r e q u e n t l y

   Asked Questions\

This section is from our support staff. It is an attempt to deal with those problems or inquiries that keep recurring, especially those dealing with logistics.

1. Our doctors say that you folks are weird. Is that true?
Yes. It is quite true.  (uh.. that your doctors say that)

2. Where exactly are you? Near what? And what are you?
We are in Overlook Hospital - which on a mountain, overlooks New York City in a rented suite operating as both a private office and as a sub sub specialty clinic. Our present configuration is the result of an unusual experiment to try to maximize the reach of the expertise of our private office staff into to the realm of our extensive community service programs.

In essence, our private office whose core group has worked together for nearly 30 years, underwrites a large state and community apparatus for services in the arena of children's disabilities. It's a personal feel good thing.

Beyond mere existence, in these nasty times of ever hostile third party mechanisms whose gobbledygook formulas result in our getting 19% of billing, we had to consider actually giving up community service altogether and our programs as well.

Heroes came from two places. Italy. Ansaldo industries, for a while, took over the costs of our children's sports and dance programs including costumes. Home. The Summit Area Public Foundation, which is a group of community professionals who oversee and manage a variety of charitable trusts and funding of community charitable projects, stepped in to fund the ongoing research projects and to help devise a better management plan to keep the past alive. Our current hybrid form is of their design. Every single research or program expenditure was after round table discussion and review. The industrialists in the group actually significantly aided our technology. Go figure.

We also have donations from many other community organizations such as the Van Houten Foundation and generous private individuals which were placed into the pooled trust of the Overlook Foundation.

3. Will my HMO let us travel to New Jersey for treatment?
Usually yes. It is a mix, though. Because we have been involved with self directed charitable services for a long long time - well before HMOs - we have been only too aware of how short the dollar goes. We, especially Mrs. Walsh, had been engaged in outcomes studies with cost analysis before those terms were bandied about. We just called it "Where the hell is all the money going?" and "Is it working out?"

We discovered, for example, that a single three hour operation was generating great results but costing - via the only insurance approved rehabilitation mechanism and the only mechanism approved by state agencies - over $300,000 dollars! Where was the money going? Well, inpatient school tutoring alone was $25,000. Each weekend ambulance home trip and return cost over $1000. In hospital services, when tallied, amounted to about five days of twice daily 30 minute therapy sessions. The rest was all filler. You do the math. We changed everything. Everything. Then we sent letters to the insurers with a listing of where their money was about to be shoveled. Result. They ignored the self serving specs and approved the in-home alternative that was far better and at a minuscule fraction of the "approved" cost. Money talks.

Because our methods cost less and as the insurer does not cover travel, they usually say yes. There are a few who fear that saying yes will open some kind of flood gate. They do not want anybody outside their walls. They say no.

4. New Jersey is a small state.
  Why is it so hard to find vacancies in the hotels?
It isn't if you plan ahead and get early reservations. New Jersey is the third smallest state but has the third largest population. We are the most densely populated state and the most industrial. All those motels and hotels, and there are many, are filled with industrial folks traveling from Zuruch to Brazil to Thailand to Atlantis (could be wrong about that last one), and other nice places. Then there's that Big Apple. There is a very nice bed and breakfast network. Look in the B&B listings as that is the best way. The Ronald Mac Donald House is a great deal, but it is very far south of us and takes you through some of the worst traffic in summer (Jersey Shore).

5. Do you accept Medicaid patients?
Do we see Medicaid patients? Yes, sort of. Many. We accept patients from our region who happen to have Medicaid (New Jersey only).

Medicaid & Medicare have this really thwarting policy. If you see one Medicaid covered patient through Medicaid coverage then you have to see them all. We lose money on every Medicaid patient. So much so that we limit our losses by not even billing (save the huge paper work which used to cost us about 30,000 dollars a year).

As it seems to us that only those who cheat in massive schemes can avoid going broke with Medicaid, we chose to not do that and so we distance ourselves. We see those persons who need our talents as straight charitable cases.

