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Advice re surgery & re Dr. Cooper

Posted by Sherry S on 11/03/03 at 16:24 (136285)

Hi all: I'm tentatively scheduled for surgery (still trying to decide) in Washington, DC, on November 20th. Has anyone had any experience -- positive or negative -- with Dr. Paul S. Cooper of Georgetown University? I'd seen 2 different podiatrists & been through a nearly 2-year treatment for plantar fasciatis (including having unsuccessful ESWT) before my internist referred me to Dr. Cooper. (My last podiatrist recommended surgery for a probable entrapped nerve (I'm not now remembering which one), so I went to my internist to consult.) Dr. Cooper is now recommending TT release surgery w/ a portion of the plantar fascia also being removed. I've had a nerve study that showed some, but not major, nerve problems. Anyone had any experience w/ Dr. Cooper? Thanks!

Re: Advice re surgery & re Dr. Cooper

BrianG on 11/03/03 at 22:08 (136307)

Hi Sherry,

I think you are very lucky to have found Dr. Paul S. Cooper, from Georgetown University. I'm not a big backer of surgery, but I really think that you have grabbed the Brass Ring, by hooking up with this doc. He is a true humanitarian, who also knows his stuff. I would visit him in a heart beat, and I am not usually pro-surgery.

Check out this article from the Washington Post, dated 2-20-01. The article does contain some dreaded politics, but I hope that everyone can let them be, as to delete them, would really take away from the story. Please, lets just stick to the medical aspects of this story, which I found on Google. Sorry, I couldn't link to it, so I'll have to cut and paste. It's long, but worth the read.

Good luck,
BrianG, Cut & pasted from the Net:

