Advice Wanted Please Help

[NiciMac]

Hi, this is my first time on this site and it's reassuring to read that i'm not alone. Basically this is my story:
I had corrective surgery 9 years ago, inserting 2 rods and 14 bolts, i was 14 years old then. I didn't get any physio whatsoever after my surgery which i find totally bizarre, i 've been to see a chiropractor who says i need intensive treatment as the muscles in the left side of my back are completely dead. My GP disagrees with a chiropractor and says only a specialist surgeon should deal with my back.

Anyhow, about 3 weeks ago just sitting up out of bed i had a really sharp pain in the upper left of my back, close to a bolt. I thought it must be a trapped nerve/muscle or something and with a couple of days rest it seemed to ease. I couldn't move my head (especially down) and it hurt to move my left arm. Anyhow just leaning over to pick up my phone a couple of days later it went again.I was back to square 1. I was taken to hospital bla bla bla. My x-rays are fine, MRI and CT scan seems ok. Waiting on a bone density scan on the 14th.

I am in terrible pain surviving on Morphine patches and Diazapam because i am also getting muscle spasms.

Can anyone please give me some advice

Thanks

[Jacque's Mom]

Your GP is right, only a Scoliosis Specialist will be able to tell you. I would not continue with the chiro as, in my opinion and others, that will not help you. You really do need to find a Scoliosos doctor that specializes in revision surgery. If you continue going to others it will only be a waste of time and money. I feel for you, it's not easy and really can get a person down. Please see a specialist and go from there. Good Luck! LYNN

[Writer]

Nici, I'm very sorry to hear of your trauma. Unfortunately your GP, and many scoliosis surgeons, have not heard about physical therapy techniques specifically for scoliosis. Your intuition is correct: spinal fusion surgery does not obviate the need for physical therapy to correct patients' posture and maintain stability above and below the fused segment.

There is a classic article in German about PT for scoliosis post-ops, recently translated into English. See: Lehnert-Schroth, Christa. "Physiotherapy for scoliosis patients following spinal fusion surgery." Krankengymnastik 48 (1996): 212-219. "Krankengymnastik" means physical therapy in German; this is one of the major PT journals in Germany.

You can find the translation in downloadable PDF form at the website of Christa Lehnert-Schroth:
http://www.schroth-skoliosebehandlung.de/

Go to the English section (UK/US flags) and click on the page "What can patients do?"

The article is intended primarily for physical therapists, and you should not use the exercises depicted and described to treat yourself. But it will explain the principles and show you some viable options. If you chose the wrong exercises, or did them wrong, you might exacerbate the problem. Everybody's scoliosis configuration is somewhat different, particularly after fusion.

You'll likely need to be treated by a physical therapist, ideally one trained in the Schroth method. (There's a list on the front page of the scoliosis.org website.) I am skeptical whether chiropractors could help much. But what you really don't want is one revision surgery after another because the underlying problems don't get solved, like some of the heartbreaking repeat-surgery cases you can read about on this forum.

Good luck.

[Karen Ocker]

But what you really don't want is one revision surgery after another because the underlying problems don't get solved, like some of the heartbreaking repeat-surgery cases you can read about on this forum.

Good luck.

Writer:

If there is a problem with hardware or a weakening fusion NO PT will help that. This has been our experience. Revision surgery addresses specific, structural problems with specific modalities. Many of us have tried all sorts of exercises, PT etc. with absolutely no permanent impact on the problems I just mentioned.
I have extensively read about the Schroth method. The best results are with adolescents with smaller curves and they use intensive in patient PT in Germany with bracing. Statistically, their patients need less surgical intervention when employed on young adolescents with smaller curves. Even then, some must still have the surgery.

Yes, post-op strengthening of the non fused areas are a must for better posture and function.

Also the boy pictured on one page is 5 years old post-polio scoliosis. It looks remarkable but did it stay corrected or must he do exercised the rest of his life??