But not other medicaids?
We cannot afford the meager "payments" allowed by Medicaid plans. Payment from out of state Medicaid plans is typically denied outright. Those that do not refuse, delay payment, often for years with huge requirements in clerical and billing services. Payment, when received, is so low that it does not even come close to the cost of postage. We have even gotten notification that their reimbursements are so low as to not warrant >their< mailing it to us (we're talking pennies here folks).

Alternate payment arrangements
for services may be made through the billing department.
  (908) 522 - 5531
 

 

The following Q&A's are in response to lists of chat room dialogs forwarded us by some of our patients. There were several common themes which we will rephrase as more generalized questions to avoid repetition. There were also quite a few misconceptions which will be cleared up - maybe.

A. Snake Oil : Nuzzo is pushing snake oil.
We're not pushing anything. We're not selling anything. In nearly 30 years of doing children's reconstructive surgery, there has not been a single ad nor a promotion from our office (not even pencils with names). Typically snake oil claims are made by OUTSIDERS to a field who are neither certified nor qualified to perform conventional treatments. It behooves them to promote an alternative for that which is unavailable to them (typically a false method).

We are licensed and proficient in the standard methods from which we drifted for certain cases . The reason is that they did not sufficiently meet our patient population's needs. We still fall back on those methods for certain cases when they serve as better choices given certain circumstances. But remember, the disease called cerebral palsy was formerly called Little's disease in honor of Dr. Little who designed the "standard" operation for HIMSELF. He was the first patient. And that was in the days before general anesthesia. Do we know of any technical thing that hasn't changed since then?

Frankly, I gave up apologizing for being different about 15 years ago. Our own methods for which we are noted have NOT stayed the same over the last 30 years, but have evolved and still are evolving as new possibilities arise from what is going out there in the rest of the world. I can't imagine that we will be doing any surgery exactly the same way even five years from now. What a miserable concept!

In our profession's journal, a recent standard operation for paralytic hip subluxation (femur osteotomy) was reviewed and found to have a "good" technical outcome in less than 44 % of cases with outright failure in 8% in less than 6 years. The method was deemed to be satisfactory and considered to be the method of choice. It was not compared to alternatives. That "satisfactory" level of outcome would have us jumping off a bridge. I don't understand the criticism. Somebody has to try new things when results are so limited. Why be soooo negative?

For reasons I cannot comprehend, at nearly 30 years of this, we have suddenly become respectable. We have been training other pediatric orthopedists in our methods and even more importantly in our way of evaluating. We hear it over and over, our methods are not weird nor so intangible once you know what you are looking for and have a sense of how compensatory mechanisms work. That is the key. We made extensive studies of compensatory mechanisms. The logic of what we do comes from that line of thought. It isn't about what is normal or abnormal, but about how things work when certain mechanisms are denied or impaired in some way.

B. Laser Surgery :
We treat neuromuscular patients from birth to elderly - some huge and some tiny. Different muscles have differing shapes and access. The fact is that we use a variety of tools to do what we do. For some of our patients, lasers are way too big. Light can be focused to microscopic sizes but the delivery devices may be way too large for the space required. Lasers can do wicked harm. A badly used laser can inflict more damage than a big knife used well. Most of the tools we use are oddball, but common to eye surgery. Forget the tools, they are only means to the ends. Don't focus on the tools. Focus on the job.

C. You can't see what you're doing
Neither can a blind pianist. The point is what?

C₂. That's no answer.
OK. OK. We treat >>tension<<. You can't see tension. You feel it. You probe it. You stretch it. You test it with movement, but, you don't see it. It may very well be distributed over long spans. Then what? Long incisions to not see the long spans?

D. Varus (Femur) Osteotomies - to avoid or not :
When you have to, you have to. The question that seems to be avoided is what makes you have to? Rather, we get the question posed this way: When everybody is blindly treated without regard to any other variable using method A what is the result compared to everybody blindly treated without regard to any other variable using method B. Does anybody in real life do anything this way? Isn't it just possible that always using hammers or always using screw drivers is not as good as sometimes using neither or occasionally using one or the other?