Cover Story
First Steps to Freedom
By Kate McKenna
Tuesday, February 20, 2001; Page HE10
It was March 1999 in Pristina, Kosovo's capital. Masked Serbian militia
marauded through the city, ordering all ethnic Albanians out of their
homes immediately. As frightened residents crowded into the streets, the
night sky glowed from the torching of distant houses. Shots rang out and
the entire Ademi family -- mother, father and four children aged 14 to
22 -- knew there was no time to lose.
But the Ademis' situation was unlike that of their fellow Kosovo
Albanians. Adding to their terror and vulnerability was the fact that
three of the four children were crippled by a mysterious condition that
impeded simple mobility -- much less a forced trek to the border at
gunpoint.
The oldest son, 22-year-old Artan, could no longer walk unassisted
on his twisted limbs; 14-year-old Valon would lose his balance and fall
every few steps. And Fllanza, 17, was bedridden, her ankles turned
sharply inward and frozen at unnatural angles. In valiant efforts to
stand, she had broken her feet and raised calluses on her ankles. She
was now reduced to crawling painfully on her hands and swollen knees.
Doctors in Kosovo had told the family that nothing could be done, that
Fllanza and her brothers must simply accept their fate, as this
unexplained malady slowly curled their limbs into bent and useless
things.
But now they had to move or die. 'You could see the fire in the sky,
and hear the machine-gun shots,' recalls the children's mother, Fehmije
Ademi. 'All you could hear was screaming and shouting and shooting.'
Her eyes darken and her face tightens as she remembers her
persecutors. 'The soldiers didn't care if you were sick, if you could
walk or not,' she says. 'They were barbarians. They would grab you, and
push you and kick you. And the ones who couldn't move fast enough, they
would shoot.
'For everyone, it was terrible! Horrible. But for us, what could we
do? Where could we go with these kids who could not walk?'
Artan struggled to his feet. But, his mother recalls, 'Fllanza was
on the floor, lying there, crying because she couldn't move. She kept
telling us that we must go, that she would stay there, because she had
no place to go. But her cousins were also crying that she couldn't stay
in the house because they would come and shoot her -- or worse.'
Her parents lifted her into their arms and ran, with Artan and Valon
straggling behind, while soldiers killed a neighbor's son -- to make an
example of him and create a panic that would get the crowd moving. The
Ademis, bearing their children and struggling along as they could,
joined the refugee flood.
What happened to ethnic Albanians that spring in Kosovo has been
described by former secretary of state Madeleine Albright as a 'horror
of biblical proportions.' But what happened to this family in the
following months was little less than a miracle. The tragic
circumstances of their upheaval notwithstanding, this episode of
'ethnic cleansing' led them, oddly enough, to salvation.
At a resettlement camp, the unexpected intervention of a high-level
American delegation gave them a chance at a new life and medical
attention. From the burning ruins of their life in Pristina, they came
to a place where their condition was seen not as the unalterable hand of
fate but as a recognizable disease that could be treated, if not cured
-- a disease with a name, albeit an odd one: Charcot-Marie-Tooth.
A Stealthy Disease
In the United States, as many as one in 2,000 people has a form of
Charcot-Marie-Tooth disease, or CMT, named after the three doctors who
first described it in 1886: Jean-Martin Charcot and Pierre Marie, who
worked together in Paris, and Howard Tooth of London.
The inherited disorder leads to slow deterioration of the nerves
that control muscle function, causing some muscles to weaken and
throwing the body out of balance. Symptoms generally start in the
extremities -- foot, lower leg, hand and forearm -- and are often first
noticed in adolescence.
CMT can also cause loss of sensation in the limbs, fingers and toes.
In its most severe form, CMT can lead to curvature of the spine, rigid
bone growth and abnormalities. In some patients, it can affect
respiratory functions. The spectrum of symptoms is broad, ranging from
mild discomfort to obvious deformity.
Overall, it is said to affect about 150,000 people in the United
States -- a figure small enough for the ailment to count as rare but
large enough to make it the country's most common inherited neurological
disease. In fact, it may affect more people: CMT advocates claim the
malady is one of the most under-diagnosed diseases. CMT symptoms can
masquerade as anything from arthritis to aging. In extreme cases, like
that of the Ademis, lack of treatment can lead to devastating results.
Basic texts describing the disease often note that there is no cure
or single prescribed treatment. For the Ademis, it took a long journey
-- ending in Alexandria -- before they found a doctor who offered a
treatment, a therapy and the hope that they could walk independently
once again.
Artan Ademi was just past puberty when the disease became evident,
bending his feet inward at freakish angles and impeding his ability to
move. Medical experts call this symptom 'marionette gait,' because it
leaves the legs and hips unstable and makes walking an arduous affair.
But at least he was still able to put weight on his feet.
Fllanza was less fortunate. At about age 13, her feet contorted
inward, then froze in that position. Her parents, who had watched the
disease cripple their oldest son, were inconsolable. 'We lived the
sadness twice,' recalls Fehmije, speaking through an interpreter.
Fllanza tried to keep walking -- on the outer edges of her twisted
ankles -- but for most of her teenage years, crawling on her hands and
feet was her only means of locomotion. The family could not afford a
wheelchair.
Then the Ademis' youngest boy, Valon, developed symptoms. His
deformities worsened until he was able to walk only on his toes.
Only the siblings' 21-year-old brother, Mentor, was left unaffected.
Kosovo doctors offered no consolation, appearing mystified by the
family's misfortune. 'They said it was God's will,' says the children's
father, Nazmi Ademi, in a voice filled with sadness. 'It's a disease,
and there's nothing we can do,' they told him.
And then came the militia, the forced evacuation and the terrible
flight to the border.
Family members say their first miracle was finding each other again,
unharmed, at a Macedonian refugee camp after weeks of separation and
deprivation. The terror of the forced flight was still fresh. Recalls
Fehmije, 'The soldiers were shooting in the air to make us move faster.
We were like lambs . . . they would throw us in one direction, then in
another.'
Lost in the turmoil and forced to hide in the hills for weeks, Artan
and Fllanza were the last to reach the relative safety of the Stenkovec
camp in Macedonia, just over the Yugoslav border. While their frightened
parents listened to daily radio reports of Serbian atrocities against
ethnic Albanians -- rapes and shootings and the discovery of mass graves
-- the two siblings were still making their harrowing odyssey. Fellow
refugees slowed their own pace to hoist Artan upright; others dragged
Fllanza along for miles in a blanket.
Once reunited, the family drew notice from relief workers. 'Their
condition was a big shock to everybody there,' said Indrit Bregasi, the
family's interpreter. 'It helped them get the attention they needed.'
President and Mrs. Clinton made a visit to their camp, teeming with an
estimated 20,000 displaced people. A senator traveling with the White
House entourage (his identity still unknown to the refugees) noted the
Ademi family's plight. Even amid this crush of human calamity, their
case stood out.
Lutheran Social Services of the National Capital Area got a call
from abroad, asking if the agency was willing to take on a family with
so many needs. 'Medical cases need a lot more time and attention than
the typical refugee/asylum case. And we had no idea what their condition
was,' recalls Ruth Anne Dawson, director of the agency's Falls Church
office. 'We only knew that they were in wheelchairs [that had been
provided by relief agencies]. We knew [the disease they shared] was
genetic. But we didn't know anything else about it.' Possible diagnoses
