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View Full Version : Congenital Scoliosis treated at age 7



heatherf
09-03-2011, 11:22 PM
I am new to posting but have viewed this site from time to time and found it very helpful. It has been very hard for me to talk with anyone about all of my health issues, but being on here and hearing so many brave people dealing with similar situations has really helped.

I am wondering if there was anyone with experiences concerning 20+ years after rods, persistant pain, and what seems to be shrinking. I had my rods put in at the age of 7, but it probably would have been earlier had it not been for the need to treat my congenital heart defect first. I had another at the age of 9, where, to my understanding, they took a rib and fused it in front of my spine because it began to curve a different way once the rods were in. I am unsure of the exact degree of my curve, specifics about my fusion sites, and such, and I have had a very hard time finding anyone who had these things done at this early of an age. I am now 29 and a mother of two, did not experience any difficulties with labor due to the soliosis, but I often, often am in pain. I have had herniated discs and was recently told I probably have degenerative disc disease, but my doctor really did very little, spent at most twenty minutes with me, and said try some PT. I have, and I do these as often as possible, but I still have pretty constant pain. It hurts in various places at various times, and I lay down and it's as if I can feel the entire length of my spine because it just aches so bad. All I am told is basically 'you're going to have pain. you need to deal with it'. It is getting harder and harder to deal with and my husband has noticed more and more the effect it has on my gait, the way I wear through shoes, and I have even lost height. However, again, my doctor did not see have any concerns as far as curve progression or needing anything further done when I saw him last year. Sorry for all of the background, but some questions I have are:

1) Can I really be shrinking at the age of 29? This is hard for me to swallow; I know it will happen with aging, but I'm already short and uneven a lot and don't need help.
2) Does anyone know if orthotics or any specific types of shoes really help? I have found I tend to walk with my right foot pointing out, and the wear on my shoes, especially the outside of my right heel, is horrendous.
3) Is anyone familiar with Sean Jackson of KUMC? I was originally with Marc Asher, but got transferred to Douglas Burton when he retired. I have always reluctant to go (went about 15 years without going) because it has always seemed if I went there was more that had to be done, but I know I need to. I just am not happy with the two times I have been to Burton and would love to find someone else in the area if possible.

Thank you!

JenniferG
09-04-2011, 12:36 AM
I am sure someone with far more knowledge than me will offer you some advice but to me, your doctor seems lacking in consideration for your pain and feelings. At 29, you need to be able to hope your life will be a lot better than constant pain and shrinking height. I get the feeling you need to see a top Revision Surgeon, and perhaps have a ct scan to see if there are areas of non-fusion which might account for the pain and shrinking. There are many on this forum who've had successful revision surgery, for various reasons, who will hopefully, offer you some advice and perhaps the name of a good surgeon near you.

You've taken the first step and hopefully the next step will be seeing a well recommended surgeon who can guide you on the next step on the way. Wishing you the very best of luck.

heatherf
09-04-2011, 11:13 AM
Thank you for the well wishes and your thoughts. I am so reluctant to ever go to the doctor that these last two experiences have just compounded the problem. But I do have an appt. set with my regular dr so I can hopefully ask some questions and get some contact info for other specialists in the area. All my experience with drs has said that I should just deal with it, but it does seem very difficult to imagine all of the years ahead of me with this pain. Thank you again, and I was very glad to see that it said you were '22degrees and pain free' :) Best of luck!

titaniumed
09-04-2011, 01:57 PM
Heather

I wouldn’t worry about shrinking too much, it happens to all of us for various reasons. The main thing here is managing your pain which can be done several ways. I like hot baths the best.

Revision surgeries can be complicated. One of the reasons is due to existing scar tissue. You can see why many Doctors will hesitate given the circumstances. The surgeon that you see will have to be one of the best, one who does many revisions. Even so, this surgeon will want to justify and try all non-invasive actions first before going in. This is the logical method. Surgery is usually a last ditch effort.

With your history of herniations, DDD, and pain, it seems that you should be referred. Dr Lenke really isn’t that far from you, it might be worth a trip and see what he says. He is one of the best.

Ed

heatherf
09-05-2011, 02:42 PM
Ed, thank you for the info. I will look into Dr. Lenke as well if need be. Thanks!