Re: Re: 'Ailina in Louisiana

[Guest guest]

Ailina,While I " m not familiar with the layout of your state, or where exactly you are within the boarders, but I looked up on the SRS list and have two doc ideas for you. The SRS list Cam mentioned, has doc's that attend conferences, and have a better shot at knowing whats going on with you, given your fusion with Harrington Rods and the complications that can crop up years or decades later. When looking at the SRS list, look for key terms in the doc's description, such as AGING SPINE, or DEGENERATIVE CONDITIONS.

I found two such doc's in your state:Pierece NunleyShreveport318-629-5555 IsazaBaton Rouge 225-924-2424     listed there is also a PA, in the same practice: Steve Guillory.

Hopefully that helps, Cam gave you tons of good advice, assemble all you can about your previous surgery, and get consultations and see just what is going on with you.I wish you tons of luck, and welcome to the group, and hopefully you aren't anywhere near the areas that are or will be flooding, your state has had far too much to deal with of late!

Colorado SpringsOn Thu, May 19, 2011 at 6:50 AM, cammaltby <cammaltby@...> wrote:

 

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