When it hit three years ago, the only frame of reference
Jo Ann Morello had for the extreme pain spanning from the very top of her legs
right down to her toes was a severe case of the flu. To describe the sensations
that plagued her extremities, she uses words like
burning
,
stabbing
,
aching
and
walking on nails
. Sometimes, she says, those sensations appeared
one at a time; other times, she felt them all at once.
“It came on like the snap of a finger and it never
stopped,” she reveals. “This thing just knocked me for a loop.”
Jo Ann soon learned that she had a disease, a genetic
disorder lying dormant since her birth, known as Charcot Marie Tooth (CMT). The
most commonly inherited neurological disorder, CMT affects approximately 2.6
million people and appears throughout the world among all races and ethnic
groups.
Causing a slow, progressive deterioration of the
peripheral nerves, symptoms of the disease include extreme pain due to nerve
damage, as well as weakness in the extremities caused by loss of nerve
stimulation.
Though CMT is not life-threatening, and it does not
generally affect brain function, its physical effects can be devastating and
disabling. For Jo Ann, a business owner and mother of four grown children who
classifies herself as someone who “wakes up, puts her feet on the floor, and
just goes,” the disability was devastating indeed.
And the worst part, she shares, was what happened at
night. “The nights are affected more than the day because, as it was explained
to me, when your body is at rest, your brain has nothing else to focus on but
the pain,” she shares. “As the night progresses, the pain just gets worse because
you’re not moving your legs.” Without fail, Jo Ann says, she would be up and
down until all hours, walking to try and ease the pain.
Seeking pain relief
In search of some sort of help, Jo Ann began by seeing a
few neurologists in the area of her Flagler Beach home. After trying several
medications with no success, she knew it was time for something else. “Finally,
I went up to Shands in Gainesville because I figured it’s a teaching hospital.”
While at Shands Hospital at the University of Florida, Jo
Ann found a doctor knowledgeable in the area of Charcot Marie Tooth disease, a
professor who also teaches on the subject. For three years, she says, he worked
to ease her pain, prescribing numerous medications that, ultimately, gave her
unpleasant side effects and little else. And though the medicines didn’t work,
that doctor did make a very crucial suggestion.
“He mentioned that I should consider seeing a pain
management specialist,” she recalls. “I had never even thought of that, to be
honest.”
Pain management techniques
Fortunately for Jo Ann, upon following her neurologist’s
advice, she ended up in exactly the right place: Advanced Pain Management,
under the care of Dr. Bhalani.
Kirit Bhalani, MD, a diplomate of the American Academy of
Pain Management and former director of pain management with Florida Memorial
Hospital Systems and Columbia Hospital, has been in practice in his specialty
for over 15 years.
“Our approach is to work with integrated multiple
subspecialties, including a local neurologist, a rehabilitation physiatrist, a
physical therapist, a psychologist, our neurosurgical team and, occasionally,
an acupuncturist, in order to find the right method of treatment for each
patient.
“When Jo Ann came to see us, she was on heavy doses of
medication, with almost no relief at all,” Dr. Bhalani recalls. “The worst part
was how much excruciating pain she was experiencing during the night.”
For several months, the doctor explains, he worked to find
the perfect combination of medications to relieve her pain, but everything
failed.
“I was at the pharmacist three or four times a week,” Jo
Ann recalls. “Dr. Bhalani even tried borrowing medications from other diseases
because the side effects can be helpful for other conditions. Unfortunately,
all I got from all of these medicines was the bad side effects.”
One of those side effects, depression, took an especially
dramatic toll on Jo Ann. “There were times I used to say,
I wonder what it feels like to be depressed
. Believe me, in trying
different medications, I found out what it feels like,” she shares.
“Trying to fight this awful pain and then, on top of it,
all at once you just feel like you have this cloud over you, this anxiety and
nervousness and depression. And then it takes twenty-four to forty-eight hours
for the side effects to get out of your system when you make a change. In these
three years, I have really been through the mill with things.”
When nothing worked, Dr. Bhalani says he and his partner,
Amit Sharma, MD, put their heads together to come up with a new approach.
