Canadian patients

[Guest guest]

There seem to be many many patients in Canada who need revision and have

the old style H rods. Since there is such a significant number of

patients, most of them with old style H rods, they may flock to one of

the few docs who is qualified to perform revision in Canada. Hopefully

the word is getting out that there is help for Canadian sufferers.

Another point might be that scoliosis docs in Canada deemed revision

surgery to risky for the benefit, this is from my recollection on

readings. If I am wrong, please correct me.

I believe membership to the SRS is not an issue when it comes to

revision surgery. The thesis of the Scoliosis Research Society is to

treat scoliosis patients. There is no mission regarding previously

surgically treated patients (we have no name and no group to belong to).

Again, we really aren't scoliosis patients anymore. This is my

interpretation of the scoliosis research societies' response to my

inquiries regarding Flatback and other problems associated with fusions.

Again, there are other problems that warrant similar fusion and

instrumentation, namely spinal fracture. The docs who do these are not

scoliosis docs, and the surgeons who fix the possible failure of these

fusions non-scoliosis fusions are not scoliosis docs. There is evidence

that symptomatic Flatback occurs in some of these cases, and therefore

revision is needed.

Now, we do have very specific problems and the scoliosis curvature is

still a significant issue in the surgically treated spine. However, I

have never found that the scoliosis research society has no real

interest in addressing us once we have had our curves fixed, and I had

read from other sources that the Clinton administration deemed spinal

fusion a good enough 'cure' for scoliosis, and therefore scoliosis

research was cut. This is my recollection from other readings. So, we

are cured of our scoliosis with the surgery. From here, what is our

description? Are we no longer scoliosis patients? If we are scoliosis

patients, there is no organization that supports us as anything but a

side note. Do we combine ourselves with the other patients who have

Flatback from spinal fusions other than scoliosis? Well, they don't have

to deal with our longer fusions and they don't have a significant

scoliosis curvature. Some of these scoliosis curves increase, especially

with the gold standard distraction instrumentation pre 1985. The newer

segmented hardware has a better fusion rate and a better initial curve

correction rate, and better holds the curve from migration. Furthermore,

the old H rods pull outward in their forces, instead of pushing inwards

toward the fusion center. This is another factor in Flatback.

In my opinion, it is good news that other methods are being used by

other specialists. They tend to have a different philosophy that the

orthopedic community. Maybe someone will come up with a less invasive

revision procedure, and maybe this will come from outside the scoliosis

community since there is a need for flatback revision outside the

surgically treated scoliosis community.

What are the thoughts on these:

Are we still scoliosis patients once surgically treated? (of course we

are, but the treatment from the scoliosis community seems uninterested.)

Do docs outside the scoliosis community do a successful job in treating

surgically caused flatback?

Should we be categorized as spinal revision patients with other

surgically caused flatback patients, and would the subspecialties

treating the different causes of flatback be better off pooling their

knowledge rather than deeming this scoliosis revision?

Would a definite, medical description of our scoliosis revision

conditions be beneficial in describing our group, thus creating a

guideline for all surgeons in surgical correction?

My opinion is that giving us a specific medically termed name (not

Flatback as it is too confusing to others) would be the first step in

acknowledgment of the problems and would warrant research and treatment

of the in common issues.

Or, the current revision surgery, with its complexities and the great

successes and terrible and documented failures a good enough cure for

those of us who were cured of our scoliosis decades ago? As many of you

are aware, back in the 1970s we were told that we were cured and

required no other medical help and relatively no abstaining from any

activities, with no care or instructions on the management of our

rods/fusions.

Suzy Habibi