New and trying to stay Positive

[Frustrated]

I am at my end of my rope, but after reading some of the other postings; I guess it could be worse.

I was diagnosed with scoliosis at the age of 14 with a 20 degree curve to the age of 16 with at 75 degree curve, fused from T-1 to L-3. I was unable to wear my brace, because my mother had Lupus and was unable to tighten it for me.

It has been 20 years to the date, and not sure what my options are now. I have been in pain since 2000. I have been through pain management, physical therapy, steroid injections, to time release morphine, and I have just about given up.

I usually have an episode about 1 a month and can usually take muscle relaxers and stay in bed for 3 days and I am fine and can walk again. However, I am now going on three weeks, unable to stand straight up, tilted to the left and unable to walk without a limp in my right hip. I hope I am making sense.

I have had several tests CT's, no MRI's of course, X-ray’s, however I have now developed an allergic reaction to the contrast dye. I developed chemical meningitis from a myelogram and went into shock from a CT scan. There seems to be no other test that they can do to see what is going on.
I had an epidural steroid injection and trigger point injections done. Hopefully they will kick in and work at this point not sure what else to do.
No doctor will deal with me, the original Dr. at Scott and White is not longer available, but I was referred to another spine Dr. who said I was too young, and he did not suggest taking my rods out. I don’t think it is my rods that are bothering me; I think it is the other 3 disc that are wearing out.
I have been out of work now for 3 weeks, and out of time. And I have run into the fact that people are not very considerate when it comes to anything dealing with the back. I don’t know what I am asking for, just looking for some advice and glad to have others to talk to. Reading some of the post, I am illiterate to scoliosis.
Kristi

[macky]

Kristi, I wouldnt say you were illiterate to scoliosis as you have had it for long enough eh. I was just wondering if you had harrington rods put in. But 20 years ago would have been 1989 so I am not sure.

I know where you are coming from with some doctors as far as back pain goes., Under the Surgery (first time) heading there is a thread starting with "New here anybody from Texas" where there is some information. I just had a look at it and they have suggested some good doctors on there that may be able to help you.

I do hope it all works out for you, please keep on posting and welcome to NSF

Macky xxx

[Qikdraw]

Well Kristi we have a lot in common.

I'm fused T1-L4, and I'm going on 26 years from the date of surgery (1983), when I was 12 years old.

For the last 10 years or so I have had lower back problems that seemed to crop up every once in a while. I'd have to take some time off work and just relax and not do too much. Needless to say employers are not too happy about that.

In 2000 I saw one of the doctors who had done my surgery and he noted that I had deteriorating discs below my fusion. At the time he said there was really nothing to be done, and a last resort was to fuse the rest of the spine.

Last year in January I had to stop work due to shooting pain down my leg, and I hadn't slept well in over 6 months, I kept waking up and trying to get comfortable. This even interfered with sex with my wife. I can't stand, sit or walk for very long or it starts hurting pretty bad. Even Pysical Therapy I had I had to stop because it just hurt too much and the pain was gettng worse, not better. My wife usually massages me about twice a week because the knots just get built up and built up until its like a brick wall back there.

Finally I saw a doctor and she put me on Gabapentin and Naproxen, which calms my problem area enough so I can sleep. I've started going to the local gym which has a lap pool, and I just walk back and forth in it. The water supports my weight and keeps the pressure off my spine, and the resistance is good too. I've pretty much just started this, but I'm taking it slow and easy and so far its been a help.

Back when I had surgery there was no talk of PT at all, and not really any thought to what long term effects were. Now its different of course, in fact so much has changed it still shocks me.

Looking at my current xrays and I pretty much do not have any discs left back there at all. Its just vertebrae grinding on vertebrae, pinching nerves along the way. What you describe pretty much sounds like we are in teh same boat. You might talk with your regular doctor about getting Gabapentin or Naproxen, and see what they think. You might also look at finding a lap pool and just walk back and forth like I do. Its not going to be a quick fix, but it will slowly help until we are able to do some other excerises to strengthen our stomach muscles, which will help out our back.

