Back Pain-had surgery 30 years ago

[Trese]

I wasn't sure where to post this. Hope I get some replies here.

I had scoliosis surgery when I was 13 and they put in a harrington rod. I have not had many problems over the years. I had two children naturally and only had back pain with my daughter which I think had to do with how she was positioned inside of me.

Now I am 43 and since last Thursday, I wake up to incredible pain in my lower back area-near my butt bone but kind of to the left as well. I get up and go about my day and usually within half an hour, it goes away. Today however it is still hurting and I have been out of bed for 4 hours now!

Does anyone have any thoughts as to what could have brought on this sudden pain? I haven't injured myself or done anything different recently.

[MariHOU]

Trese

I posted on this site a while back with the same problem. I had surgery close to 30 years ago, fused and Harrington rods placed and then removed long ago. Had a pretty painless life until August of last year. Felt similar pain you feel, lower back toward butt and slightly to the left. Now, 5 months later it is moved a bit more to the left, toward my hip but still in the lower back.

Went to orthopedic doc for another problem and asked him why the sudden pain in lower left back and after an MRI he could not state a source for the pain for certain. He did say that it may be nerves being crushed in my upper and lower left corners of my fusion. He said nothing about me having bursitis or anything else.

Do you plan to go to your doctor to see what this new pain is?

[Trese]

Well, unfortuantely we just lost our insurance last month. Murphy's law, huh?? So, unless the pain is totally unbearable I will have to wait.

I have had such an uneventful life as far as my back all these years. No pains, no problems.

I came here to see if others have had similar issues. Maybe there is something I can take over the counter or some exercises I can do? I have about 50 extra pounds and I KNOW that is bad for my back. Maybe this is my wake up call to lose the extra weight. :(

[PNUTTRO]

Hi Trese.

I have a thought about your pain. Of course, I am not a doctor, but since you asked. . .

Since the pain came on suddenly, it is likely to be a muscle pain. From my experience, the degeneration that requires surgical intervention is a slow process and is a chronic problem. So that's good news.

Don't focus on losing weight first or making drastic changes quickly. Start with some stretching of your hamstrings and back. You can find examples of lower body stretches at: http://exercise.about.com/cs/flexibility/l/blstretch.htm

If you can find someone to give you a massage on occasion, that can also be part of your regular routine.

As I write this I realize that I haven't been doing so well with stretching lately. I guess I should take my own advice.

Take care and good luck.

p

[Trese]

Thanks for the advice, pnuttro! It is still bothering me. I have noticed that when I stretch a little it relieves the pain. I am also taking Aspirin Extra Strength for back pain. It seems to dull the ache. Time will tell if this is a chronic thing or temporary.

[jasper79]

Hi there,
I am just recently discovered this forum. But I have a somewhat similar past and recently a similar pain. I had scoliosis corrective surgery in 1979 at the age of 12, harrington rod in position. I am 40 now.
Anyway my problems have only started slowly in the last few years. But I did have a similar pain. After being exrayed and examined my ortho person decided it was all muscular and sent me to PT. I had an MRI to rule out a blood flow problem to the hip and to get a better view of the hip. the pain was in my lower back, closer to the butt and more to the left. It was very painful and it took quite a while for me to be convinced it was only muscular. I basically had a 'pain in the butt'. the PT used warm compresses, massage (getting a butt massage was embarrassing let alone painful) and some targetted stretches. With lots of stretching exercises for the ? periformis muscle I was doing much better but it took time to get past it. Now it is inflamed again this time extending past the butt through the outside of the thigh and ending above the knee. I was supposed to do the stretches three times a day, 3 sets each stretch holding for 15 to 20 seconds each. I was never that good to get around to them 3 times a day but they definitely helped.

[Trese]

Yes, I have certainly noticed that it helps to stretch my legs and lower back. It is still bothering me but MOSTLY at night and early morning. I can do most anything during the day. :confused: I mowed the grass today!!! But once I lie down for awhile, it flares up again. I am taking two 650 mg Arthritis pain pills before bed every night. I am probably only masking the pain. But this is what I will have to do until I have insurance again!! :(

[VivianLin]

My son's Orthopedic talked about 30 years problem when we first took the surgery. Basically, he meant if my son took the surgery (fusion from top to L4) after 30 years, some people will experience pain in lumbar area, which could mean that area needs to be fusee too. Probably you should see a doctor and ask about it.

