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Old 7th May 2008, 09:29 AM
dytgem dytgem is offline
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Join Date: Jan 1970
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Hi everyone, I'm very new here, so I'll start off by introducing myself. My name's Sarah, I'm 20 (21 on May 26th), I live in Xenia, OH and I have a 1-year-old son named Anthony. I was diagnosed with Scoliosis when I was around 13, and eventually had the double rod spine fusion surgery with the harrington rods when I was 15 in Dec. of 2002 at Johns Hopkins hospital in Baltimore MD. Since then, the doctors tell me I have a "disengaged" rod in my lower back, but I like to say it's broken, it looks broken to me on my x-rays anyways. I've also had chronic back pain since having surgery, I get what I call a lump on my lower back where my rod is broken very often it must be a muscle spasm, and just recently I have bruising that shows up running along my scar on the right side of my back for no real reason and my doctor doesn't know why any of this is happening. I also get what I call phantom pains every so often, it's a very very intense pain that envelopes my entire torso, and all I can do is wait it out and try not to cry and lose my mind when it happens. I call them phantom pains because they just come on from out of know where. They used to happen maybe twice a year, this past year they've come on I'd say well over six times and they used to last at the most 15 minutes, this last time it lasted almost 8 hours...and my doctor doesn't know why. I've been taking Tylenol and Ibuprofen almost every day for six years, and because I've been taking them so long I have to overdose because I've become immune to them, you're only suppost to take I believe 2, well I take about 8 pills at one time....I know they cause damage to your stomach if you take them how I take them, and they aren't really working for me anymore, but my doctor won't prescribe me anything at all to help with my pain. Sorry this was so long, but I wanted to get my history out before I started this next part, which is about my topic post. Okay, today I had a visit with my orthopedic doctor because I just recently starting working at Wal-Mart and my back pain has increased because I'm standing all day for 8 hours, walking, standing, bending, doing repetitive motions and my back didn't react very well. The first night home from work my back literally felt as if it was in a vice grip, I couldn't really stand up-right, when I tried to lay down it was painful and when I did lay down I couldn't roll from one side to the other easily. Anyways, I told him everything that's been going on, and he's decided to put me into physical therapy, which I'm hoping will help me, but I'm not too sure because I've had all these problems, especially with being physical because most of my back pain comes from when I've been walking, standing, or doing any type of physical activity for a long time. But he also mentioned to me about the possibility of removing my rods, which surprised me because I didn't think they could be removed. What my questions are: has anyone had their rods removed and how did it go? Is it better or worse? Is there any information out there for me about this because I haven't been able to find any....and is anyone experiencing the same pain and/or problems I'm going through? Has anyone done physical therapy and did it help? My doctor also talked about putting me on E-Stem which I guess is something with electrical shock, like messaging your muscles with electrical shock? Has anyone done that before and if so how did it go? Thanks ALOT for anyone who replies and again I'm sorry this was long!
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Old 7th May 2008, 10:22 AM
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titch titch is offline
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Hi and although I'm sorry for what has brought you here.

I'm wondering if it would be possible fory ou to get a second opinion, as while I know it can be very difficult to work out what the reason is for ongoing pain after surgery, it certainly is possible to investigate it fairly thoroughly and there are things which can be tried to see if they help with the pain.

I think as you're doing research, it's important to clarify that you almost certainly do not have Harrington rods. Harringtons have very seldom been used since the early 90s, because they were discovered to lead to certain problems which just do not occur with other rod systems. I'm pretty sure that Johns Hopkins would not have been using them as Dr Kostuik (who retired some time in the early 00s I believe) was very well known as a revision surgeon, doing the kind of surgery needed to fix the specific problems that coulld occur with Harrington rods. So please don't worry if you read anything about the potential problems with them as it really shouldn't apply to you

I'm not clear from you post as to who it is that is currently treating you in terms of pain relief, suggestion of rod removal etc. Bacscially, if this is a general ortho, or even a spine guy, they probably don't really know enough to adequately assess the problem. it really needs to be a scoliosis specialist who routinely deals with adults. It's definitely correct that the rods can be removed - it's a much less nasty surgery than the original to put them in, and recovery times from the actual surgery are very good. For some people, removal can be very effective. However, as you have a disngaged/broken rod, I think you really need to ensure you're properly assessed. There could be any of several things going on, and while almost all reasons for the ongoing pain can be treated, you need the right treatment of course.

I'm not sure about the e-stim - if it is being used as another name ofr TENS, then it's actually a very common treatment for pain, which works very well for a lot of people. However, I do also recall something called e-stim being used particularly by chiropractors, to try to provide a non-invasive treatment for scoliosis in order to avoid the need for surgery and hopefully even correct the curve. As far as I know, that never actually worked for that, and I don't actually know how it compared to TENS or whether it was used for the treatment of pain. There are people here who can share their experiences of using TENS though, and I'm sure they'll be along soon

One last thing, whihc is that physiotherapy is always worth trying. For many people, back pain can result from poor strength of the core muscles, and for people with spinal curvature and especially long fusions that can be even more the case, so it should certainly help you be a bit more comfortable

It's a shame we're on opposite sides of the pond, as I've also got a one year old son who is always glad to meet other kiddies!
Diagnosed at 15 with 50 curve, but probably juvenile IS. Fused in kyphosis (by non-specialised ortho) with a/p surgery T10-L2 @ 21, posterior only revision surgery to correct kyphosis @ 29. Now 38 with further revision surgery and extension of fusion to sacrum required to correct residual kyphosis, restore lordosis and address spinal stenosis.
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Old 7th May 2008, 02:19 PM
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Kentish Kentish is offline
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Location: Rochester, Kent, England
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Welcome to SSO dytgem.

