RE: not sure I still belong

February 4, 2010

Jana,

I know that this is a lot of info to wrap your head around. Many of us have had hooks come loose, over the years post op both of my hooks became displaced. Many have increases in their curves, many reasons for that, from fusion that didn't really happen, to normal increases with time, cracks in the fusion mass. Whatever it is you need to get to a surgeon well versed in Flatback and the post Harrington Rod spine.

Your harrington was there to support your spine during the healing phase and building and forming of a solid fusion mass. Changes in your upper spine, either an inward curve, or outward( not side to side) or a flattening of you upper spine needs to be checked by a doc.

You didn't say what levels you have fused, when or where, where you are located now, and who you are being refered to.

I would say your best bet is to go to the Scoliosis Research Society page, just google them, and the have a doc locator there, by city, state, and country. Look for a doc with aging spine in their description.

Fixing all this crap is tough, and since you didn't list your age or other medical problems, my guess is that is you are healthy, have good bone quality, and aren't too advanced in age surgery to correct your problem maybe possible.

What led you to a chiropractor?

Another step for you is gathering all you can of your past medical records, office notes, surgical reports, etc. Many of us rely on family memories of the details of our surgeries as we were children, and time fades memories, some info can be lost, forgotten, or plain remembered incorrectly. So gather what you can it will be helpful when seeking out opinions for what is going on now.

I know these appointments all these years later can be scary, so much to absorb, and also relief knowing that yup, it's a mess, and now what.

I've been there, it's tough to hear and deal with, but take it one step at a time.

So my suggestion is to get to a good doc who GETS US, and see what is possible for you.

Look forward to hearing more, and who you see for opinions, hang in there!

Colorado Springs

[ ] not sure I still belong

Well, I went to a biophysic chiropractor today. (I was so shocked!!!) Found out my herrington rod is not holding my spine anymore. Not sure when it stopped. Pre-surgery I was 55 degree, post-surgery I was around 5 degrees. Thirty years later (never check during that time) I'm back to 47 degrees. We are not sure that the top hook is in place properly. I'm being referred to an ortho-spine Dr.I found out I have "flatback" in the upper part of my back not where the typical flatback is. I don't know that I belong in this group anymore. They found an "extra" piece of vertibra in my lower spine and a congential defect in my pelvis. I suppose all above makes a good reason that my SI joint is tweeked out like it is. Still unsure of what the percent range of success for fixing all this crap at time in my life. Whats next?

February 4, 2010

Hi Jana,

You sure do belong in this group, this site is full of information and people who can lead you to the right doctor to get the help you need. Most of us here have problems many years after our harrington rod surgery, and have had revision or are facing the fact it might be in our future. It seem like most here are in their 40's and 50's some younger and some older. Please find a specialist and get the help you need, you may have to travel depending on where you live.

Deronda

From: Jana <oceantbear@...>Subject: [ ] not sure I still belong Date: Thursday, February 4, 2010, 8:05 PM

Well, I went to a biophysic chiropractor today. (I was so shocked!!!) Found out my herrington rod is not holding my spine anymore. Not sure when it stopped. Pre-surgery I was 55 degree, post-surgery I was around 5 degrees. Thirty years later (never check during that time) I'm back to 47 degrees. We are not sure that the top hook is in place properly. I'm being referred to an ortho-spine Dr.I found out I have "flatback" in the upper part of my back not where the typical flatback is. I don't know that I belong in this group anymore. They found an "extra" piece of vertibra in my lower spine and a congential defect in my pelvis. I suppose all above makes a good reason that my SI joint is tweeked out like it is. Still unsure of what the percent range of success for fixing all this crap at time in my life. Whats next?

February 5, 2010

Thank you. I'm 46 next month and have never had my back checked since surgery in

1979. I have been wanting to get this checked for a while now and am so glad I

did. Yet on the same token; I have a ton more questions. I will be searching for

a specialist now, that is for sure. My resources are limited as I only have

state health insurance. I put in for disability (SSI) a couple of months ago and

was denied, but I didn't have this info. Not too sure it will help anyhow. I

don't have much faith in the system...maybe I'm just down from all the news.

Once I gather my thoughts I'll start checking stuff.

Again thanks for the encouragement.

>

> From: Jana <oceantbear@...>

> Subject: [ ] not sure I still belong

>

> Date: Thursday, February 4, 2010, 8:05 PM

>

> Â

>

> Well, I went to a biophysic chiropractor today. (I was so shocked!!!) Found

out my herrington rod is not holding my spine anymore. Not sure when it stopped.