[txmarinemom]

Yes, I have certainly noticed that it helps to stretch my legs and lower back. It is still bothering me but MOSTLY at night and early morning. I can do most anything during the day. :confused: I mowed the grass today!!! But once I lie down for awhile, it flares up again. I am taking two 650 mg Arthritis pain pills before bed every night. (

Trese, what is the main ingredient in your arthritis pills? You can possibly piggyback OTC (i.e., ibuprofen on top of acetaminophen - or vice versa) with them. I'm not a doctor - but it's worth checking out (and no .. I'm not advocating a "home test" without asking someone!).

Most definitely, tight hamstrings with pull on your lumbar area. If your fusion allows, work on stretching them ... nice and easy - but regularly ;-).

Regards.
Pam

[felix999]

Hi,

I was about to write a message today about the pain I am in then I saw your message and I have the same pain I think. I am fused and had my surgery 13 years ago about 4 years ago I started to get a pain in my lower back while lying down extending and into my hip but when I was up and moving around it was fine. Unfortunately lately it has gotten much worse and pains me now when sitting aswell. I have been to a surgeon last week and he done a few tests and said that my right hip and left hip dont move the same. The left hip is restricted and this is causing the pain. I cant remember what he called it but am going back next week after he has examined the xrays. Hopefully he can do something.

Has anyone else on the forum had this???

[Alma in Alaska]

Hi!Living up here sometimes I feel I am living in a undeveloped country.We have to fly to the lower 48(that is the way we explain it)to see a good doctor and if we have any problems before our next appointment to bad because the hospitals don't know what you are talking about and think you are nuts.Because this pain I am having is getting worse and I wish when I see the doctor in Seattle,Wa. on Jan.9th Icould ask him to put me in the hospital and do the surgery now.(vent,vent)Does anyone know if they can opperate on your complete back or if they have to do parts at a time. I have degeneration of the cervical spine,curved at the top of my Harrington rods,my original curve of 43* is 40*with the rods,and my lumbar is degenerated also. If someone can let me know how they have delt with there back after having Harrington rods put in many years ago. I just need to know where I am going. Please Pray for me I live up here and my friends +family live in lower 48, I feel as if no one here understands what Iam going through(even my Pastor is acting strange)I feel so isolated. Thank You for Listening. Alma in Alaska

[Karen Ocker]

Alma:
I was looking for a revision surgeon for my brother-in-law who lives in the Seattle area. There is only one and the wait is long plus he will not see anyone without a referral from the primary doc. Linda Racine, the moderator suggested surgeons in California have lots of experience with previously fused adults.
Here is a forum which is devoted to our type of problem:

http://health.groups.yahoo.com/group/FeistyScolioFlatbackers/

I personally feel going to Seattle may not get you the best results. Maybe things have changed since.

[Debra]

I had fusion and Harrington rods in 1967. Now 54, and with a 39 degree curvature, I am experiencing great pain. I have found a doc I like a lot and do pt every now and then. I do take some meds, for pain and inflammation. They seem to help but I cannot imagine going another 40 years like this! Was hoping to learn something new.

[Alma in Alaska]

Welcome Debra,I am kind of new also. I had Harrington Rods and Fusion in 1965 when I was 15yrs. What they are finding out is that the rods have held our spine so ridged the rest of our spine is degenerateing. When we had to have our surgery done the Harrington rods were all that was available at that time. So now we are having to fix the degeneration. Back then we were the leaders in the research which is helping so many young people now.If you keep comming back to this forum and read all the posts you can learn alot and begin to understand what is going on with our spine. The best way to learn what you need is to ask specific questions and some one will try to answer. Some times you may need to ask it a couple of times. I am still asking alot of questions.there are a few of us older people here watch their names and read the profiles and then if you feel confortable you can write a private message to them. This is just the besics but I hope it helps .Hope to talk again.Alma in Alaska

[rainbow2010]

I had the same problem, although I had insurance so I was able to go to the doctor. For relief, try a heating pad. I just got one that you put in the microwave and it hold the heat for a couple of hours. I exercise at a therapy pool. They keep the water at 90 degrees so it feels gooooood! I have been going for a year now and have lost about 5 pounds, however I have lost several inches. It has also dropped my cholestrol down to 153. It is the best way to exercise with putting strain on your back. Some days, all I do is walk in chest high water for 20 minutes for my exercise.

[Debra]

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]

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]

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!