Scoliosis and insurance

So annoyed!  

I have been going to a schroth method trained physical therapist.  I was starting to feel improvements in my pain and the insurance company sent a letter saying they will no longer approve any more visits. They said one area I showed improvement in pain level so I know longer needed it and the other area showed no pain improvement, so the therapy wasn't working!!!

Then to top it off I am one of the unlucky people that got the cancellation notice from my insurance company because of obamacare

I tried to renew a new policy exactly like the one I have had for years and now because I have been getting treatment for the scoliosis I have preexisting condition and can't get insurance

My only option is to sign up under obamacare and no clue what doctors will be enrolled in network

Help!!!

Scoliosis and my Mattress War

About 6 years ago I did what most adults do at one point - I decided that our 20 year old mattress needed to be replaced

As the owner of and eco-friendly store I had already decided that I needed an expensive non-toxic organic mattress. I couldn't wait until it arrived!

As I slipped into the beautiful bed sheets anticipating my perfect nights sleep disaster struck.

I woke up unable to move

I swear it was that very day that my back took a turn for a worse (I have been told that it was coincidental relating to perimenopause)

Okay that lead to a very expensive quest to find a good mattress

1.  Organic rubber mattress - too hard

2.  Organic rubber mattress medium rubber topper - not right

3.  Organic rubber mattress with wool topper

4.  Organic innerspring mattress

5. Organic innerspring mattress with rubber topper

6.  Organic innerspring mattress with wool topper

7.  Regular firm innerspring mattress

Etc. ect. Etc

It was a goldilocks moment. Nothing worked. I crawled out of bed worse and worse, resigned to the fact I would never be comfortable again

With suggestion from Gail (my Schroth therapist) we put a regular blow up air matress on the bed. That seemed to give me some relief

But after weeks of leaking, inflating with a hairdryer every night,  feeling like I was going to be airborne when my husband got into bed,

We discovered a solution!

$105.00 air mattress bed that self regulates (not the $4500 sleep number bed I was tempted to buy) 

Slept on it last night and it may work!  It may be toxic but I don't care

* used plush setting and released air for 5-10 sec. Put on my box spring 

Didn't get it - schroth method

Turns out didn't quite get it.   

At my appointment yesterday, I whipped off my shirt in excitement to show Gail my breakthrough. 

But, it wasn't correct :(:(:(.  

Back to the drawing board. (Although she said it was closer)

She pulled out a breathing belt or help me figure out which areas to breath into

This seemed to help a lot.  We made a video of the breathing with my iphone. I am determined t figure this out.   (Oh... And by the way .... Insurance refuses to cover more visits.....we are appealing)

Schroth method breakthrough

I think I get it!!!!!

After a few months of doing excercises and not fully understanding, I think I may get it.

I must say it is very confusing. The combination of breath, and twisting, and realignment of both curves is nearly impossible to do.

Gail videotaped the chair excercises on my iphone and finally it clicked!  

She said at one point I would understand 

I have replicated it at home in front of a mirror and can't wait to show her Tuesday to make sure I am actually doing it!

Mental health appointment

My next appointment with Gail (after meeting with surgeon)

I told her that the whole appointment should just be a mental health visit.  She was great.  She said she works with people with 90 degree curves that have never had surgery

She reminded me of why I chose to go with schroth.  Reduce pain and HOLD curve

We talked about the lack of studies, the lack of treatments, and the lack of knowledge in USA in regard to scoliosis

I am still in shock that not much has changed since the seventies treatments. In fact I feel that it has gone slightly backwards. Back in the seventies I was given excercises to do when I was out of the brace. I remember hanging from a bar in my bedroom, and doing assymetrical excercises with cans of food.   With my daughter no excercises were give.   They were done away with (wrongfully so in my opinion)

Gail had just returned from a schroth training over the weekend. There were patients in all age brackets 20's, 30's, 40's and up

One girl in her 30's with a 47 & 47 degree curve was told by her doctor that she may not be able to have kids!!!  Everyone in the room assured her that wasn't true and it brought tears to her eyes!

I left with new hope and resolve

The set back

Had to do the inevitable. Met with the spine doctor aka spine surgeon

Not good. My curves are 57 & 47

His recommendation is surgery. Said should do now while young

I just kept saying there has to be another way.  He said there really isn't

I left with the agreement that we would re-X-ray in a year and if held we would do in another year.  He did say I had time because it wouldn't get worse overnight but it would get worse

:(:(:(:(:(

Energy healing and scoliosis

I went to an energy healer!! - Joanne

She was amazing. 

Although I can't explain it, and definitely can't explain to my husband, it felt great.

She focused on my back and moved a lot of stuck energy around it.

