What? What does that mean? Do I have scoliosis?” I was shocked.

“Yes.” She replied sadly.

I burst into tears as I put a .25 by my name. I was deformed. Retarded. Different.