This book was written over 30 years ago around the time Harrington rods were being used. The issue of revision surgery did not come up.

Don't get me wrong. I believe Schroth is a great modality for appropriate patients. But preventing revision surgery?--- Not sure that is addressed there.

[Writer]

If there is a problem with hardware or a weakening fusion NO PT will help that.

True. But NiciMac didn't mention these. I was speaking to her sense that there ought routinely to be PT prescribed following surgery. Surgery fuses spinal segments and fixes the spine with implanted instrumentation, but it does not address the underlying muscular strength imbalances or related soft tissue asymmetries that contribute to most scolioses in the first place, and will likely continue to place abnormal loads on unfused segments following fusion. Properly designed PT ought to help ensure that the surgery remains successful and does not have to be revised, that's what I meant. The PDF article I referred to above explains this more authoritatively than I can.

Also the boy pictured on one page is 5 years old post-polio scoliosis. It looks remarkable but did it stay corrected or must he do exercised the rest of his life??

I don't know his story. But normally the Schroth patient does a half hour of exercise daily, lifelong, following the in-patient program.

The issue of revision surgery did not come up.

In her book, Lehnert-Schroth talks about one case where a cable broke -- that was one instrumentation technology in the 70s -- and obviously that had to be followed up surgically.

[felix999]

I am thinking of going to her clinic in England for 4 weeks intensive course to help me with my spine. I have been fused but my spine is still progressing a little bit and hopethat this treatment might stabilise it and give me back the few degrees I have lost. I am also getting opinions from a surgery and he has said that surgery is not advisable at this stage and would perfer to see what happens and he thinks it will be ok ( have posted here before about it ).
I know though they will not give this treatment to peeple who still have the instrumentation.
Amanda

[NiciMac]

scroth physical therapy

Hi everyone,
Thank you all for your response and advice in dealing with my situation. I was delighted to hear about the Scroth Physical Therapy method, as i personally think the lack of physical therpay after my operation may be the cause of this severe pain which has now taken over my life. Also, as there is no obvious sign of a problem with the metal work as yet (Bone density scan to be carried out 14/01/2007) scroth therapy seems like a great option. However, i live in Ireland. I have been doing my research and the only english speaking clinic that practices this method in europe is in england called scoliosis sos. I contacted them and they have said they don't often deal with patients with rods still in place. But would not be able to treat me as my metal work also has 3 hooks in place. He has told me this is severly dangerous.

I thought i had found my solution but i am now so confussed,disheartened and sore!

Again, thank you for all your support if you have any further advice please help

[Writer]

Nici,

In your specialized case I would write to Christa Lehnert-Schroth herself. She has more experience in matters like this (relating to the PT aspect) than anybody. It would help if you can volunteer to take (or have taken) digital pictures of yourself to show posture, and for the instrumentation a recent X-ray may be desirable, I should think. Ask her about photo and X-ray specifications for diagnosis.

It would be advisable, though, to learn what you can about the Schroth system so you'll understand the basics before you begin the conversation. Read at least the article about post-op therapy that I refer to on her website.

http://www.schroth-skoliosebehandlung.de/

You can email her via the Contact link. She does read and write English, though not perfectly.

The clinic in Bad Sobernheim, Germany, which she directed before she retired, could probably help you, as their staff has been practicing this method much longer than the English clinic and they would have had many post-op patients. www.skoliose.com

The other major European Schroth clinic is in Barcelona, where they more often take English-speaking patients than the German clinic does, I think. There's a reference to it on the Lehnert-Schroth site (the Courses page).

Of course it's possible that something has gone wrong with your instrumentation or the fusion, in which case Karen is right, you'd need to consult a surgeon. I'm assuming the more positive case, that specialized physical therapy may solve your problem. In my case (not post-op), most of my pain was caused by tight hamstrings, a very simple thing for the physical therapist to diagnose and correct, but which a surgeon would probably not catch.

Good luck
--Writer