Joanne is tall like me and she told me the most amazing thing. She had minor scoliosis and 

was actually able to correct her curve.  Her chiropractor was amazed by the X-ray

She gave me a great visualization that I would like share.

She told me to picture a skeleton (like you would see in a medical school) hanging there with the straight spine. Then visualize myself walking through the skeleton and takin on that straight spine.

She said you can move bones. Just believe!

The new x-ray

Gail (my schroth teacher) recommended that I be followed by a spine doctor

It was the last thing that I wanted to do !  I bit the bullet and made the appointment (after 2 gentle reminders from Gail)

They gave me a slip for an X-ray

The day I went for the X-ray was horrible.  I had flashbacks to being a kid in those X-ray rooms, knowing the outcome would determine whether I would remain in a brace or be allowed out

I sucked it up and went in.  I made one critical mistake....I happened to walk by the room where my X-ray was on a screen.  OMG. Not good.

As the technician handed me my X-ray. He said "good luck" in a somber voice

Well, I was in a panic.  I grabbed my X-ray and ran back to my physical therapist. I may have been a little over reactive!  I sat in the waiting room and asked to speak to Gail for a few minutes .

She finally came out and took a look at the X-ray with me

She was so calm and said "we knew it was like this" "you are actually more stacked/balanced than we thought" I left with an assurance that the black shadow was just bowels!  

I dropped the X-ray off with the spine doctor.  The receptionist told me could just bring it with me on my appointment., but I insisted she take it so that I wouldn't have to look at it!

1st visit - hope

I'll admit, I was scared!  I had successfully avoided doctors, X-rays, measurements since I was a teenager.

I met Gail!  She began right away....correcting the way I sat in the chair, the way I stood, the way I laid down.  Finally someone could show me how to hold my body.  I had given up on ever knowing which way was helpful or harmful (with an s curve it is nearly impossible to visualize)

She performed a series of measurements, and we began

Because I am 49 - she said we would take it slow.  We started with some simple excercises that I would do at home

She told me that although it would be unlikely that we could correct my spine, our goals would be to relieve the pain and halt the curve from getting worse

I left with hope!

Why I chose schroth

As I searched the internet looking for alternative treatments, I became more and more discouraged.

There is not a lot of promising success stories for adult scoliosis

I stumbled on the schroth method - started in Germany in the 20's.  " The Schroth Method is a physiotherapeutic treatment system which uses isometric and other exercises to strengthen or lengthen asymmetrical muscles in a scoliotic body. Its goals are to halt progression of abnormal spinal curvature, and in the best case to reverse the curves."

Something about this made sense to me.  The idea of lengthening and stretching your spine sounded like it would help (at least alleviate the pain)

The amazing thing was that here was a certified physical therapist 15 minutes away from me.  I took this as a sign

Family history

You would be surprised to know that my family is in fact very "healthy" and active. We have had family members live well into their 90's
That being said, we can't seem to grow our spines straight!

Here is a list of my family members that have worn back braces


Me
My sister
My first cousin
My daughter
My niece


I would draw the unscientific  conclusion that it is hereditary

2nd visit

Why was I ever fighting this?  Today I layed on a massage table with a heating pad and surrounded by comfy pillows.
I added a new exercise, added a new prop (rice bag) and learned the correct way to stand.

 The excercises is a  little complicated for me, but she said I would get the hang of it.  It is amazing how a hard it is to understand your own back curves. Having never seen it from behind it is impossible to envision which direction they go in.

As I left her office my therapists face lit up and she said "you did get taller!!!"

First finding out

It was when I was when I was 9 that I remember the phone ringing.  My mother picked up the corded phone - (yes the kind attached to the wall with the rotary dial) and began to get very emotional.
She had barely hung when I found myself bent over in the kitchen.  My aunt had called to tell her that my cousin had just been diagnosed with scoliosis and that it was hereditary.

As she examined my back she started to panic.   She obsessively checked my back every second she could. For the following week, I found myself paraded in front of neighbors, relatives and anyone else willing to look - all confirming at something was not right.

I guess at one point we landed in a doctors office for the official diagnosis. I had scoliosis.

Purpose

Okay....this is a risk for me.  I have decided to share my story of living with scoliosis after years of trying to hide from it. I am 49 years old and have had scoliosis since the age of 8.
I always felt that talking about it would "draw" more attention to it. After being in a back brace through the awkward middle school years, the last thing I wanted was to create any kind of discussion about my back

Lately my curve has taken a turn (literally) for the worst and the pain is no longer deniable.  I have been forced out of hiding to explore treatment options. My goal through this blog is to take you along with my "healing" journey so that others may learn from my experience.

~ Pam