ranged from advanced arthritis to muscular dystrophy to polio.
'You never know what can be done medically. Maybe nothing could be
done,' says Dawson. 'Our initial plan anticipated having to look into
in-home care, even nursing homes. We had no idea if doctors could do
something.' Nonetheless, the agency took the chance.
In August 1999, the Ademi family was settled in a first-floor
apartment in Alexandria. Dawson assigned the case to Bregasi, a
soft-spoken but determined Albanian native and social worker from
Gaithersburg, who immediately set to work on the family's next miracle:
getting treatment.
In Search of a Miracle
Over the next six months, the Ademis went from doctor to doctor --
internists, neurologists and foot doctors. Says Bregasi, 'It was very
difficult just getting the appointments, just getting on a waiting list.
Because you'd have to call and explain the whole long story, and some
doctors just didn't want to take such a serious case.'
On top of that were the logistical challenges of getting to the
examinations. For each consultation, Bregasi would have to help Artan
and Valon walk and carry Fllanza from the apartment into a van,
wheelchair in tow.
But doctors repeatedly declined to take their case, dashing their
new hopes. Recalls Bregasi, 'I'd be telling the family: We will change
this. Doctors can help you. And we'd be refused by doctors who said
there was nothing they could do. They just didn't want to take the
responsibility of such a serious case. It was very bad. Those kids
suffered a lot.'
Richard Foa, then a neurologist at Georgetown University Hospital,
was the first to diagnose Charcot-Marie-Tooth that fall. Speaking from
Colorado, where he now lives, Foa recalls that the Ademis presented a
unique and extreme case. 'It's highly unusual to see three out of four
siblings heavily affected and one spared totally. And for it to be so
forcefully manifested in the children but not in the parents, that also
is unusual.' Also startling, 'particularly to Western eyes,' he says,
was to see a condition that had gone neglected so long. Foa suspected
that the Ademi family's status as ethnic Albanians had probably kept
them from reliable medical care, even in peacetime.
From a list of specialists provided by Foa, Bregasi came eventually
to Paul S. Cooper, director of the Foot and Ankle Center at Georgetown.
It was Cooper who literally put the Ademis back on their feet again.
Taking on their case pro bono, he made plans for immediate treatment,
including surgery.
Getting Limbs Into Line
Treating such extreme cases of the disease was a first for Cooper,
despite his years of experience working with CMT patients at Georgetown
and in Connecticut. He chose a series of surgeries, involving slicing
into bones and transplanting muscle from an unaffected part of the leg
to an impaired part. 'Nothing we did was uniquely revolutionary
separately -- but the combination of all these treatments performed on
one patient is fairly unique,' he said.
Cooper blocked out one day to operate on all three patients, one
after another, so the siblings could recover together and support one
another. Starting just after dawn on March 2, 2000, he and his
assistants started on Fllanza, the most complex case, followed by Artan
and, nearly eight hours later, Valon.
First, Cooper rebuilt Fllanza's foot by fusing three bones below the
ankle to provide greater strength and allow Fllanza maximum motion in
that joint. Called triple arthrodesis, the operation can also help
arthritis patients and people with flat feet or other major foot
deformities.
Next, he transfered tendons from the strong side of her foot to the
weak side, in a soft-tissue balance procedure often used for stroke and
polio patients. The goal was to correct the imbalance of foot muscle
strength that pulls the foot in unusual directions.
Those same two procedures would put Artan, the oldest son, on the
road to recovery. One similar, less radical, operation took care of
Valon's toe deformities and tendon problems. But Fllanza's condition was
so severe that it required another delicate procedure.
'Her foot was so contracted that if we had completely brought it
back into normal position, we could have stretched her nerves too far
and cut off circulation,' says Cooper. So as not to risk further damage
to nerves and arteries, he installed an Ilizarov frame, consisting of
high-tension wires cutting through the skin to the bone. The device is
generally used to save limbs of diabetics and patients with infections
who might otherwise face amputation.
Through a system of color-coded struts, the device allowed Fllanza's
feet to be moved slowly back into position, millimeter by millimeter.
Her mother tightened the settings daily to keep the strings taut, like
those of a well-tuned piano.
The day Fllanza took her first halting steps -- four months after
the operation and nearly five years since she'd last walked normally --
her mother cried all day. 'It was such a miracle,' she says now. 'I had
hopes, but never could have imagined how good it would be.'
A New Life
Today, Fllanza wears a constant smile. 'She was even happy to get into
the surgery room,' says Bregasi. 'Now she's so happy, she smiles all the
time!' Even the aftermath of surgery, the discomfort of the Ilizarov
frame, the wires through her skin and painful physical therapy didn't
take the grin off her face.
Once again, she's walking -- haltingly, but without cane or walker.
While doctors will always need to monitor her condition, particularly
her hips, knees and hands, for signs of muscle wasting or weakness from
the progressive disease, therapy has stabilized her feet. Now she says
she knows she will one day live on her own, hold a job, drive a car. A
once-bleak future suddenly holds all kinds of possibilities.
Artan and Valon, say their parents, are similarly excited, despite
Cooper's acknowledgement that their medical future is uncertain. 'We're
going the maximize their potential,' he says, and that is what they
cling to.
Today, a year after the operations, physical therapy still takes up
much of their time. They do floor exercises and weight presses three or
four times a day to regain strength in healthy muscle groups that were
underutilized as the disease took hold and to fortify muscles against
future stresses from the disease.
But outside the clinic, the three former patients are now free to
indulge in such simple but once unachievable pastimes as getting to know
their new neighborhood, going to the mall or the basketball court to
watch their friends play. They can also now visit with other Albanian
refugee families who live in their apartment complex near Landmark.
'A year ago, they were always in the house,' says Bregasi. 'Now
their life is completely different.'
Not that there are no more hardships facing the family. Back in
Pristina, their college-educated father, Nazmi Ademi, was a government
worker specializing in legal matters, until he -- along with thousands
of other ethnic Albanians -- lost his job in the poisonous political
climate of the early 1990s. His second son, Mentor, the only child
unaffected by the nerve condition, supported the family by selling
cigarettes on the street. In Virginia, both held jobs as field reps for
a Springfield auto-accessory firm, then were laid off. Now they are
doing maintenance and sanitation work at Reagan National Airport while
they seek something better.
But Bregasi says they are philosophical about such problems.
'Imagine if they were still in their country,' she says. 'Maybe Fllanza
would be crippled for the rest of her life. And her brothers, the same
thing. A lot of good happened that may never have been happened if they
had not been told to leave.'
There is much to hope for. Fllanza, at 19, hopes to be able, once
again, to dance the 'shotave' -- a traditional Albanian dance -- and
recover a portion of the youth she lost in Kosovo. Artan and Valon want
to learn to drive. They agree their journey has been miraculous in many
ways, but find it hard to describe, in any language, the dramatic
changes the last two years have brought to their lives.
'There are no words to describe what has happened, and what these
doctors have done for them,' says their father, shaking his head slowly
and looking at his now-vital daughter and sons. 'There are no words.'
Kate McKenna is a Washington area writer.
2001 The Washington Post Company