Let's get even more cynical. If you don't really understand something and don't want to take the time to understand and won't know what questions to ask, and have to make a flaming guess as what to do when confronted by a certain circumstance, then which is better to always do - A or B? What is better - a heel cord lengthening or an appendectomy? Well, if you never do an appendectomy - some people will die.

A hip is subluxing - ?? therefore a varus femur osteotomy is needed? Maybe. But the details? Does the hip socket have sufficient DEPTH. Redislocation is common if depth is poor. It is outright inevitable if a shallow socket is vertical in orientation - VRO or not. A pelvic osteotomy may reorient the shallowness in another direction but still leaves a shallow unstable structure. Do we need stability, from depth? Yes- no. If yes how do we get that? If magically given depth, can the ball be repositioned in the center? If not what is required to do that? The answer is not derived from choice A or choice B "methods". It derives from study of specifics of that one case. What do I need in this particular instance?

This answer : "We have found that method A is not as good as method B." is structured on folly as it assumes uniformity of circumstances.

E. Drooling . Orthopedists treat drooling???
Nope. But in our facility - especially the Childrens' Neuromuscular Center - we have a comprehensive role in dealing with disabilities. As orthopedists whose subspecialty is neurologic disorders, we play a role as primary physicians and help folks find services. We regularly refer to outside and far away places for certain best services. A most rare service (and nearly unknown one at that) is the effective direct treatment of drooling by transtympanic neurectomy. As it is an outpatient treatment very convenient to double up with orthopedic outpatient surgeries, for folks who are at a distance, this possibility needs to be known. That is why we include it here.

F. Nuzzo said to operate but aggressive exercises did the job!
Cool. But be careful. What is being judged? Did function increase without surgery in a young child? Good. But that is expected. The question is whether anybody is monitoring the toll taken on the joints, especially the hips.

One girl had calf muscle lengthening refused because the therapists guaranteed that the feet would be square with the ground in 8 months with aggressive exercises. They were. We operated four months after that to try to restore feeling in the feet which was lost to nerve compression caused by extrusion of both crushed ankle bones (flattened like stomped on potatoes). Both ankles were permanently destroyed and nerve function is only partly recovered.

More commonly, dense "hamstring stretching" improves length, but - somehow - the hips went awry. Leg bones are long. They make great weapons and great crow bars. If the muscle contractures resist more force than the structure of the hip (cartilage in small children - similar to your nose) can withstand, then the hip splays out and the range of motion seems to be and is improved. X-ray does not see cartilage and so this goes unobserved. Later - surprise surprise - the hip matures with bone and is seen to be flattened.

So... place your bets. Feel this leg. Is it just too springy? Or, does it feel like stone? When you pull on that leg (Who actually pulls on a hamstring?), what will give? The muscle that feels totally unyielding? Or the hip socket sitting at the other end of this lever force?

Atlantic City & Las Vegas thrive on this kind of choice. Our stats are as follows: In a practice which is huge in neuromuscular problems including cerebral palsy, the incidence of VRO in our children treated with early percutaneous lengthening is nil. Zero. The kindest estimates judge this number to be an expected 50%. But, hey, it's your dice.

G. Somebody said that Nuzzo said that the real question isn't muscle nor tendon lengthening method. What does that mean?
It means that our focus ought to be the "control arcs" and reflex recruitment patterns. It is confusing. But length - as a goal - is a poor predictor of function. The patient needs to be able to coordinate multiple movements (hip to knee to ankle) all in the direction of function. What happens when the hip has good control in about 80 degrees of flexion (give or take 15 degrees) and the knee is stuck in flexion? Crawling. What if the knees were stuck extended? Butt hopping (sitting). What if the knees are stuck flexed but the hips can extend with fast control? Tall crawling.

