Daily pain, any relief out there?

[Jenni Lee]

Hi,

I have been experiencing increased back pain over the last 5 yrs or so, to the point of it being a daily, chronic pain for me.

My stats; Treated for juvenile scoliosis, underwent posterior spinal fusion/Wisconsin instrumentation in 1989 (at age 12). So I have Harrington/Lukey rods. Subsequently underwent thoracoplasty in Feb 1993 (age 16).

I am now 30. Up until 5 yrs ago, I was experiencing no pain save for the occasional muscle spasms across my upper back/shoulder blades.

Now -I get intense pain in a muscle on the lower left-hand side of my lower back (right in the arch), the gluteus muscles in my left buttock, and the side-calf muscles of my left leg.
Sitting for long periods definately make it worse. I have a lot of pain at my desk at work, and driving in the car. I try to compensate - I use an ergonomic kneeling chair, and do yoga on a daily basis (this I just started a month ago). I walk often.

I've seen 3 specialists in the last 5 yrs - none of which have helped me at all.

- First one basically said to me 'as an adult with scoliosis, you need to accept that you will live with pain for the rest of your life.

- Second one simply lectured on the importance of excersising daily (which I was already doing)

- The current specialist I am seeing has taken updated CT scans, and has advised me that he sees no collapsed vertebrae or nothing that could be pinching a nerve. It would seem that my pain is muscle pain, but nothing relieves it. He tried a cortisone shot into the muscle in my lower back (which I felt was the trigger point) and it helped that muscle for approximately 5 wks. The other painful areas remained the same. And now the cortisone seems to have worn off because I'm back to where I was before.

The doctor says he sees no explanation for my chronic pain. He says with my curvature, it would make more sense for me to have pain on the right side instead of left. And he has no suggestions or ideas on how to help me.

I have tried; chinese deep tissue (and very painful) massage. A.R.T. Treatmeants & Isometrics combined with chiropractic adjustments. Yoga, regular massage (though I can't afford to do that often).
I have obus form back supports for my car and my other chair at work.

Nothing seems to relieve the pain. I am becoming very depressed at the thought of spending the rest of my life feeling like this. I am so weary of the pain & sometimes I just can't help crying I'm so tired and worn out by it.

PLEASE if anyone has suggestions or can provide any insight as to what might be causing this pain, I could really use some new ideas. I'm reaching the end of my rope.
Thanks.

[LindaRacine]

Hi...

I don't know if it's possible, but Stephen Lewis MD (Toronto) has a lot of experience in treating patients with prior scoliosis fusions.

Regards,
Linda

[Lucy7]

Jenni, sorry to hear about the pain. The first post I made was about how tired I was with daily pain - it has put a real strain on my marriage as my husband says he read in the Washington Post that back pain in women is more to do with depression than any physical problem. aagggghhhh. Those kind of comments make me want to throw a brick at him!!

I have never had surgery but the scoliosis pain drives me crazy if I sit for more than an hour at a time or drive a car. I am now trying to find a job that limits my sitting around. I don't know if this will help you but the only relief I find is walking for about 40 minutes and then using an eliptical trainer (legs only) for about 10-15 minutes straight after. I have tried just walking or just doing the eliptical but I only get relief with a comibination of the two. I then stretch out my back on a swiss ball for about 2 minutes. I started doing that in December and I can now go up to 21/2 hours sitting down without much pain. I also don't know what I would do without my IBULEVE gel I get family to send it to me from the UK. It may be available in Canada. It is ibuprofen in a gel and works super fast. If you get any please read instructions and only put on a tiny amount.

I hope this helps mate,
Take care,
Lucy

[structural75]

Jenni,

This might be of interest for your pain.... Best wishes.

Dr. Mary Kay Brewster is an OB GYN, Medical Doctor in Carmel, California. She tried Structural Integration to alleviate low back pain and sciatica. She states, “I was in pain 90% of the time and now I am pain free. Everyday I recommend Structural Integration to friends, family, colleagues and patients.”

Dr. Irene Grant is an Internal Medicine and Infectious Disease Specialist in New York City. She is currently on the teaching faculty at Albert Einstein College of Medicine and Assistant Clinical Professor of Medicine at New York Medical College.
She had a very bad whiplash injury when she was a child, which created problems in her neck, similar to scoliosis. An Osteopath referred her to Structural Integration. Irene says, "After ten sessions I noticed that my posture improved, my chronic neck pain was significantly relieved, and I had much more energy. Further treatments brought progressive freedom. I experienced major changes. The most amazing thing is that I am now pain free."
Irene has been receiving Structural Integration sessions now weekly, for the past two and a half years. "I am very impressed with Structural Integration and have referred a lot of patients to Structural Integration, including Scoliosis patients. Structural Integration is a wonderful method that can rehabilitate and reverse injuries."