Re: Advice re surgery & re Dr. Cooper

Sherry on 11/04/03 at 09:23 (136331)

Brian: Thanks so much for your thoughts and for finding the Post article. It certainly confirms the confidence I've felt in Dr. Cooper. The big question, I guess, is whether to do the surgery at all. I am constantly aware of either the pain (sometimes) or discomfort and tingling (most of the time), but I CAN get around fairly normally. I wince and/or limp when I first put weight on it and after a relatively full day on it (and if EVER I go barefoot). But people who don't know me well wouldn't be able to tell there was anything wrong. The big thing for me is that I've had to stop playing tennis and taking vigorous exercise walks, both of which I love -- AND, perhaps most frustrating, it's difficult for me to run after soccer balls w/ my kids. I really don't want to give up on all that stuff and start acting 'old.' On the other hand, I'd be walking into surgery as a person who can do most of the everyday things -- I still run (well, occasionally I only walk or I limp) up & down the basement steps 10 times a day to do the laundry or get something from the spare fridge, for example -- and the recovery process sounds so protracted and difficult (and outcomes not all that certain). I'm nervous about making things worse (though Dr. Cooper says that happens in only 2% - 5% of cases, usually involving scar tissue) or doing something unnecessary. On the other other-hand, I don't want to delay surgery if delaying it poses it's own risks (permanent nerve damage??). Since you're not usually pro-surgery, do you have any other suggestions. About the only thing I haven't tried that non-doctors have suggested (but not Dr. Cooper) is Accupuncture. Any additional thoughts?? I found the nerve study SO unpleasant (as well as the prospect of my insurance not paying for it) that I admit I'm a bit reluctant to try Accupuncture -- unless, that is, I get a sense there's really some point in it (unintended pun).
Thanks for any thoughts you or anyone else has. My surgery date is fast approaching & I've got to make some quick decisions.
Thanks. Sherry

