Sunday, June 20, 2010

It's About the Back ...

I started writing this post several times and each time I got cold feet and didn’t post it. I guess because it is such a personal subject it’s hard to talk about how it has dominated my life for quite a number of years. Oh, I know I have occasionally made comments about my crummy back, but never really explained what that was all about. Last week I flew to St. Louis to meet with a surgeon who is a specialist in what is called “revision surgery.” So it’s time to explain.

Warning: I'm leaving out the gory details and technical language, but if you are sensitive about medical issues you may not want to continue.


I have idiopathic scoliosis.

This isn’t my back, but mine looked exactly like that before my surgeries. I didn’t even know that my spine was deformed like this until I was in my 20s when a doctor noticed it during an examination. The prevailing belief at the time was that at my age there was nothing that could be done since I was past my growth spurt, and that it wouldn’t get any worse than it already was. (Yeah, right!) I was told to forget about it, and I did. In retrospect, I was fortunate in that my S-curve was well balanced and I didn’t have front-to-back rotation. So it wasn’t very noticeable and I wasn’t self-conscious. (Yes, I had trouble sometimes with some clothing alterations, but it was relatively easy to compensate for one hip being slightly higher than the other.)

The trouble started in my later years, when I started to hurt “from my neck to my knees” with some internal problems as well. After years of tests, physical therapy, massage, chiropractic, acupuncture and anything else I could think of with no relief, I finally had major spinal fusion surgery in 2000, with rods and screws and hooks placed along my entire spine. This is how it looked after that surgery.

Unfortunately, that didn’t end my back problems. In 2005 I developed spinal stenosis, a narrowing of the space around the spinal cord that puts pressure on the spinal cord and the spinal nerve roots. People, I have to tell you … that was the worst pain of all!  I had no choice but to have another surgery, which extended the fusion a little further into my lumbar area.

I never really recovered after that surgery – I was unable to keep myself upright, and walking and standing for any length of time became extremely difficult. The surgeon insisted there was nothing wrong, so I sought out opinions from two other surgeons. Both of them told me that my fusion did not heal solid, a condition called pseudoarthrosis. I subsequently had a third surgery (2007) with a different surgeon, an additional fusion down to the sacrum, and a fourth anterior (“front”) surgery (2008) to place a metal plate in front of my vertebrae.

In my defense, these were all well-respected surgeons and I had done my homework beforehand. Revision surgeries are relatively common, especially for people who had their surgeries more than 20 years ago because of the fusion techniques used. I won't bore you with the historical data, but the technology is a lot better now but still carries risk and complications, and I'm living proof of that.

Here's what it looks like now, after I have been sliced and diced three more times.

It was after the second surgery that I finally took early retirement. I just couldn’t handle the travel and physical demands of my job anymore. Each of these surgeries has a very long recuperation time, anywhere from 8 weeks to 3 months without driving, bending, lifting, or twisting, 6 months before I could start any physical therapy, and a full year before I could be considered to be fully recovered.

After all that, you would think I should have a perfectly straight back with no problems. No such luck! I have a condition called iatrogenic flat-back syndrome, which simply put, means that the surgeries I had didn’t allow enough for the normal curvature ("lordosis") in the lower back, so I am constantly bent forward. And that causes all kinds of other problems with hips, legs, upper back and neck, and an extremely poor prognosis. I’m not in horrible pain, just a constant ache and soreness in my entire back which requires me to get off my feet every so often, and to plan my activities to minimize extensive walking without a break.  The ideal posture for anyone is for your cervical (neck) area to be balanced directly above your lumbar area.

Here's a side view xray of how I used to be, and how I look now.

That’s why I went to see the surgeon in St. Louis who is one of only a handful of surgeons in the country willing to take on complicated revision surgery for a condition like mine. As you can imagine, there’s a long wait list, so I’m scheduled for surgery next March.

What I have orders to do between now and then is a specific aerobic, stretching, and weight training program. (They didn’t say it, but I will – I also need to take off 20 or 30 pounds!) I have been exercising all along but I have to re-double my efforts now, with no slacking off.  Many standard exercises are forbidden to me because they are too stressful on the lumbar area or because I simply have very little flexibility. And aerobics in particular is difficult because of my bent-over condition.  But somehow I have to get as healthy as I can for what will be an extremely complicated surgery. 

What I would also like to do is figure out how to get some real buyers into my Etsy shop. Either that or figure out some other way to make money. I know not what.  LOL! My insurance will cover the surgery, but I need to save up some money for all the extra expenses - traveling back and forth, and lodging, meals, etc., with a family member for at least two weeks for the surgery.

There … I’ve said it. It still feels a little strange to talk about this, but this is what's on my mind these days. So if you have any kind of back pain, or you are living with a chronic health problem .... I understand.

9 comments:

  1. Good gracious you have been through the mill, so to speak.
    I have a mild scoliosis and understand what you are talking about,however i never had surgery and just a few back problems.
    I hope they can sort it all out finally for you and hope you get some more sales in etsy. Have you thought of selling items from your blog ? its just a thought.
    hugs June xx

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  2. well first of all, i came here to thank your for your visit to my blog!
    but you are going through so much...and the stress of dealing with chronic pain must indeed be a heavy burden to bare....

    take it one day at a time, that's about all we can do sometimes!

    ciao bella
    creative carmelina

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  3. Thanks, June. I have thought about it. I just keep running out of time to do everything. Don't know how others do it. Love your blogs!

    Carmelina, I love your blog too. You make such pretty things. I just wanted to let you know that I'm paying attention even if I don't comment that often.

    Thanks for your good thoughts, ladies.

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  4. I hope you are able to make it all happen, Felicia. Constant nagging pain has such an impact on every aspect of your life.

    Your work is beautiful

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  5. Wow you are an AMAZING woman of strength!! Thank you so much for sharing your healing progress with your back. You have such joy with life and have overcame so much.

    Continued prayers and healing thoughts heading your way!
    ♥schar

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  6. Felicia, you are an inspiration and I hope it helped to share your story and feelings. Now you know that someone is listening!

    I will pass along positive thoughts and healing energy during your workout time.

    Hugs, Lynne

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  7. Thank you all for your understanding and for your good thoughts and prayers. I really appreciate it, friends!

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  8. Felicia, I've been through pretty much the same surgeries and experiences that you have. The only difference is mine was originally caused by lumbar surgery. Ended up with scoliosis (leaning to the right) and then flatblack for over 4 yrs. I just had revision surgery Sept 30th with a very experienced deformity surgeon. I'm already so much better that it's amazing. I pray your surgery goes as well as mine. BTW, I'm 65 yrs old and almost didn't do it. I'm so glad I did. Blessings to you!

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  9. Breeze5301, so happy you're doing well. This is an older post and I did indeed have my revision surgery a few years ago. I am doing great too - no pain and standing up straight!

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