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Lois's Story

It all started in about August 1993 when I noticed my neck pulling to the right and my shoulder aching.  Went to the Doctor who diagnosed my shoulder as Rotator Cuff Syndrome and sent me to a Physio. Physio gave me exercise to do which helped but I still had the neck problem. The Doctor organised X-rays of my neck and I went to another Physio which didn’t help.

Finally got to see a Neurologist who didn’t find any problem and suggested massage.

Went to physio Sports Clinic, tried taping neck but that didn’t help.

Went to acupuncturist and hypnotherapy

New Doctor recommended an MRI of spine. This showed nothing and he recommended Feldonkriess, physio and hydrotherapy. Both of these helped a little but nothing fixed the neck.

By this time it was late 1994

Next was a chiropractor and naturopath. They suggested Calcium and Magnesium tablets along with manipulation. The chiropractor’s  manipulation helped after first visit but he was not able to repeat this at subsequent visits.

Next step was a brain scan which showed nothing.

By this stage the condition was becoming much worse and I went back to the neurologist (same neurologist that I had seen 9 months before) and he diagnosed  Spasmodic Torticollis. In all it took about 18 months to get a diagnoses.

I was then referred to a neurologist specialist in Melbourne who started me on Botox injections which help significantly but because the quantity was limited to 100 units it was not sufficient  to relieve the arching and stress on the neck.

The 100 unit limit was put on by the hospital due to the high cost of Botox which was not on the Pharmaceutical approved drug list at the time

Even with the Botox the impact on my life was quite significant with the condition being very tiring each day and I felt I could not travel on any significant trips. I battled on for about 2 years reading up all we could on S.P. and with a couple of others formed the S.P. support group.

In 1997 I became aware of an operation that was carried out in Canada called “Selective Peripheral Denervation” and I decided that the condition was serious enough to consider this step.

In May 1998 the operation was carried out and was a significant improvement

The basic information about Lois operation is as follows :-

  • Selective Peripheral Denervation carried out 29 May 1998on
    • Left sterno-cleido-mastoid muscle
    • Right posterior ramisectomy
  • Operation took between 4 to 5 hours
  • The right levator scapulae muscle which was known to be spasming before the operation was not done. At that stage more investigative work was needed to determine the best way to selectively denerve this muscle without effecting other movements such as the arm or shoulder
  • Period in hospital  -  6 days
  • Operation carried out at Jessie McPherson Private Hospital located at Monash Medical Centre
  • Cost  -  in 1998
    • Hospital including theatre for 6 days  -  $2384  ( this was covered 100% by private health cover)
    • Surgeon fees - $1170  - medicare refund $729.70, private health care refund $243.20. Giving a net out of pocket of $197.10
    • Assistant Surgeon $149.60  - medicare $145.95, private health fund $48.65
    • Anethesists etc. were extra cost that I couldn’t find

The above are the basic fact and you would need to contact Lois on other matters.

Today with Botox being on the Pharmaceutical list this is the preferred course of action
as long as sufficient can be injected. Surgery is considered only as a last resort.

The end result was that my condition improved significantly, the muscle that was not done is injected with about 200 units of Botox every 3 months, I take 0.5mlgrams of Rivitril each day and S T does not effect me to any significant degree but it is still there.


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