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marianm803
01-13-2005, 09:06 PM
What a great forum! So glad to find all of you.

My story: I was school-screened in the 9th grade (1990) and diagnosed with mild scoli. Ortho said that my growth plates were closing and wouldn't need surgery or bracing. No pain.

Fast forward (1998): My upper thoracic vertebra start to feel tight and 'pop' every time I move my left arm back. Constant muscular discomfort there.

Fast forward (2000): My lower back really hurting (I think it's because I'm on my feet all day). Water, yoga, & good shoes help, but then it starts to pinch when I breathe deep. I freak out and see an Ortho. He takes xrays, says do what you can to manage the pain, and come back in 4-5 years with another set of xrays and we'll revisit options.

Fast forward (2004): I've done ongoing chiropractic, homeopathic, yoga, water, massage, exercise, heating pads, etc... and I'm getting shooting pains down my arms into my fingertips, sciatica (shooting nerve pains down my leg), constant back aches, headaches and 'popping' down the length of my spine. I get another set of xrays.

NOW: I've met with an orthopedic doctor at Kaiser and upon comparing the two sets of xrays, both curves have progressed to 60 and 50. Dangit. I've been referred to see an orthopedic surgeon and discuss surgery. I've ordered Dave's book and am settling in to do some heavy research. I've already been told "you're young (28), do it now before you have kids," "Rolfing will correct the curve- I've seen pictures!" and "you'd be a fool not to get surgery."

And so it begins. Thanks for being here, for the information and your willingness to share your stories- it feels much better to know I can have a place to ask questions (my current obsession is the chance that I'll die during the surgery :p ).

Thank you!
Marian

jennyc
01-14-2005, 10:07 AM
Marian--

I might have missed it, but do you know the degree of your curves before this last set of x-rays? That is, what was the progression from 2000 to 2004? This is relevant because, as I'm sure you will learn from your research and talking to surgeons, one of the major considerations regarding whether to perform surgery is progression of the curve. In addition, the more severe the curve, the less correction you will get (that is, if the curve continues to progress and you wait to perform surgery, the percentage of correction will likely be less than if you had the surgery sooner). Another factor weighing in favor of doing it sooner rather than later is that it is simply easier to recover from surgery when you are younger and healthier.

Dave's book is very helpful, as is this forum and communicating with people who have been through it. But it is critical that you find a surgeon you trust.

(Just a bit of my own background: I had surgery last year, at age 32, to correct my 45 degree thoracic curve, fusing T-4 through T-12. I am now totally healed and all restrictions have been lifted. The corrected "curve" is almost impossible to measure--my surgeon said it was about 3 or 4 degrees. Also, I had a compensatory lumbar curve that was 35 degrees prior to surgery. Without any fusion of the lumbar spine, it has corrected itself to about 20 degrees.)

Best of luck.

Jen

Blondie
01-14-2005, 10:45 AM
Just a "few" words of advice that may avoid post-up complications (if you opt for surgery)that might even safe your life. I'm an Rn and my daughter just had spinal fusion with rods and clips. She developed fluid in her lungs due to a combination of inmobilization and poor nursing care. First thing you need to do is find out how soon and how you can be turned in bed (safetly)so that this won't happen to you. Do your breathing excercises even if it hurts like heck) Secondly, take someone who is looking for your best interests with you and who will stay with you from begining to end (if you have a nurse even better!) Have this person keep a log of everything that goes on, asks questions, (you'll always want to know who is the charge/head nurse on that unit/shift, or the medical supervisor or patient's advocate for the hospital). Shortness of breath is not normal, and you may need respiratory treatments to keep your oxigen saturation no less than 92%. Another potential problem is having to go for diagnostic tests. Don't assume that everyone who is participating in your care knows what your post-op physical restrictions are! You or your friend/family member needs to remind them. Your goal is to improve your health. Don't worry about being a pain...

brokenangel
01-14-2005, 10:59 AM
Hi Marian

I am kinda new here, too, been lurking for awhile. I was diagnosed many years ago at 11 (1973) and basically had nothing done. The doctor said physical therapy should help. I was never told what my curve was, etc. Fastforward to 2005 and after YEARS of battling with Kaiser Permanente who over these many years did nothing, I finally threw a terrible fit (I am certain they still whisper my name in the halls of member services). I was referred to Dr. George Picetti who is a Godsend. After many years of darkness, there is light!! I am 42. My curves are 52 lumbar and 33 thoratic, and my spine twists to the right (my kids love to say I really am bent and twisted!) I am considering surgery. The idea, quite honestly, scares the dickens out of me. He wants to fuse 4 discs, possibly all the way down to my pelvis. So, while I would have perfect posture, my bending ability would be severely impacted. However, he says the pain would go from the level 8-9 it is now, to 2-3. The pain is constant, mostly in my back but often my entire right side is effected (I call it Right Syndrome). I cannot stand or sit for long, cannot lay on my stomach or walk for extended times . My right leg and arm are numb (tingly like when your foot falls asleep) most of the time. I have 4 kids and a husband who is somewhat supportive. I work fulltime so it would impact that, too. I am going to try having the nerves deadened to see what that does. I pray for the best for you!

marianm803
01-14-2005, 09:17 PM
Thanks all, for your feedback.

I was called back by my Kaiser Ortho Doc to come in for another exam (she said she forgot to do a thorough exam last time??) and she said that my curves had progressed from 52 to 68 degrees (Thoracic) and 35 to 43 (Lumbar) since 2000. Not good! I got copies of my xrays in preparation for the 'second opinion' and have been referred to a Ortho surgeon named Gorek (I'm in the SF Bay Area) so we'll see how that goes.

As for having advocates around, my mom and aunt are both nurses, and my husband is anal-retentive so I think I'm in good hands.

I swear that as soon as I knew my curves had progressed my back started feeling worse... psychosomatic? Permission to admit pain? From what I've heard, there is plenty of time for back pain (post-op)!

Thanks for all your input! I'll keep you posted.
Marian

Kathy McKeon
01-23-2005, 11:53 AM
Hi-you are in a similar position to my daughter-who is heavy into denial! I want her to be re-checked, before she gets married and has kids, but can't convinvce her to be seen. I had fusions when I was 10 and 16 and need more now-I'm also heavy into denial (age 52)! I advise my daughter to go ahead and I'm pushing her and dragging her to that end; I guess I would urge you to do the same thing. IF it would be a choice to have your baby, or abort the baby, or have surgery (and I'm not sure if those options are there-does anyone know?) and hope the baby makes it, I'd say do it now before you have to think about another person besides yourself. My pregnancy went very well-I was 24 then. She was breech the entire time-almost like God knew I couldn't carry her any other way! I was done my surgeries by then and somewhat stable. I really believe that if you need surgery, do it and be done with it so you can get on with your life. The younger and healthier one is, the better the outcome. Oh, dear! The nurse and the mother in me really came out, huh?! I had to stop working at age 35, so buy good disability insurance - which I didn't know to do! Scoliosis is so variable and the end results are so different. Good luck!