New here - scared, but considering surgery

[nancylynne]

Hi everyone,

I just happened upon this forum and it's been so educational. I'm feeling so vulnerable right now and I hope to receive some advice or encouragement. I've been in a lot of pain the last couple of weeks. I've been in pain on and off for the past two years, depending on what I do, but this time's been worse than usual. Something as minor as stretching for a few minutes can set it off, which is what happened this most recent time. Yesterday, I went shopping for a couple of hours and I was in so much pain as I left that I was in tears as I drove home. If a girl can't even go shopping, then there's a problem!

I've limited my activities in the last two years because I'm afraid of the pain (and I'll be honest - I don't really like exercising much anyway). But as a result, I've gained about 20 pounds. Along with having crooked hips, extra weight certainly doesn't help my body image.

These past two weeks, I've visited two orthopedic surgeons (one was Dr. Pashman at Cedars-Sinai in Los Angeles - found his name here). I have a 30 degree scoliosis curve due to a hemivertebra between L1 & L2. These two doctor visits been so eye-opening! For the first time in my life, I've learned that something can be done to fix me! They can take out the hemivertebra and straighten me out! I thought this was something that I'd just have to learn to accept and live with. It sounds crazy, but I'm actually a little excited and hopeful, not just to be without pain, but to have a straight back/hips. I almost feel guilty about being excited about the cosmetic benefits, but having this condition has made me feel so self-conscious over the years. The thought that I could wear cute curve-hugging dresses or not have to pull up one side of my pants so they'll fall evenly - /sigh/ it would be so nice!

But then I think about the surgery itself and it terrifies me. I'm such a baby that I have to take anti-anxiety medication just to get my teeth cleaned. I'm questioning how much pain I'm in regularly and rationalizing that maybe I'd feel better if I just walked more. I'm not good at knowing where my limits are, even when it comes to pain. I don't know what to do. It all just sounds so scary.

Any advice/encouragement/experiences would be much appreciated! Thanks.

[JenniferG]

Hi Nancy, and welcome to the forum!

What stood out from your post was that you said you are a baby about these things. Nobody could have been worse than me. I'd never had more than a sniffle my whole life so to contemplate such a big surgery, I nearly lost my mind! Having an injection made me want to run a mile. I also took anti-anxiety meds and it made all the difference. In the end, I was looking forward to the surgery, just to get it over and off my mind, but also for the positive reasons of less/no pain and even the cosmetic improvements (which were unexpected and huge , as it turned out!)

The good thing is, since my surgery I'm not nearly the baby I was.

Any questions you have, please just ask.

[nancylynne]

Hi Jennifer,

Thank you for the reassurance. Fortunately, I've been lucky enough to be otherwise healthy too - not even a cavity! The most invasive procedure I've had was when I got epidural cortisone injections to alleviate the back pain (ended up making it worse ). They had to give me "twilight" sedation for that, and it totally knocked me out.

Maybe I should take advantage of the anti-anxiety meds more often! Maybe deciding to go through with surgery might show me that I'm stronger than I think I am?

I saw your before and after photos - you look great! And glad to hear you're not in pain anymore. I feel like I'm getting old before my time (I'm 37) because I've been limiting my activities more and more to avoid the pain. Doesn't bode well for the future.

I have to admit though, your scar scares me. Was that photo taken shortly after your surgery? How does your scar look now? How painful was recovery?

[LynnMarie74]

Welcome Nancylynne.......we were all new once. I will tell you, this site was a God send to me. It gave me encouragment, strength & comfort, knowing I wasnt alone & had somewhere to turn. Ask anything you need to, we'd all love to help!

[heartland]

Hi ,I know what you mean as a result of my scoliosis I was 30lbs over weight
[I was in chronic pain and couldn't workout] hopefully something can be done to stop the progress of your curves [I'm not sure how old you are but sometimes a brace can be helpful]

[Davis]

HI and welcome
It seems we have similar curve degrees. I'm waiting in the wings as far as surgery goes myself, scheduled for January 2011, but I just wanted to tell you, please DO NOT feel at all bad about feeling excited or good about having possable cosmetic benefits. It seems there's alot of people that will beat you down for even thinking it, let alone saying/typing it out. It's major surgery and very heavy but your mind and your body are your own and you'll know in your heart what the decision should be. Read everything you can and be as informed as you can. The possability of hope for us is a gift in itself. I wish you the best.

[Shari]

Welcome to the forum Nancy,

If you read back at some the older threads and posts, you will undoubtablty know you are no longer alone!!! I still remember when I found this forum, I just sat with tears streaming down my face, in relief.