[macky]

I can certainly understand what you are going through Jenni. Our pain is in similar places. I get pain on the left side of my back and my scoliosis was on the right side( the curve) I have not had a thoracoplasty
I am pretty sure that, that pain is being caused now by the inflamation caused by screws, and I have read about other people on this forum who have the harrington rods have the same problem.
You are only 30, I am so sorry this is happening. I would follow Lindas advice and go and see a good scolosis doctor who has experience with this type of thing.

All the best, try and keep positive its hard though isnt it.
Macky

[miranda_m]

Hi Jenni,
the daily pain you are going through sounds awful and you shouldn't be going through/
As my scoliosis has got worse I have tried and tested lots of different things. I am 30 also and am waiting to have spinal surgery, the suggestions below have really helped me.
You said you have done some Yoga, which is good, but I find not specific enough. It doesn't get to the root of the discomfort. I also have spent several years doing Pilates, not the matt classes but with the equipment. This can really help you stretch, build and strenghten your muscles. Pilates works on your core pelivc floor to help support you. But my biggest relief came with Gyrotonics. This uses a v strange looking piece of equipment. All the exercises in this are rotational, so you really can stretch all the tight spots in your your body especially in your hips, back, shoulders. I can't stress how much this has helped me with pain.
I have also been to see a lady who uses alternative therapies. I have never done anything like this before so please don't think I am some person strongly into alternative medicine. The benefits have not only been amazing but I have learnt so much. She has used Rainbowdrop Technique, which uses essential oils that go straight to the spine and are massaged in to the body, Polarity which helps relise your energy paths and CranioSacral Therapy. This whole new body system was discovered by a man called John E. Upledger ( you should look him up) Basically the therapy works on your cerebrospinal fluid that surrounds your spinal cord and brain. The therapist uses a light touch to improve the functioning of the central nervous system, eliminate the negative effects of stress and pain and resistance to disease. his book is called 'Your Inner Physician and You' and its an eye opener.

I hope some of this may help you and that you try some of the suggestions.
let me know how you get on.
M

[Jenni Lee]

Hi...

I don't know if it's possible, but Stephen Lewis MD (Toronto) has a lot of experience in treating patients with prior scoliosis fusions.

Regards,
Linda

Thanks Linda, I'll look into getting a referral. Toronto is about 5 hrs away from where I am, so its do-able.

I saw in another thread you suggested buying a memory foam contour pillow to use in the car. Did you find this reduced your back pain in the car?
Can you clarify how you sat on this pillow? Do you sit ON it, or put it behind you? I might try this.

[Jenni Lee]

Jenni, sorry to hear about the pain. The first post I made was about how tired I was with daily pain - it has put a real strain on my marriage as my husband says he read in the Washington Post that back pain in women is more to do with depression than any physical problem. aagggghhhh. Those kind of comments make me want to throw a brick at him!!

I have never had surgery but the scoliosis pain drives me crazy if I sit for more than an hour at a time or drive a car. I am now trying to find a job that limits my sitting around. I don't know if this will help you but the only relief I find is walking for about 40 minutes and then using an eliptical trainer (legs only) for about 10-15 minutes straight after. I have tried just walking or just doing the eliptical but I only get relief with a comibination of the two. I then stretch out my back on a swiss ball for about 2 minutes. I started doing that in December and I can now go up to 21/2 hours sitting down without much pain. I also don't know what I would do without my IBULEVE gel I get family to send it to me from the UK. It may be available in Canada. It is ibuprofen in a gel and works super fast. If you get any please read instructions and only put on a tiny amount.

I hope this helps mate,
Take care,
Lucy

Thanks for the tips Lucy. I joined a gym for a year a couple of years ago. I was using the elliptical machine & found it increased the pain I get in my gluteus muscles. After consulting the personal trainer I was paying (who incidentally was also doing my ART & Isometrics treatments), she advised me to not use the elliptical anymore, but to try doing lunges instead. Starting with only 1-2 per leg, per day for a few weeks and slowly building up.

I'll definately look into that gel. I don't find Advil or any other anti-inflammatory ORAL treatments work though, you find the gel does?

[Jenni Lee]

hanging upside down....

I was reading through some of the other threads yesterday, searching for anything new I could try to relieve pain.

I saw one woman posted that during her pregnancy, she would lie on the couch with her feet over the back and hang upside down for pain relief.

I decided to give it a go last night (even though I'm not pregnant) and found it did indeed give me relief while in the position (though also made my head feel funny).

This raises the question for me - if hanging upside down gives me relief, that would indicate my pain is more likely due to a pinched nerve I think?
If it was merely muscle induced pain, that wouldn't help I don't think.

I'm confused, because my CT scans do not show any pinched nerves or collapsed vertebraes.

[LindaRacine]

Thanks Linda, I'll look into getting a referral. Toronto is about 5 hrs away from where I am, so its do-able.

