"Surgery:
Another Point of View"
By Nancy Baldwin Carter, Omaha Nebraska,
n.carter@cox.net
Reprinted from Post-Polio Health (formally called
Polio Network News) with permission of Post Polio Health International
(www.post-polio.org).
Any further reproduction must have permission from
copyright holder.
A few years ago an orthopaedic surgeon suggested rotator cuff surgery
for me. “You could raise your arms,” he said. He saw the inactivity in my shoulders and
wanted to help.
“But I have no serratus,” I replied, remembering how my first polio
doctor flattened his hand wide and moved it from my ribs around to and
underneath my shoulder blade area to demonstrate the location of this broad
muscle. Only when he pushed hard on my
scapula, no longer served by the serratus, could I even begin to raise my
arm. I understand why I need that
muscle.
The orthopaedic surgeon looked puzzled for a moment and finally said, “Oh. Then the surgery won’t help you raise
your arms”.
He had been thinking of his experience with rotator cuffs, not my
experience with muscles.
Herein lies a RED LIGHT when it comes to polio survivors and
certain types of surgery. Let’s
say I have a problem I can see is getting worse. I don’t want to lose function. I want desperately to be put back together
again, maybe even to become “the way I used to be”. I know that surgeons want equally as much to
help their patients, to bring a missing quality back in their lives. Here’s the important part: I cannot allow my thought process to stop
here, or I might find myself in deep trouble.
FUNCTION CANNOT ALWAYS BE RESTORED.
This is hard for some to swallow.
How can we be sure we are not allowing our desire to be made whole again
to lead us to believe an uninformed surgeon can make our dreams come true? When should we trust? What risks are involved? Sometimes we simply need to put our common
sense to work and make sure we’re dealing with reality.
A SURGERY STORY
A 40 year polio survivor in her fifties wore a full leg brace on her
left leg. Her right leg had a slight
recurvation (bowing back from the knee down) problem, but did not require a
brace. That leg worked well when she
walked, climbed stairs, got up from the floor.
The head of orthopaedic surgery in a teaching hospital examined her and
proposed surgery in the right leg. He said he could correct the bent leg
condition and also wanted to transplant a hamstring in that leg to the quad,
which he said would result in strengthening the quad to give more mobility. He
saw this as a bonus to the recurvatum surgery and said “I can make
that leg stronger and prevent recurvatum from happening again”.
RED LIGHT! “I
didn’t know if the recurvatum would be a problem later on as the doc said
it would be,” says the woman. “The
Doc said he could keep the condition from becoming worse, and I believed
him. He said he had studied with a Warm
Springs doctor, and this helped convince me that he knew what he proposed would
work.”
“He did not warn me of any consequences – everything was
positive. I simply trusted him”.
Results
After a much longer recovery time than anticipated, the transplant didn’t
work. Nobody had checked the quality of
the hamstring, which therefore lost strength in the quad. The woman can no longer bend that right knee
back, requiring a locked full leg brace for walking. She can’t do steps as she did before or
get up if she falls down. She can’t
drive a car without hand controls, and balance problems make it difficult to
get into a car on the passenger side.
RED LIGHT! “Today
I know a good physical therapist should have checked the muscle strength before
the surgery.” says the woman. “I wasn’t aware enough to realise this was
something I could have taken care of myself”. The recurvatum surgery left her with a
pin improperly placed below the
knee. Nerves to the right ankle were cut
accidentally so she can no longer move her right foot to the right or lift it
up, essentially giving her a drop-foot.
The necessity for using two full leg braces put a bigger burden on her
shoulders and arms, causing them to deteriorate more quickly.
Emotional implications
“This surgery essentially left me with a second
disability to cope with.” she says. “It prevented
me from doing activities that I had done nearly normally before. I am more angry now than I was at the time of
the surgery, because I realise the gravity of what actually happened to me. I never really thought about living with a
disability until after that surgery. It has to do with independence – the
fear of becoming dependent. When I had
one good leg, I had better balance and could carry things. Now I use a power chair because doctors have
determined I should not add to my shoulders’ task by using crutches.”