We spend most of our lives trying to hide our condition, both physically and cosmetically, therefore we can't complain about something we want to hide. It makes life hard, it lessens our self esteem during our teenage years. Which by the way, makes us want to hide it. Just my opinion. But because we think we can't or don't want to talk about what we have, we turn into some of the best actors on the planet. I could go on and on, but I won't.

Just know you are in the best place you can be, on this forum!!!!

The wealth of knowledge and compassion is very encouraging and almost addictive.

Best wishes,
Shari

[Davis]

Ditto Shari

[mbeckoff]

Welcome Nancy

This is the best place.

Please ask all your questions. They will be answered as to make you feel better and more comfortable going forward

Melissa

[LynnMarie74]

Davis ~ Love the beer quote! Cool pics too!

[Davis]

Thanks I appreciate that

[nancylynne]

Thanks everyone for all the encouragement! It really helps to know that other people understand what I'm going through.

I have some questions:
For those of you who've already had the surgery, are you glad you did it or do you regret anything? Is there anything you wish you would've known about or done beforehand to help you prepare for it? Do you have any limitations to your mobility or physical activity levels (particularly those with fusions in the lumbar region)? How long was your recovery? How long before you could drive / go back to work?

Thank you!

[backissues]

I am in the same situation as Nancylynne and have the same questions as she does. I am new to the forum. Last week, I met with the scoliosis/back surgeon and was told I would need to be fused from T10 to S1 posterior. I will need to make the decision about going through with the surgery, waiting, or doing nothing. I do not have a date but it could be in December 2010.

I have pain in my right leg when I stand and/or walk for more than 10 or 15 minutes. This has been going on for over 20 years. I call it my "chronic state." I have learned to live with it by using a "cane seat" when traveling or shopping when there is no cart to push. Otherwise, I do the best I can. I can bike, kayak, and cross-country ski because I am in a bent, or sitting position. I can be pain free when sitting or lying down.

I’m really not concerned about the cosmetic change but the change to the quality of life.

My last acute “attack” was in the summer and fall of 2009, I had acute pain where I couldn't sit up or stand at all without excruciating pain. I spent the summer in a beach chair (even brought it to restaurants). I had several nerve block and epidural shots that did no good. I met with several pain management doctors and orthopedic surgeons. Because of the scoliosis, one surgeon wouldn't touch me. It is an added complication. Finally, one doctor suggested facet joint shots at L3-4. It was like magic. After 4 months, I had relief and was back to my "chronic state."

Last week, I had a myelogram. This confirmed the MRI and X-rays I had earlier this year. I have stenosis, several bulging discs, and arthritis in my back that is causing the narrowing of the canal, especially at L4-5.

This makes for an unstable spine.

I was told the success rate for such fusion surgery is 80-90%. I'm not sure if that is medical success or patient success. What happens to the 10-20% who are not in the success category?

Initially, I know there is much surgical pain. However, once that is over, is there other residual pain? If so, is it worse than what you had before?

Is anyone sorry they did the fusion and wish they had their old pain back?

Is the devil you don't know worse than the devil you know?

Thanks in advance for your input.

Irene
Massachusetts
Retired Active Female: age 65

[KathK]

Irene,
Your symptoms sounds so much like my mother's, and, as you said, sound like symptoms of stenosis. Can I ask what your degree of scoliosis curvature is? Do you think your scoliosis is the result of degenerative disc changes or have you had scoliosis since you were an adolescent? I know that stenosis symptoms can really alter your life. My mother can no long stand, without leaning on something, for more than 5 minutes.

[JenniferG]

Hi Jennifer,

Thank you for the reassurance. Fortunately, I've been lucky enough to be otherwise healthy too - not even a cavity! The most invasive procedure I've had was when I got epidural cortisone injections to alleviate the back pain (ended up making it worse ). They had to give me "twilight" sedation for that, and it totally knocked me out.

Maybe I should take advantage of the anti-anxiety meds more often! Maybe deciding to go through with surgery might show me that I'm stronger than I think I am?

I saw your before and after photos - you look great! And glad to hear you're not in pain anymore. I feel like I'm getting old before my time (I'm 37) because I've been limiting my activities more and more to avoid the pain. Doesn't bode well for the future.

I have to admit though, your scar scares me. Was that photo taken shortly after your surgery? How does your scar look now? How painful was recovery?

Sorry Nancylynne, for taking so long to reply. (I thought I had? Must have had a senior moment.)

The scar photo was taken at 11 weeks. It's lighter now of course. My recovery wasn't overly painful from the day I came home from hospital. Being home, being in my comfy bed, I guess it was psychological as much as anything, but from that day, my pain eased off magically. I had withdrawals coming off the Oxycontin and had some dizziness to deal with, but not a lot of pain after the first three weeks. I thought I was 100% at 3 months, but of course, there were improvements after that, mainly with my flexibility. I can do anything now.