Pre-surgery I was 55 degree, post-surgery I was around 5 degrees. Thirty years

later (never check during that time) I'm back to 47 degrees. We are not sure

that the top hook is in place properly. I'm being referred to an ortho-spine Dr.

> I found out I have " flatback " in the upper part of my back not where the

typical flatback is. I don't know that I belong in this group anymore. They

found an " extra " piece of vertibra in my lower spine and a congential defect in

my pelvis. I suppose all above makes a good reason that my SI joint is tweeked

out like it is. Still unsure of what the percent range of success for fixing all

this crap at time in my life. Whats next?

>

February 5, 2010

,

You are right, my head is just swimming. I don't know if my hook is in place or

not, nor do I know how long I've had this 47 degree curve.

I don't know a lot about this right now. I was 16 when it was done 30 yrs ago.

No medical records except these recent things. All I know is that I had a 55

curve, surgery fixed it to 5 degrees. There is nothing else except that it is

inherrited in my family and we have Ehlers Danlos too. I am above average in

being flexible according to the medical people. ( I think I'm just a genetic

carrier for this)

I believe that I am fused at L1-L5. Then I have a single rod in place (so I

thought)This was all done at Shriners in Portland back in '79. I now live in

Nampa ID. Dr. Betz is referring me to Dr. King he is in the Boise ID

area. I want to get my Primary Dr. to refer me to Dr. Floyd also of

Boise. I don't know if the insurance will pay for second opinions. I think both

of these Drs are on the scoliosis research society page.

I have gone to chiropractors before a few times, but this time I was actually

surfing for flatback info and SI joint issues (where I get extreme pain) I came

upon biophysic chiropractic site, liked the info and decided to call and at

least get an eval. My primary Dr had sent me to PT to work on the SI joint, not

really helping it stay in.

I'm not really scared...I'm more MAD! All the braces, surgery, casts...for what.

I'm back where I started. It is a relief to know that my issues are structural

and not just me being lazy. There is actual reasons why I get so tired, sore,

and prefer to stay in my corner of the couch. Now what...yep your right. I'm

licking my wounds right now and once I'm done feeling sorry for myself I'll do

the research and weigh my options.

Finding a primary doctor that " GETS US " is my biggest issue. At least now I'm

armed with proof that I need to go to specialists.

Oh, my health is not great but not terrible. I'm 46, 188lbs, 5'1'ish,I have

diabetes, asthma, alergies and all these back issues. I've had 13 total

surgeries for various reasons, from brain surgery for a prolacinoma tumor to

knee surgery for torn meniscus. So I guess you could call me a tough old bird.

LOL

Thanks for the support.

>

> Jana,

>

> I know that this is a lot of info to wrap your head around. Many of us have

had hooks come loose, over the years post op both of my hooks became displaced.

Many have increases in their curves, many reasons for that, from fusion that

didn't really happen, to normal increases with time, cracks in the fusion mass.

Whatever it is you need to get to a surgeon well versed in Flatback and the post

Harrington Rod spine.

>

> Your harrington was there to support your spine during the healing phase and

building and forming of a solid fusion mass. Changes in your upper spine, either

an inward curve, or outward( not side to side) or a flattening of you upper

spine needs to be checked by a doc.

>

> You didn't say what levels you have fused, when or where, where you are

located now, and who you are being refered to.

>

> I would say your best bet is to go to the Scoliosis Research Society page,

just google them, and the have a doc locator there, by city, state, and country.

Look for a doc with aging spine in their description.

>

> Fixing all this crap is tough, and since you didn't list your age or other

medical problems, my guess is that is you are healthy, have good bone quality,

and aren't too advanced in age surgery to correct your problem maybe possible.

>

> What led you to a chiropractor?

>

> Another step for you is gathering all you can of your past medical records,

office notes, surgical reports, etc. Many of us rely on family memories of the

details of our surgeries as we were children, and time fades memories, some info

can be lost, forgotten, or plain remembered incorrectly. So gather what you can

it will be helpful when seeking out opinions for what is going on now.

>

> I know these appointments all these years later can be scary, so much to

absorb, and also relief knowing that yup, it's a mess, and now what.

> I've been there, it's tough to hear and deal with, but take it one step at a

time.

>

> So my suggestion is to get to a good doc who GETS US, and see what is possible

for you.

>

> Look forward to hearing more, and who you see for opinions, hang in there!

>

> Colorado Springs

>

> [ ] not sure I still belong