I saw in another thread you suggested buying a memory foam contour pillow to use in the car. Did you find this reduced your back pain in the car?
Can you clarify how you sat on this pillow? Do you sit ON it, or put it behind you? I might try this.

Hi...

Strangely, I didn't have pain when I sat in the car. The pain I had came after a long drive, and the wedge did seem to help. I sat on the wedge, with the thick part of the wedge at the back of the seat.

--Linda

[structural75]

Jenni,

I saw one woman posted that during her pregnancy, she would lie on the couch with her feet over the back and hang upside down for pain relief.

This raises the question for me - if hanging upside down gives me relief, that would indicate my pain is more likely due to a pinched nerve I think?
If it was merely muscle induced pain, that wouldn't help I don't think.

I'm confused, because my CT scans do not show any pinched nerves or collapsed vertebraes.

During inverted positions you're reversing/minimizing the affects of gravity, which otherwise would be pushing downward on your whole body/spine. With scoliosis (lateral curvatures) the spine and soft tisues are more susceptable to these forces. It puts enormous strain on the tissue as it atttempts to resist the downward force and keep the spine from collapsing further into your curvature.

Pain is poorly understood in the medical community... without obvious signs of abnormalities, damage or compromise Doctors have a difficult time administering treatment. Basically they have a hard time treating something that can't see as being dysfunctional or problematic.

If your CT showed nothing remarkable and no sign of a pinched nerve, then I would bet the pain is coming from the soft tissue - excessive strain and at it's end point of adaptation and compensation.

On the other hand, CT scans and MRIs only give a static pitcure of what's happening in that moment and position. It is still possible that there is some nerve impingment that is being produced when you're upright and the weight of your body combined with the force of gravity is creating enough compression for this to happen. Positional variations may also 'pinch' the nerve as well, which wouldn't show on a scan necessarily, unless you're in that position. Nerves can also be 'compressed' or otherwise irritated in regions other than where they exit the spine, therefore a scan won't help determine that.

Hope that helps in some way.
structural

[Lucy7]

Thanks for the tips Lucy. I joined a gym for a year a couple of years ago. I was using the elliptical machine & found it increased the pain I get in my gluteus muscles. After consulting the personal trainer I was paying (who incidentally was also doing my ART & Isometrics treatments), she advised me to not use the elliptical anymore, but to try doing lunges instead. Starting with only 1-2 per leg, per day for a few weeks and slowly building up.

I'll definately look into that gel. I don't find Advil or any other anti-inflammatory ORAL treatments work though, you find the gel does?

Yes Jenni, the Ibuleve gel really works for me. I have tried all the Avil, Tylenols etc of this world. Nothing really works fast or enables me to get on with life. Right now i'm having a very bad day. My shoulder pain is making typing really difficult and my right hip is pinching like crazy. I am off now to use a little bit of gel on both areas and I should be feeling better in about 10 minutes......yeah, life is fun insn't it?! Just don't over use it as it really is the same as taking it orally.

All the best

[melissak]

Hi Jenni,
Sorry to hear about your pain, I can relate to it! I will be 30 this year and have been suffering for about 5 years, this last year has been the worst! My surgery was in 1992.

Over the last year I have had lots of physio and massage treatments. I saw so many specialists to try and work out why my muscles kept going into spasm and sending me sideways. The most spasm was in my glutes but also running along the lumber spine and down into my hamstrings and around to the front of my right hip.

My GP gave me low dose valium to relax the muscles, the musculoskeletal specialist recommended cortisone injections, which I didn't go for. Eventually a bone scan revealed a bone stress reaction (what happens before a bone fractures and rarely seen on an xray) around L4-L5 which is at the base of where my rods go to.

Unfortunately, I have a sitting job and the pain over the last year has been very disruptive to my work and I am looking at alternatives... I too don't want to live in pain for the rest of my life. In the meantime, I use a fitball as a chair which offers some relief.

Fortunately, one of the physiotherapists recommended pilates and I have kept this up for about 6 months. Working on the equipment once a week and going through my mat routine every night. The core strengthening and abdominal work has really helped and I would highly recommend it!

Having two weeks off work over Christmas was wonderful and I was relatively pain free. I can do all the exercise in the world during a working week and with the sitting I just end up undoing the good work!

I wish you all the best in finding some relief and sympathise with your present state of pain.

Melissa.

[GHD1959]

Ibuleve gel

Ibuleve gel.... Where do you purchase this? No one in town ever heard of it.

[debigolebiwski]

Jen...I hear your cry

And I am right there with you. I've been told that I'll have to "treat the pain and not the disease" by some quack in Memphis, TN. It's a daily fight and now, the stress of wearing this body jacket to top it all. I get really disgusted when I hear doctors say that scoliosis is a painless disease! It isn't. It's one pain that never goes away.