'Ailina in Louisiana

[Guest guest]

Hello, everyone.I joined because I've been looking for some answers to pain I've been experiencing. I'm hoping to learn more by comparing notes with other scoliosis patients like me.1987: diagnosed with scoliosis1987 - 1989: Boston brace1989: 52-degree curve; spinal surgery and Harrington rods @ Army Medical Center (San , Tx) by Dr. Jeffery Coe.My Harrington rods are still in place. Since surgery, I've had six children with no spinal complications, and I've enjoyed comfortable mobility. The exception to this is that maybe twice a year, I experience severe, debilitating lower back pain (extends from my waist in back down to the back of my pelvis) that lasts from a couple days to a couple weeks. During this time, I can't stand up straight and can't lift any weight at all. I normally deal with it by taking Extra Strength Advil and "taking it easy" until I recover. During this time, I have to rely entirely on my family to carry things for me, move things, and pick up the baby, because I can't do those things myself.Anyone else with these symptoms? I'd sure like to know what's going on in my body.So glad to find this group...'Ailina

[Guest guest]

Hi Ailina,

Welcome to the group. Please know that we are all sorry that you are

experiencing pain, some of which may be related to the long term effects of

having a long fusion in your spine.

While I did not experience the exact sequence of pain your describe, I think

your symptoms are fairly common amongst us. Several thoughts and questions come

to mind.

First off...are you under the care of a spine specialist who specializes in

adult scoliosis patients? Typically when problems crop up long after the initial

fusion patients find that their original surgeon is no longer in practice or

only deals with pediatric patients. Finding someone who really can help you sort

through your current issues is probably worth doing.

I am just a patient like yourself and I have no medical training, so please

understand that this is not a substitute for medical advice, but I suspect if

you are managing with current regime of modifying activity and advil, then you

may want to take some time to reflect on what that means, and also examine

carefully what you were doing prior to the flare up. Can you modify your

activities to avoid more pain?

You didnt say, (and perhaps you dont actually know?), how low your fusion is. If

it extends down deep into your lumbar spine, you may be seeing the effects of

accelerated degenerative disc disease, or other results of some of your joints

having to take up the " slack " for the very fused portions of your

spine...arthritis for example. Sometimes cysts are discovered, or more difficult

conditions where the spine has essential slipped. All to say, it could be a lot

of things.

Pain is your body's way of telling you to notice something. I would say take its

" cue " and start the process of trying to understand the message. Gather old

records from your original surgery, find a good specialist, and look at all

aspects of your lifestyle (weight, fitness, amount of sitting, physical labor

etc) and see what you can learn about what is going on.

For most of us the biggest surprise in life was when we suddenly found out that

the original surgery probably was not the last, or that we were not as " good to

go " as we were led to believe as teens.

If you go to the Scoliosis Research Society website (www.srs.org) you can use

their physician locater to find someone who is geographically close and

specializes in adults. Many of us end up traveling some distance to find

qualified help so dont discount that. The chance that you will find someone in

your backyard that has the right skill set to help is low...but you may be able

to find someone who can at least evaluate you.

Take Care, Cam