Back Pain-had surgery 30 years ago

[Debra]

update and reply

Thanks for your input. I stand in the hot shower and that helps. The heating pad helps too. I just bought a new one. My weight is fine----I trimmed down a couple of years ago and that has helped. I do walk and try to stay in flat shoes. I have good insurance and see a good doc. Dr. Harrington did my surgery and I have seen the folks who took over his practice.

[cammaltby]

Alama,

Hi...your story is an all to common one. It must be difficult living in Alaska and knowing you must travel for help, but I think no matter where you live in the US many of us end up travelling for surgery.

There is also a much more active group than the one Karen mentioned which I co-moderate. If you are interested you can read our member stories and get an idea of what folks have done to stave off what most of us found inevitible...more surgery.

Here is the group:
http://health.groups.yahoo.com/group/Flatback_Revised/

Perhaps we will see you there. Good luck.

Take Care, Cam

[Traintrackspine]

Trese,

The good news is that even if it's something really wrong, unless you're experience numbness or tingling in a limb, the worst that will probably happen is that you'll just be in pain. So if you do need to see an orthopaedic surgeon, he or she would probably tell you to wait and decide with any surgery options.

I had similar sounding pain to what you're having, however, and it turned out I had three crushed vertebrae, a broken rod, and flatback syndrome and needed to go back for revision surgery. I, however, had numbness down my entire left leg due to the vertebrae having no discs to lubricate the area between them.

Even with this really huge problem, my surgeon said the worst that can happen is, well, worse pain. There was also the added risk I would trip and fall and hurt myself or cause permanent nerve damage due to the numbness. He also did mention though that the longer someone endures pain, the longer the pain will stay even with surgery. So try to minimize your pain now and then see an ortho when you have insurance again.

One thing you might look in to is private insurance. I insured myself through BC/BS for $115 a month. They couldn't exclude the scoli as a preexisting because I hadn't been treated for it within the last 5 years. This way even if it's mild or major, you can see a physician and be covered.

What helped me while I decided whether or not I should have surgery (even though the surgeon said I really needed it I still waited 9 long months):

-Aleve gelcaps (with food)
-Stretching
-Hot packs on my back
-Walking

Good luck to you, and I truly do hope it is just run of the mill muscle pain.

[redbuckeye]

Pain 25 years after Harrington rod surgery

It is amazing to read the posts of so many of us in the same boat! I have always had a little pain since my harrington rod placement in 1982 but over the years, it has increased to the point where I can finally understand why people want to "check out of this world"! In August, I was finally diagnosed with severe arthritis in my spine and was told to quit my job. Frankly, I am only 45 years old and that just isn't an option. I had them fit me with an elastic type brace and they put me on Celebrex. It has helped immensly. I don't wear it all of the time but just when I am working or hurting pretty badly. Also, hanging on my inversion table helps stretch things out and relieves the pain too. ( I don't recommend hanging completely upside down but just far enough back where your head is lower than your feet.
I don't know if things are different today but I think the surgeons should have mentioned (back in 1982) that eventually, it is common to develope severe arthritis after having scoliosis corrective surgery. I was led to believe my back would be corrected and I would "live happily ever after". I look at the posts today of kids having corrective surgery when they are only in the 30-40 degree range and it is frightening. Are they being told what lies ahead of them 20 years from now?

[cwain]

Trese
I also had a harrington rod put in 30 years ago and then removed, no pain until last year when I was told I would need to extend my fusion. I have been going to yoga classes a couple of times a week and that seems to have helped a great deal. I recently heard of massage therapy for scoliosis and have been wondering if it would work.
Camille

[JulieBW]

42 years post Harrington Rod surgery

Hi all,
My perspective on this is that we don't know how many of us have problems. Those who visit here and the Yahoo sites do have problems, but who else is out there? I started visiting this site regularly last year, when I began experiencing burning pain, quadricep weakness and numbness in my left leg, in the distribution area of the femoral nerve. I have lost a lot of my walking ability (I used to do five miles daily in good weather, now I can only slowly walk 1/2 mile around the block. I'm fine in my house, and use an electric scooter to get around the school where I work.) I haven't "met" anyone with these specific symptoms. The people online mostly seem to have lots of lumbar (flatback) problems, and my fusion is mostly thoracic. There are a couple of SRS members in Rochester NY near me, so I will soon get the referral from my primary doc to see one of them. No one on this site has heard of them, or at least responded to my post about them. He sent me to a neurosurgeon last summer, but I later found out that the neuro is not an SRS member, so I want to see one of the orthos. I take Neurotin 400 mg TID, which seems to control the discomfort. I swim twice weekly, do stretches and back strengthening exercises 2-3 times per week. I'm getting by in my new life of lesser mobility. The less I think about this problem, the better I seem to do. My joking line is, "I used to think I needed to feel where my leg is in order to walk on it...."

[leklein]

Trese,

This is my first posting although I have been watching the forums for a few weeks. I have not had the surgery so am not sure if the info. will be pertinent, but your pain sounded so similar to mine that I thought I would pass on what I experienced.

I am 43 and have known about my scoliosis since a teenager when I wore the Boston brace for 3 years. I was borderline surgery candidate then at 35T and 38L. I have been largely pain-free over the course of my life even though my curves have grown to 52T/60L, most of the growth in the last 10 years or so. The pain I experienced in recent years that i associated with my scoliosis was an achy feeling in my rib-hump after standing a long time (which I do a lot with 4 kids, including a 3-1/2 year old). That goes away pretty quickly if I lie down for a short while and usually does not show up until later in the day. About 1-1/2 years ago, however, I started experiencing a sharper pain just above my butt area to the right of my spine. Like you, it was absolutely the worst when I first woke up and got out of bed and would get better once I was up and moving around. Over time, however, it was with me more throughout the day. It became very painful when I had a bad cough last winter.

I had seen several ortho. spine surgeons over this time period just to discuss my scoliosis in general and mentioned this pain to them---not excruciating pain, just really annoying. They basically said to take pain medicine. An MRI was done that did not show anything.

Anyways, at the time of the cough, I decided to go to the physical therapist for "core exercises", but what I really wanted to talk about was this new pain above the butt area. The PT immediately said he thought it was my sacroiliac joint. He did a few manipulations, for lack of a better word, to help my alignment (PT, not chiropractor) and gave me a few exercises which I am supposed to do at least 4 days a week. They don't take long--5 to 10 min.s. I immediatelly felt less pain after working with him the first day (30 min.s). I then saw him 2x/week over the course of a month or so, but I am not sure that much was even really necessary. It was and is so much better.

One way to identify this "spot" is to put your hands on your waist with thumbs pointing towards the front and fingers in back pointing down (almost like making a V but the fingers never touch at the bottom). The spot where your fingers end is around the sacroiliac joint. Evidently it is easier to "strain" over time when you have imbalances in the spine, muscles,etc. with something like scoliosis and also for women who have had children. (one of my friends who does not have scoliosis had this as well) It is my understanding that some people have an incident that triggers the initial pain, but many people aren't aware of anything that initiated the pain.

I am not completely pain free in that area now. I would say that it is still "sensitive", but it is so much better following the PT than it was before-hand. I had been doing yoga for scoliosis and pilates beforehand, but these did not help. Some of the agressive stretching was probably aggravating the situation.

Sorry for the length of this post, but just wanted to suggest that you might try PT. If it is strain to the SI joint, it may be responsive. I have no idea if this is what you have and what the impact of the surgery is on the situation, but wanted to pass on my experience to you.

Good luck!