RED LIGHT! “The surgery presented much more of a
risk than I imagined. I’m disgusted with myself for not investigating
more thoroughly in the beginning. I
guess the idea of having a “normal“ leg again swept away my
reasoning powers.” the
woman concluded.
USING COMMON SENSE
Avoiding RED LIGHTS becomes an important step in any surgery
decision. Here are some tips to consider.
Rehabilitation
· Be sure surgery is necessary, that it’s the best
answer. Therapists with post-polio training,
among others, can frequently devise ways of dealing with situations that
preclude surgery. Pain, for example, can often be alleviated by physical
therapy, exercise learning not to overdo, or bracing. These methods can be much
less complicated, expensive, and chancy.
Even accepted alternative medicine approaches (such as acupuncture,
massage, yoga) may be encouraged by doctors allowing both disciplines to work
successfully together. Try the easy route first.
· Get rehab people lined up before the surgery. Have
them determine your muscle strength/capability.
Discuss the working of involved muscles with them and get their
professional judgment of how the proposed surgery will affect those
muscles. Share their findings with your
doctor as you plan for the surgery.
· Discuss future needs with rehab experts. Can you count on certain muscles to behave
the way you anticipate during recovery?
Will your arm be able to aid in transferring the way you expect, for
instance? Should you have additional equipment
on hand for moving around, for bathroom activities, for other daily tasks and
desires?
Doctors
· Find the right doctor.
Ask lots of questions. How may
surgeries has he done that are similar to the one proposed? Is he/she qualified to work with the vagaries
of polio muscles/bodies? Are you convinced this surgery involves doing
something that can be done? Does your
doctor see this surgery as a last resort?
Are you listening with an inquisitive mind, looking for down-to-earth
solutions?
Get
a second opinion from an expert not affiliated with your doctor. A little more caution can put minds at ease
when making important decisions.
Anaesthesia
· Talk to your anaesthesiologist well ahead of the
surgery about your specific post-polio anaesthesia issues
- what to watch for, what to
avoid, what to do. Consider for example
that polio survivors are often sensitive to sedative medications such as
certain muscle relaxants. Doctors should consider carefully the dosage of
whatever they’re using initially.
Care must be taken to prevent intraoperative overdose.
· Discuss post-operative pain with the
anaesthesiologists. Bring up that using local anaesthesia at the incision plus
PCA (patient controlled analgesia) may be one way to prevent pain. Or that succinylcholine should be avoided if
possible, because of the severe muscle pain it can cause.
· Realise it’s possible for anaesthetics to cause
such temporary problems as gastroesophageal reflux, tachyarrhythmia's, and even
maintaining blood pressure. Ventilatory
function should be discussed.
Anaesthesiologists should be made aware of upper airway and swallowing
difficulties. Special care must be taken so that affected limbs are not
fractured. Talk about these issues. Have your doctor arrange for you to have the
same anaesthesiologist you met with.
In addition…
· If possible choose a hospital that uses a team
approach. Doctors, therapists,
technicians, councillors, planning together, coordinating their efforts, are
more likely to make your experience smooth and successful.
· Do your research.
Use the internet and other reliable resources for sound suggestions and
explanations.
Unfortunately we have no definitive list of surgical
procedures that always work well for polio survivors – nor do we have one
for dreamers to avoid. But we can learn
to take precautions that leave us glad we spent the time to check things out.
I got lucky nineteen years ago when I needed truly
challenging spine surgery. Fate stepped
into my life and sent a brilliant doctor to watch over me. Everything clicked into place. I felt totally safe. I knew this was right for me.
It isn’t always this way. I’ve
been told that I was in denial (when I refused to confirm I was having
gallbladder pain when I was not), and that I was not cost effective (when the
dental surgery I needed took more time than the surgeon wanted to give). When I get these clues I move on, find
another doctor, search for better answers. Maybe I need surgery: maybe I don’t. I’ll locate a good doctor and look into it. Mainly what I need is to play it smart!