Your post could have been from me this time last year. I snapped one of my rods in 2004 and the other had become disengaged too. Since that happened, I'd get 3 types of pain: around the area where the rods had broken, a creeping pain that started on my spine but worked its way around to my stomach via my right side, and also a horrible shooting nerve pain down my right leg. When I told my surgeon of these pains back in 2004, he didnt really know why it was happening but felt that having my rods removed might help with one or 2 of the types of pain but wouldnt cure me. Because of this I decided it wasnt worth going through if it wasnt going to cure me. Big mistake.

I had my rods removed in January of this year because the pain had made doing anything impossible. The surgery took a little over 2 hours and was very minor compared to the fusion. It doesnt usually take that long but I had a lot of fluid building up by the broken rods due to an infection which also needed cleaning up. Within 24 hours of the surgery I noticed that all the pain I'd been suffering had completely gone. Its 4 months now since I had the surgery and still have absolutely no pain.

I wouldnt recommend surgery just because its been so successful for me but definately look into it as an option. I didnt believe that all my pain came from my rods but I was very wrong. Physio wasnt an option for me as walking for as little as 5 minutes would trigger the pain so surgery was my only option.

Anyway good luck and I hope you find something soon to help sort your pain out
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Old 7th May 2008, 07:37 PM
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GillyG GillyG is offline
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Hi there, just wanted to welcome you to the site

I haven't had any problems with my rods (yet :-o ) so I'm afraid I can't help you there, but I have found physio helpful in building up my core stability muscles. However, I think it might be difficult for you to get much out of it if you're in such a lot of pain

I would advise getting an appointment with a scoliosis specialist and discussing the option of rod removal in more detail, especially with one being displaced/broken as this could be causing the pain in the first place.

Please let us know how you get on, and in the meantime, if you have any questions just ask away - there's usually someone on the site who can help

Gilly xx
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Old 8th May 2008, 02:51 AM
dytgem dytgem is offline
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First, I want to thank everyone who has replied to my post so far and all of your information and stories has been very helpful to me. Well, about my rods, my current doctor, who is Dr. Albert at Childrens Medical Center in Dayton, Ohio says I do have the Harrington rods. If from what I understand they cause problems I don't know why my doctor who performed my surgery, Dr. Sponsellar at Johns Hopkins in Baltimore MD put them in me. When I was diagnosed with scoliosis, I had the double S curve, plus they said my spine was twisting also, so maybe he had a reason to put those rods in you can see I don't know a whole lot about this. Even though I am 20, the reason why I'm being seen by a pediatric orthodaedic doctor is because there aren't any other doctors in my area who do this sort of medical work or whatever you call it, and I've tried looking for another doctor to go to for a second opinion, and Dr. Albert does do the Scoliosis surgery for the hospital here. The reason why I had my surgery in MD is because I was basically a kid and my mom thought Johns Hopkins would be the best place to go for a surgery of my magnitude. So, he's really the only one I can go to, and I can't afford to go to Baltimore again, and I'm sure Dr. Sponsellar would tell me the same things Dr. Albert has. However, I am very interested in learning more about having my rods taken out, I didn't think this surgery would be as major as the first one, so I'm not going to rule that out...that is unless my doctor believes it wouldn't help me. But I can't seem to find any information on the net about it, does anyone know of a website that has information about it? And another thing, my mom and I were talking about people who've had surgery with any type of implant or whatever and sometimes their body will reject it...Is it possible that not only is my back pain coming from my disengaged rod, but maybe that my body has never accepted my rods? Or is it a possibility that I'm allergic to them in some way that causes the pain, bruises and swelling?

Titch - Thank you for all of your information, you've greatly helped me! That is too bad that you're across the pond, my son loves meeting new people also!

Kentish - Thank you for telling me your story, it has really given me hope about rod removal!

GillyG - Thank you also for your input! And I really hope your rods never give you any problems!
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Old 8th May 2008, 06:32 AM
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Amazed Jean Amazed Jean is offline
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Location: Edmond,OK USA
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Hello and welcome to SSO. I'm afraid I'm not help in surgerical dept. but can encourage you to seek a second opinion or at least get a copy of your current xray and send it to a scoliosis specialist to have a look. Perhaps back to Johns Hopkins. I have been up to Twin City Spine in Minnesota and was seen by Dr. Jon Lonstein. I felt that he was very knowledgible and quite candid. He doesn't sugar coat anything and is pretty well respected in the scoliosis field. If you can't see him - perhaps you can tell him via email or telephone where you are and what you need and ask him to suggest someone closer to you.
I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.
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