See? The question becomes how do I get this joint to that range WITH CONTROL INTACT at the same time I don't mess up that other joint function. Or, something like that. Then, within that context, how much length is good and how much creates wobble?

The other good question is to ask what exactly is interfering with RAPID RESPONSE. Nothing very exciting happens if RAPID RESPONSE cannot be attained. That is a goal in itself. It is the BIGGEST most important functional target. A small range of quick response is far better than a long range of slow response.

Lengthening method, A or B, of a certain hamstring is not a good point to argue. The issue is how to allow the hamstrings as a group to be more rapidly responsive with as little loss of power as possible. Can those two variables be addressed by muscle procedures? Most surgeons say no. But the physiologists know better. The answer is yes, but the devil is in the details. That's why the long winded name Selective Percutaneous Myofascial Lengthening (SPML). Selective is not just what is tight, but what enhances functional reactivity and reduces spastic recruitment. Relative muscle velocities figure in that consideration. See our sections on walking mechanisms.

H. Do you treat Canadians?
Only if they have problems that need it (Out of beer doesn't count). Just kidding. Actually, we see many Canadians. The Canadian "system" is a mystery to us (like ours isn't, hah!) in that some folks come with the blessings of the system and others crawling under barbed wire at night across the border. It seems to vary with the seasons. For many, the smaller interventions of some of our methods save money all around. This seems to be the key issue for other countries as well, wherein travel for treatment is allowed and even facilitated by governments. The biggest single impediment is travel costs. Typically, if a family takes on the travel costs, then government is less skeptical. Just a generality.

I. Why do your phones behave so badly?
That's the polite way of saying it. They seem to be better now that they use the hospital phone trunks. It seems, so far, to be working.

J. Ooooo, I heard that you changed a diagnosis from one exam to the next? Are you, uh, becoming distracted?
That's the nice way of saying it.

I make a point of not looking at the diagnosis every time. The reason is that some conditions evolve. It is way too easy for a label to be put on a kid and then get repeated forever without regard to newer information. It is better to look with fresh eyes as often as you can, within reason.

Also any given condition goes by a wide variety of names. The name used may vary merely with the current circumstance. Newer findings will refine the name used. What starts out as a "rotten cough" could later become called "tuberculosis" with more findings. Those of us who work every day with genetic syndromes know only too well that there are phenotypic labels which may obscure genotypic specificities.

Also remember that the 'diagnosis' of cerebral palsy is a blanket grouping we use for many entities we know don't fit that exact definition. A kid found hanging by the neck and with hemiplegia subsequent to that is called a - what? The kid who is very similar, but from aspirating gum when the ground ball took an unexpected bounce is called - what? Talk about a stigma, they're called anoxic brain damaged. Mmmm. Maybe we can ease by that with a reference to CP that we know isn't technically correct but nearly identical in findings and needs.

There are quite a few with some really odd causes. Insurers deny care for anything without a label that they understand. Folks, you gotta trust me on this, they don't understand much. Most of these diagnostic labels are simply wink wink labels as we have to call them something. I am not alone in this. This sentiment is in writing in nearly every textbook dealing with CP.

My child does NOT have cerebral palsy! It's static encephalopathy. If that makes you feel better, OK. It does not change what we do. We deal in minute specifics of the individual regardless of the names. Also rehabilitative medicine has low regard for diagnostic labels as they nearly never name the things we are most care about - the stuff that is still working. It isn't about what you don't have but what it is you still have intact and might use in a better way.

K. Why doesn't he publish?

Maybe it's an embarrassment? The bugger is hiding something? Dr. Nuzzo answers:

Check my CV. You will see that I publish quite a bit. There is even more that is not listed as it isn't medical (techie stuff, electronic, computer, literary, and such). The question really is, why has he not published that SPML data.

The answer is a question. Why did they keep refusing it? The SPML study was about as well controlled as a clinical series study can get. We, my staff and I, dogged every single detail and included unique complication categories that might trap issues not suspected by us up front as possible. For example, missed opportunity , was a category for counting any later need for surgery (any = dental, urology, eye, whatever) within 5 years of our procedure (initially, went up as we went further). We tracked pain med consumption and time requirement to return to function. We made distinctions between three main groups in order to get results that would have real world meaning and utility.