“Higher doses led to more side effects, and because of the type of pain she had
from head to toe, she was not a candidate for a stimulator. We decided to try a
combination of local anesthetic and pain medication, administered by a pain pump,”
Dr. Bhalani says.
Jo Ann says, after doing her own Internet research, she
knew all about the pain pump. “I told Dr. Bhalani and Dr. Sharma I wanted to
try it,” she shares, “and they said okay.”
The process begins with a test dose using the pain pump system,
Dr. Bhalani informs, during which the medication is administered into the
spine, but the mechanism remains outside the body. “We did a continuous
catheter and tried it out for a week. That was the first time she had been able
to sleep through the night in years.”
“When they did the trial,” Jo Ann remembers, “I was like,
Oh, my gosh
. I had forgotten what it was
to be out of pain.”
Following the successful trial, Jo Ann decided immediately
that she had to go ahead with permanent placement of the pump. “I said,
We have to do this because I have relief
.
I just couldn’t believe how much the pain had subsided.”
Since Jo Ann’s surgery, Dr. Bhalani reports, she is off
nearly every pain pill she was taking, and they’ve been able to manage
approximately 90 percent of her pain with the pump medication. It’s so
satisfying, he adds, to see the improvement they’ve been able to make in her
life. “Her husband told me that, in the middle of every night, he would get up
with her and rub her arms and her feet until either he or she fell asleep. This
was their routine for years.
“But the first week we put the pump in,” the doctor
shares, “she said,
I’ve got my life back
.
And immediately her husband said,
I’ve
got my wife back
.”
So happy to
be
back, Jo Ann is thrilled with both her results and her treatment. “Having
doctors who are interested in making sure I get the most out of the pain pump –
that's what counts. I know Dr. Bhalani and Dr. Sharma sympathize with what I
had to go through, and that they will look into everything to help me,” she
stresses.
“I never feel like I’m rushed in and rushed out,” she
says. “I can’t say enough about them, and I couldn’t ask for more. I would say
my life, compared to the way it was, is one hundred times better. I just love
both of those doctors.”
Powerful Pain Relief
When traditional methods fail, pain pumps are an effective
alternative, offering a reduction in oral medication and consistent control of
chronic pain symptoms. Known as intrathecal drug delivery, the pain pump is
surgically placed under the skin of the abdomen and delivers medication
directly to the spinal cord, an effect similar to that of the epidural many
women are given during childbirth.
A more direct delivery system, the pump’s efficiency is
due to the fact that medicine is released right into the cerebrospinal fluid,
requiring about 1/300
th
the amount needed when taken orally.
Approximately the size of a hockey puck, the device
reaches the spine through a small plastic tube, called a catheter, while a
reservoir inside the pump holds the medication. Medicine is delivered at
intervals precisely calibrated for each patient and, with a memory for
prescription information, the pump can be reprogrammed to reflect changing
needs. Patients may not need to see the doctor since prescriptions do not need
to be refilled between 30 to 120 days. This brings less frequent visits to the
doctor.
Candidates for the pain pump include patients for whom
conservative therapies have failed, for whom additional surgery would not be of
help, who are dependent on pain medication, are free of psychological problems,
have no contraindicated medical problems, are not allergic to the drugs used in
the pump, and had a positive response to the trial dose.
In addition to chronic pain, some specific conditions that
could benefit from the device are failed back surgery syndrome, cancer pain,
chronic pancreatitis, cerebral palsy, multiple sclerosis, stroke, brain injury,
and spinal cord injury.
Following the procedure, which typically takes three to
four hours, patients are usually discharged the same day and can gradually
return to normal activity. Walking is absolutely encouraged, beginning with short
distances and then slowly increasing to one to two miles per day.
Risks of the procedure, though minimal, do exist.
Complications may include infection and bleeding, movement or blockage of the
catheter, and accumulation of fluid around the pump. Drug side effects may
include dizziness, anxiety, depression, edema, respiratory depression,
twitching, muscle spasm, urinary retention, constipation and nausea.
To determine if an implantable pain pump is right for
them, patients should consult a pain management professional for assessment.
Patients must undergo a trial or screening process to establish the potential
success of the procedure, as well as to learn the best location for the
catheter and type and amount of drug that will be most effective.
FHCN - Brenda Klettke