I have not been here for a long time!

April 18, 2010

My name is and I think the last time I posted here was about 4 years ago.

A little history - I am a 44 yr old female who had Harrington rod surgery when I

was 12 for an S curve in my thoracic area. I lived many years with no problems

and did not realize there would be any problems until I started having lots of

back pain (more than the normal - I have always had the in betweent the shoulder

blade pain - just lived with it). I went through PT a couple of times when pain

was bad and it did help and I went on. Last MRI I had was about 3 or 4 years

ago and showed Degenerative disc disease, bulging discs and arthritis with my

major problems below my rod. The MRI could not comment on my Thoracic area as

it said the rod impeded the image. Anyway since Jan this year I have been in

more pain than probably ever - somedays better than others. I moved to a new

place and have an appt with an ortho at U of M hospital. I just made this

appointment myself because I know something bad is going on and I do not have a

family dr in my new area. I started seeing a Chiro dr. because my insurance

pays for it and she said below my rod I am really twisted and have a big curve

from about T12 to L5. She agrees I need to see an ORTho asap and even advised

me to go to ER so I could get an MRI before I see ortho since Ortho will not

order one until he sees me. She agrees that she thinks I have a herniated

thoracic disc which is rare but not uncommon with someone who has my issues. I

am having radiating pain through my right rib cage which is the side where my

rib hump is at. If I push with my hand on the left side of the vertebrae in the

area then I have huge pain radiating to that point. It does not hurt if I push

on the other side of the spine. Any way I am just looking for advice! I am a

single parent to a child with Down syndrome and cannot afford the time for

surgery. I am hoping PT will work again, but this pain is different and I

cannot even work out. i am having tremendous pain sitting and sleeping and it

is better standing although even that is getting worse. ANy advice is great!

TY!

April 18, 2010

,

I'm glad you are proactive, and made an ortho appointment. Where are you located exactly? Who are you seeing?

As for tests, allow the doc to order what he/she wants, and with offices and techs they are happy with and do quality work, makes for less repeat x-rays and tests.

I think you are looking to hear that with PT whatever is going on will go away, or at least be tollerable. Buying time for some is possible, but that completely depends on exactly whats going on. Time ticks on, and this mess does progress, and eventually one tires of the pain and disability, and surgical intervention seems like hope, but you have to do what works for you.

So for now, see what is exactly going on, see at least a couple doc's for opinions. Let us know where you are at and we can suggest doc's in your region to visit. The post Harrington Rod spine is a complicated thing, and many ortho's aren't up to the task, so ask very pointed questions to who you see, do they handle post Harrington Rod patients often? How many revision surgeries have they done?

As for coping skills, many find some level of relief with swimming. PT does help many. Pain mgt can also be of help. Massage can be good too.

If surgery is necessary, do you have friends and family around to help with your child?

Another thing you can do to help with your doc visits is to gather all the info you can to take with you. All the x-rays, MRI's, office reports, surgical reports, anything you can get your hands on. Going forward ask for copies of everything. It's your body, and it's best to keep this stuff yourself, so you have it, and it doesn't get lost or over time shelved or destroyed. I kept a binder with everything in it I could get my hands on. Keep all insurance correspondance in there too.

I wish I could say do this or that, and it all will become better, or at least easier, but I can't. Take it one step at a time, see docs, see what is up with you, and proceed from there.

Let us know when your appointment is and with who and we will put it on the groups calendar, and let us know how the visit goes.

I wish you much luck!

Colorado Springs

[ ] I have not been here for a long time!

My name is and I think the last time I posted here was about 4 years ago. A little history - I am a 44 yr old female who had Harrington rod surgery when I was 12 for an S curve in my thoracic area. I lived many years with no problems and did not realize there would be any problems until I started having lots of back pain (more than the normal - I have always had the in betweent the shoulder blade pain - just lived with it). I went through PT a couple of times when pain was bad and it did help and I went on. Last MRI I had was about 3 or 4 years ago and showed Degenerative disc disease, bulging discs and arthritis with my major problems below my rod. The MRI could not comment on my Thoracic area as it said the rod impeded the image. Anyway since Jan this year I have been in more pain than probably ever - somedays better than others. I moved to a new place and have an appt with an ortho at U of M hospital. I just made this appointment myself because I know something bad is going on and I do not have a family dr in my new area. I started seeing a Chiro dr. because my insurance pays for it and she said below my rod I am really twisted and have a big curve from about T12 to L5. She agrees I need to see an ORTho asap and even advised me to go to ER so I could get an MRI before I see ortho since Ortho will not order one until he sees me. She agrees that she thinks I have a herniated thoracic disc which is rare but not uncommon with someone who has my issues. I am having radiating pain through my right rib cage which is the side where my rib hump is at. If I push with my hand on the left side of the vertebrae in the area then I have huge pain radiating to that point. It does not hurt if I push on the other side of the spine. Any way I am just looking for advice! I am a single parent to a child with Down syndrome and cannot afford the time for surgery. I am hoping PT will work again, but this pain is different and I cannot even work out. i am having tremendous pain sitting and sleeping and it is better standing although even that is getting worse. ANy advice is great! TY!

April 19, 2010

Hi ,

I know it is a whole lot to deal with at once. You may want to visit

www.spineuniverse.com, they have a doctor search there that will help you find

spine docs that deal with adult scoli patients that had surgery in their younger

years, like most of us. It is surprising how many ortho doc's just shrug their

shoulders as if to say, what do you want me to do? Well, their are surgeons who

specialize in our condition. The website is a wealth full of information. I

think I spent days their after Dr. Glazer used terms I had never heard before to

define my flatback condition. It was a great help to me. I know how overwhelming

it is. It is tough to know where to start but I believe education is the key to

understanding our own conditions and it helps to have the knowledge so that you

can have a productive conversation with the surgeon. In the Files (left side) of

this website their are files that help outline questions you might have.

We are glad you came back and hopefully we can help support you as you venture

down this path. C

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> My name is and I think the last time I posted here was about 4 years ago.