I hope I didn't scare you with my story. I just want you to know you are not alone and there is a way to work towards being less pain filled.

Brad

[LindaRacine]

Hi Kristi...

You need to find a spine doctor who has a lot of experience treating patients with prior fusions. Where in Texas are you?

Regards,
Linda

[Frustrated]

I hope I am replying right, not sure how to do this. But yes, I did have the Harrington rods put in. Two, with eight hooks, and 2 screws. I have read the Texas post and thought I would look into it.
Thanks for your reply it was nice hearing from someone.
Kristi

Kristi, I wouldnt say you were illiterate to scoliosis as you have had it for long enough eh. I was just wondering if you had harrington rods put in. But 20 years ago would have been 1989 so I am not sure.

I know where you are coming from with some doctors as far as back pain goes., Under the Surgery (first time) heading there is a thread starting with "New here anybody from Texas" where there is some information. I just had a look at it and they have suggested some good doctors on there that may be able to help you.

I do hope it all works out for you, please keep on posting and welcome to NSF

Macky xxx

[LindaRacine]

Hi Kristi...

You're doing just fine.

I suspect that your implants aren't actually Harrington rods, as they typically didn't include segmental attachments with both hooks and screws. Sometimes, people use the term Harrington rods in the generic sense.

There are some really excellent surgeons in Texas. If you post in what area you live, someone can make some recommendations about who you might want to see.

Regards,
Linda

[Frustrated]

I was the second person that my Dr. did the Harrington rods where he used two rods, at least that is what my mother has told me, and that is all that I have heard, so I am not sure then. I am in the process of gettin all of my x-rays from Scott and White. I am located in Central Texas right in the center, between Waco and Austin, TX. I told you I didn't know much, but I am in the process of finding out. I am tired of being in the dark, when you are 16 you don't really worry about it until you get 36 and you can't walk, and you are trying to figure out why.
Kristi

Hi Kristi...

You're doing just fine.

I suspect that your implants aren't actually Harrington rods, as they typically didn't include segmental attachments with both hooks and screws. Sometimes, people use the term Harrington rods in the generic sense.

There are some really excellent surgeons in Texas. If you post in what area you live, someone can make some recommendations about who you might want to see.

Regards,
Linda

[LindaRacine]

I was the second person that my Dr. did the Harrington rods where he used two rods, at least that is what my mother has told me, and that is all that I have heard, so I am not sure then. I am in the process of gettin all of my x-rays from Scott and White. I am located in Central Texas right in the center, between Waco and Austin, TX. I told you I didn't know much, but I am in the process of finding out. I am tired of being in the dark, when you are 16 you don't really worry about it until you get 36 and you can't walk, and you are trying to figure out why.
Kristi

Wow, I didn't know Paul Harrington was still doing surgery in 1989. It's certainly possible that he would have started experimenting with screws. If you get the x-rays, I'd love to see a picture if you can figure out how to get them scanned or photographed.

It's a long way away, but if there's any way for you to get to Amarillo, there's a surgeon there, Mike LaGrone, who has treated a bunch of patients with older fusions. You can do a search on his name here and find some posts by his patients.

Also, you might want to check out this thread:

http://www.scoliosis.org/forum/showt...ghlight=austin

Regards,
Linda

[JulieBW]

Possible MRI

Others here have posted that they can't have MRI's due to distortion from the rod, but I had one with no apparent difficulty. So this could be someting to ask more about. I will add that I don't have severe problems, and haven't seen anyone with much experience with aging fusions, but my MRI was seen by an ortho who does scoliosis surgery, a neurologist, and a neurosurgeon, in addition to the radiologist who initially read the results. It seems that someone would have noticed and commented if this was a problem.

[macky]

You are lucky then Julie as then they can actually see what is going on, with you. I have two harrington rods and it just goes all blurry where they are placed in my back, MRIs and cat scans, are the same. Strange, tho eh.

Macky