Re: Advice re surgery & re Dr. Cooper

Pam S. on 11/04/03 at 10:22 (136342)

Dear Sherry
I was just where you are several years ago. My pain was even worse than yours and I just wanted to FIX it right away. I did have the needle EMG and that was very unpleasant for me, however, it did confirm I indeed had TTS.

I am not sure how much your doctor (He sounds just amazing) has told you about the recovery process with this type of surgery, but it is a long and tedious process. I have to admit it took me almost a year for my foot to feel normal. I am probably an extreme case. I thought the pain after surgery was pretty bad to. I could not drive for quite some time and it was difficult with my kids.

I guess I am glad I had the surgery because I had relief for two or three years, but alot of my burning pain is coming back now. I do not really have the energy to figure out why right now. I suppose I am in the minority according to your doctor.

I do not want to be negative, but having this surgery is not a walk in the park. Also, have you had an MRI? If there is an obstruction in the tunnel, your chances of this surgery being successful are much greater. I learned that on these boards.

I have tried Acupunture and you are right, needles in the feet are just no fun at all no matter what they say. I could not tolerate it.

Have you had physical therapy?

Gotta dash, Keep reading past sites on these boards too. There is alot of wonderful info. It is just a gamble as to what to do. I am not sure about permanent nerve damage if you do not have the surgery? Anyone know? Gotta dash but good luck and keep us posted. Warmly, Pam

Re: Advice re surgery & re Dr. Cooper

BrianG on 11/04/03 at 17:51 (136381)

Hi Sherry,

I think Pam has given you some good ideas to think about. Why don't you take everything she had to say, and put it in question form, for the Doctor. Make a list, and bring it with you when you meet with the doc. This will insure you don't forget to ask him anything. If it was me, I'd want to know what he is going to give me for pain? Will it be strong enough? How long will he give it to you for? If you have bad pain for 4 months, wll he continue to treat you for it, with adaquate pain meds? If not, will he refere you to someone who will? Personally, I think it is much easier to heal, without the intense pain that comes with surgery.

Will you need a wheel chair? Do you have help with your kids if your off your feet for a couple months? Do you work? If you return to the same job, will it agravate your injury? What about infection? When I had my EPF (failed) I insisted the Pod give me a round of antibiotics, as I am not one to need them very often.

If you do have the surgery, make sure you take plenty of Vit. C, it'll help with the overall healing. Just remember, once you are cut, there is no going back. Make damn sure this is what you want to do. I think you found the right man to do the job, but do some more homework, to ensure he has done enough of these procedures to be good, very good, at it !!!!

Good luck
BrianG.

PS: Please keep us advised

Re: Advice re surgery & re Dr. Cooper

BrianG on 11/05/03 at 07:53 (136421)

Hi Sherry,

Me again, I found a link that I think will show you this man has the credentals to do your surgery. Not only is he a board certified surgeon, he is on the board of directors of AOFAS, Association of Orthopaedic Foot & Ankle Surgeons.

http://www.footdocs.org/boardstaff.html

Good luck
BrianG

PS: Don't forget your list, he is the only person that can really tell you what to expect.

Re: Advice re surgery & re Dr. Cooper

lauriel on 11/06/03 at 15:41 (136577)

Sherry, I did do accupuncture for my TTS. it did help for awhile, I think it is like people comfort people get with cortizone shots, it helps for awhile but doesnt cure it. He was honest and said it helped and didnt help. I am like you I had different symptons than most, mine wasnt all of the time pain time that most people have. I would get electric shots like someone sticking an leectric cattle prod in my ankle, it wouldnt happen all of the time, but did get proggessely worse. It also depended on the type of shoes, some tennis shoes like Nike, the shock would be a lot more. I did resort to surgery last December, and I am almost fully recovered, except now I am dealing with PF which I never had. I like you didnt want to say 'I cant do this anymore' It is really up to you on the surgery. Please do a search on my name Lauriel. I posted a lot on my recovery and what I went thru

good luck

Laurie