1) SPML added to other types of surgery
2) SPML alone under 13 years old
  (our main group and the ones most at risk by growth for recurrence)
3) SPML 13 years or older.

Groups 1 & 3 were, as you would guess, very heterogeneous, including trauma, multiple sclerosis, Wilson's disease, severe Alzheimer's related bed ridden contractures etc.

Our interest group was group 2, consisting of mostly CP with a few oddball other inclusions (hemophelia contractures, burns etc). This was a sequential series of over 250 cases followed 5 years, then 6, then 7 then 8 before we let it go.

We had 100% inclusion and triple evaluation. Walking, or if nonwalker, some prestated outcome goal and assessment by original PT, our PT and by me - plus outcomes assessment by parent.

This report was refused publication eight times although presented in large professional public forums at least four times in a way that allowed substantial peer review. For example, Dr. Salter mediated the presentation in French and English in Hamilton Canada (1997) before the Canadian Orthopedic Association & Canadian Orthopedic Research Society and was very positive in his remarks. Anybody know Robert Salter? He does not sugar coat what he does not like. It was also presented in Ohio at a state hosted multidisciplinary meeting dealing with treatment of disabilities:

New Treatment Options for the Severely Handicapped
Columbus Seminars with Ohio Department of Developmental Disabilities
  Children's Hospital Annual Conference,
  Dept. Mental Retardation & Dev. Disabilities
  June 10, 1997, Cincinnati Ohio

Again at the Eastern Orthopaedic Society meeting in West Indies and there are several others.

But, why refused AACPDM & other journal publication?

Correct answer is I don't know. Several things are curious, though. Whenever I oversee a resident or doctoral project that is part of a medical school function, it gets published. Whenever I have gone it alone and used private laboratory or independent funding, the paper does not get accepted and is typically rejected without comment as is the case with SPML.

Here in New Jersey, we have a very crowded population with many uninsured kids. I have done my best to be inclusive which is financially catastrophic. To that end, my practice has sought out and has received public support, none of it university related. For nearly 30 years, well before it was popular, we have been into cost containment and watching the purse. Had to. You may not appreciate it, but, the costs of publication are high. When the 7th refusal was in hand I quit.

The eighth attempt to get the study published was rewritten by a very driven nurse practitioner who was simply certain the SPML study would be published if certain linguistic details were attended to. Wrong.

At this point, I consider the SPML data stale. It would be misleading now. I know a lot more than I did then, and have more refined conclusions. I am teaching as many practitioners as are willing to learn. Also, the internet has made the slow process of journal review less worthy. The outcomes are here.

Another big problem with getting published is that SPML results are not derived from incisional shape or from some geometric characteristic of the operation. SPML outcome flows from the KNOWING, not the DOING. You need to get a very good empathetic sense of the child and how that child reacts beforehand. You are throwing volleys of tiny procedures, in altered ways, at the specifics of the situation. This Yoda-like aspect, I know, bugs many science formalists. Just where do I cut and how is it stitched?

Notice the mileau. A paper was accepted by and presented at POSNA with its published summary, which compared two groups: Achilles surgery through a vertical skin incision versus Achilles surgery through a horizontal skin incision. It had decimal places. It did not address the differential ranges and power curves of the three muscles that share that tendon nor the reflex reaction time considerations, nothing close to what I think is relevant. Horizontal skin incision versus vertical. That's what the peers are reviewing. Count me out.

Right now, the art in this area has far outpaced scientific dialog. You can't even discuss this stuff in a meaningful way in print as there is no shared vocabulary nor commonality of relevance. The diagnostic termonology is dreadfully irrelevant and off the mark.

I will no longer fight this windmill.

 

 

More FAQs will be added and see below for specifics...

(fact is, we don't have all the answers - yet)