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View Full Version : Pain 14 yrs after surgery...



Jenni Lee
11-28-2003, 04:59 PM
Hi All,

I'm new here to this board and am quite relieved to find that something like this exists.
I'm 27 yrs old. My scoliosis was found at age 9, I was braced for 3 yrs, and had a Harrington rod implanted at 12 yrs old. At 16 yrs - I had a corrective surgery where they reduced the hump in my right ribcage. The reason for this surgery was not cosmetic, rather the older I got, the more my breathing was becoming restricted by my twisted ribcage. They broke and removed large pieces of 7 ribs so they would grow back flat.
The surgery was successful (despite the added complication of a collapsed lung).

Over the last 3 or 4 yrs, I have noticed a significant increase in back pain. I began occasionally getting very painful muscle spasms in my back, usually waking up in the night with them.
Lately, I've been having pain across my shoulders and in the middle of my back nearly all of the time. In fact, I have some kind of ache or pain happening about 85% of the time.

I began to get a bit concerned, and decided to see an orthopedic specialist to make sure everything was ok.
I saw her yesterday, and was quite disatisfied with my appt.
She basically told me that adults with significant scoliosis would have to live with chronic back pain the rest of their lives. She suggested doing situps daily, and yoga - as forms to lessen the pain. But said there was no way to prevent the pain altogether.
I was very depressed after hearing this.
I always accepted my scoliosis as something that was part of me, it just happened, I dealt with it, and moved on. Now, 10 yrs after my last surgery - I'm realizing that it in fact is a painful burden I will have to carry with me for the rest of my life?
It's an overwhelming thought. I'm not happy with this doctors diagnosis and I plan to get another opinion, perhaps from a doctor willing to suggest alternatives.

I am also going to try seeing a massage therapist next week, and i'm hoping that will help.

Anyone experiencing a lot of discomfort and pain, after years of surgery? Would appreciate any comments.

Thank you so much,
Jenni

LindaRacine
11-28-2003, 10:43 PM
Hi Jenni...

If you have significant pain, there's a reason, and it might be resolved by surgery. I'd encourage you to see another specialist. In what area do you live?

Regards,
Linda

Jenni Lee
11-29-2003, 08:36 PM
I live in Ottawa, Ontario - Canada.

The pain is not preventing me from going about my regular life... but its certainly not something I enjoy feeling so often.
I'm not sure if I am just focusing on it and therefore feeling it more... or whether there truly could be something wrong.
The specialist I saw this week looked at my x-rays (taken a couple of weeks ago) and said that everything looked as it should... but she is not a surgeon, and I'm not sure how much expertise she has in Scoliosis treatment.
She also did not take the time to compare my new x-rays with the ones I had taken 5 yrs ago to make sure nothing had changed. In fact she rushed me out of there quite quickly - I was not impressed.
I do intend to ask to be referred to another specialist - a surgeon preferably this time... but my family doctor explained that I could be on a waiting list for months just to get an appt.

I never really thought much about the hardware in my back or that something could go wrong, I kind of put the the whole thing behind me & assumed the surgery was successful then and would stay successful. I don't even know the stats of my curves or on which vertebrea I'm fused.. I'm thinking I should contact the childrens hospital where I had the surgery and ask for my files.

I'm not certain how to proceed here... any advice is helpful.
Thanks!

LindaRacine
11-29-2003, 11:27 PM
Hi Jenni...

Unfortunately, you may be out of luck. There are very few doctors who specialize in scoliosis in Canada. Of those who do, I haven't found any with any experience treating people with prior scoliosis fusions. If you can afford to see a surgeon in the U.S., there are quite a lot of good specialists in New York City.

Regards,
Linda

briarrose
12-06-2003, 08:45 PM
I can definitely relate to you. I've never had surgery and my curve is only 33 degrees (as of March 2003), but I'm in pain about 85% of the time.

I was diagnosed when I was 12 and when I was 16, the doctors told me I was done growing and my curve wasn't going to get any worse. At that point, it was 18 degrees. 4 years later, it jumped to 33 and I'm in a lot of pain. The doctor I have now I've seen twice. The first time was for my first x-ray in 4 years and that's when I found out it had moved. He sent me to physical therapy which only made the pain worse. Then, I went back to him in May of 2003 because of pain and he gave me a cortisone shot. This didn't help at all. My family doctor suggested I get a second opinion. This doctor said the exact same thing. "I'll do surgery around 45 degrees. Go to physical therapy and here's some pain killers (which didn't help).

This is all very depressing to have to just live with horrible pain all day. Sometimes I cry, not because of the pain, but because I'm not sure I can handle this for the rest of my life. I'd like to get surgery, but if you are having pain after the surgery, I'm not sure if it's worth it.

I hope you can find a better doctor and I hope your pain gets better.

Michelle

TwistedSister
12-31-2003, 12:31 PM
I can really relate. I had Harrington Rods when I was 12 and they were taken out when I was 22. Now I'm 30 and in pain and discomfort a lot (most) of the time. It depresses me too, because I think it is getting worse the older I get and sometimes I think I will be totally crippled in 20 years or something. Doctors in the US seem to think that just dealing with chronic back pain is OK. It kind of makes me mad. :mad:

LindaRacine
12-31-2003, 12:44 PM
TwistedSister...

There are relatively few doctors who treat patients with prior scoliosis fusions. You might be able to find a doctor who can help you. Where do you live?

--Linda

TwistedSister
12-31-2003, 01:10 PM
I live in the middle of Wyoming. There are only general practioners here in the small town I live in. There are only two large cities in the state, Casper and Cheyenne. The nearest metropolitan areas are Denver or Salt Lake City.

LindaRacine
12-31-2003, 07:33 PM
Hi TwistedSister...

I think the only scoliosis specialist in Wyoming is a pediatric specialist. You might want to check out Dr. Anthony Dwyer, who practices in Denver.

Regards,
Linda

AngelP
01-04-2004, 01:20 AM
Twisted Sister...
You may also want to check into seeing the Doctors in Golden, CO. They are located outside of Denver. Dr. Donaldson or Dr. Courtney Brown are a couple drs that have been highly recommended to me by several drs.

Angel

Jenni Lee
01-05-2004, 08:41 AM
Originally posted by TwistedSister
I can really relate. I had Harrington Rods when I was 12 and they were taken out when I was 22.

I was wondering why you had your rods removed? Were you having problems with them?

Do you have any sciatic nerve pain?

TwistedSister
01-06-2004, 03:13 PM
I was experiencing a lot of sharp, stabbing pain in my upper back so I went to a specialist in Denver. He took X-rays and told me the Harrington rods had "come loose" and needed to be removed. The removal of the hardware did eliminate the sharp pain I was experiencing at the time, but as I am getting older I have more dull, constant pain and discomfort.

Thank you both for the doctor referrals. I plan to call around and see if I can get in with one of them soon.