Introduction and Questions

[KBeckham]

Hello - I'm very happy I found this forum. My name is Kristi - I'm 38 years old and had scoliosis corrective surgery with harrington rods when I was 13. I have an "S" curve, but I have no idea of the degrees.

Recently, I started experiencing severe pain in my low back, left buttock area. After many doctor visits to my GP, Emergency Room, Neurosurgeon and Orthopedic Surgeon, I was diagnosed with Spondylolisthesis and flatback syndrome. Both my Neurosurgeon and Ortho have recommended that I have my L5 and S1 fused (these are apparently the only 2 vertebrae in my lower back that have not been fused). In addition, one of my rods is broken and there's an area at just below the broken rod that has not fused properly. I will know more after the 25th of June as I'm having a CT scan (not sure what it's called, but I know that I'm getting dye injected into my spine) and a bone scan.

My ortho has mentioned revision surgery wherein he would remove either all of the hardware, or the lower portions of the rods and associated hardware, rebuild a curve in my spine, and install new hardware in my lower back. Ack...

For the people that have had revision surgery, do you regret having the surgery? Is your quality of life better for having done it?

Also, most of my research has centered on my lower back, but I've noticed that my upper back (between my shoulder blades) doesn't feel that great either - I've always had pain there, but just associated it with the surgery I had when I was 13 and tried my best to ignore it - now I'm wondering if that's a mistake. Is anyone aware of any condition that is associated with harrington rods and the upper spine?

I've spent the last two weeks reading most of the posts on this forum. I was amazed to discover that other people are going through, or have gone through, exactly what I'm going through right now. It's nice to know that I'm not alone.

Thank you.

[debbei]

Hi Kristi,

I'm not able to give you any input as far as revision, but I just wanted to welcome, and that I'm sorry you were having problems that drove you here. This is a great site to get support and advice from many people. It has been invaluable to me for the past month or so.

[Susie*Bee]

Welcome!

Hi Kristi! I just want to welcome you too. I also can't help you with revision info-- other than to say that I've seen that some have had really good success, and others are still working on it. I'm sure you'll hear from some of them. Best wishes as you try to figure out your next step... Susie

[Diane BCSW]

Hi Kristi

Just chiming in and saying welcome. It seems no matter what you ask in here, someone is good enough to answer, and usually quite knowledgeable. I've had four revisions and continue to have problems. I'll know more about my current problem on Wednesday, July 25th, when I have a Xray. I've talked about what the four prior revision surgeries were in previous replies, which perhaps you've seen, so I'll not repeat them here. You asked, if after having revision surgery, whether or not one regrets having it and is the quality of life any better. To me, after learning your rods are broken, there's really no choice but to have the problem corrected. But I'm lucky enough to have wonderful insurance through my job. In addition, the company I work for has continued to pay my salary throughout all five surgeries. If I didn't have these things going for me, my decision might be different. These are very expensive surgeons. After each surgery, my hopes have been so high and I've followed doctor's orders to a T. Perhaps since I have osteoporosis, it factors in my lack of true recovery. Over the last year, it seems I'm good for only a couple of months or so after each long recovery period. Earlier, I was reading other new postings, one by Taylor and the other by Shelgel or Shelgirl (not sure which is right) and their stories just broke my heart. I've been dealing with scoliosis and kyphosis only since 2000, when both gradually crept up on me. Those members have been dealing with it their whole lives. Their stories make me grateful for the short periods between surgeries when I was almost normal. Even able to square and round dance. But haven't done those in about a year. Also grateful for the many years I had before 2000 when I merely had lower back pain that bothered me while driving or riding in a car or while standing for long periods.

Hang in there and keep posting your questions in this forum. It's a comfort to be able to write something here and know the readers understand exactly where you're coming from and what you're dealing with.

[Theresa]

Kristi,

Before my last surgery that fixed my flatback I had pain in the upper portion of my back. You are fighting gravity all day long and usually by the end of the day when you are all warn out you are leaning even more to the front. The pain wasn't in one particular area, just a general overall feeling of pain. I couldn't walk for long without the use of a cane or a shopping cart. So, yes, I am very glad that I had the problem fixed and would do it over again!

[KBeckham]

Thank you!

Thanks for the welcome.

Just to further vent because it feels really good to "talk" with people who understand where I'm coming from

By the end of the day, I can hardly lift my left leg and if I don't pay attention, I'm leaning forward horribly (in fact, I have asked a co-worker to let me know when she see's me leaning forward so that I can correct myself) I can walk without assistance, but have been avoiding walking for long periods of time. I'm pretty sure after about 20 minutes, I'd have to drag my left leg.

One of my fears is that this condition will eventually cause me to have to walk with assistance whether it be a cane, a walker or a wheelchair. I've expressed this fear to my ortho, who seems to agree that if something isn't done, I will require some type of assistance.

Theresa: May I ask how old you are? I ask because I'm wondering if getting the revision surgery sooner rather than later would better serve me. I know the older I get, the more time it takes to heal, ect.

Thanks again for all your input.

[Theresa]

Kristi,

I was 51 last year, almost 52 when I had my last surgery. The younger you are the better.