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This one is about: Q&A Chat with Dr. Canady, December 26, 1997


Subject: Q&A Chat with Dr. Canady, 12/26/97

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Question & Answer Chat with Dr. Canady, December 26, 1997

Disclaimer: The opinions expressed here represent an academic opinion about the general care and treatment of patients with craniofacial disorders. No attempt was made to practice medicine in any form, nor was there an attempt to treat individual patients. Any opinions or views expressed were general in nature and not specifically addressed at any particular person. If you desire an individual opinion a physical exam will be necessary to render that opinion. If you cannot get adequate help in your location, you may call 319-356-2168 and ask Karen to make an appointment for you.

Note: Joanne Green is moderating the chat. It also appears that some of Dr. Canady's responses were truncated; we apologize for that.

Joanne: Ok, we expect that there will be more here tonight. I want to welcome all to the Q & A chat.

I will give you voice when it is time to ask your questions. You can send me questions by speaking to me via private messages. Anyway, I want to welcome Dr. Canady -- Melissa, I believe, has the first question.

Melissa: I have a 2 year old daughter, Hannah with PRS and Sticklers. She has had 2 soft palate repairs at the age of 6 months and 12 months. Both times approx. 6 Days post op the stitches came undone (dishesed?). She is left with a small linear cleft about 1" long and 3/4" wide just to the left of her uvula. Her palate is very short and she will require a pharyngeal flap in the future. I have 2 related questions.

Dr. Canady: Ok.

Melissa: 1)  Could the Sticklers, being a connective tissue disorder cause the poor healing of the palate?  and ...

Dr. Canady: I am not sure that there have been any great studies on that but it is an excellent question. We were just talking about that in our team a couple of weeks ago about how some of the kids with some of the syndromes seem to have more fistulas than others.

Melissa: 2) Would the past history of her poor healing (even though we use a reputable cleft surgeon who can't explain why the stitches came undone) be an indication of what her future surgeries outcome will be, too? I feel that we are having surgeries in vain.

Melissa: This is not a fistula. This is a full blown cleft, just a lot smaller than what she started with.

Dr. Canady: Certainly there are a lot of reasons that wounds don't heal -- it is important to try to get some structural integrity there though so that she can begin to develop normal speech patterns. I would guess that her hydration, caloric intake, etc were ok post op?

Melissa: Yes, eating was fine, arm restraints for 3 weeks. Nothing in her mouth but liquid by dixie cup, etc, etc. No infection either. The stitches literally came undone - TWICE.

Dr. Canady: It would be unduly arrogant for any surgeon to say that they have not had some patients who just don't seem to heal properly no matter what they do. I assume that absorbable sutures were used and they may have dissolved faster than usual (this can happen in certain people) and this may have had some impact on the problem. One of the problems with absorbable sutures is that the rate of dissolution may vary a lot in different people.

Melissa: Should I ask about using something stronger for the pharyngeal flap? say - fishing line? LOL sorry, I have to try to find humor in it somewhere. But should absorbable sutures not be used in the future?

Dr. Canady: No, not necessarily. There are a lot of different types of absorbable sutures and they vary a lot in their time to dissolution or more properly time to loss of strength and breakage. If absorbable sutures are not used then an additional anesthetic would be necessary to take the sutures out...and that, of course, has its own risks.

Melissa: I understand. This gives me something to discuss with our PS next time we see him. Thank you very much for your time and suggestions.

Dr. Canady: I am not doubting what you say about them coming untied, but that would be really unusual. I would have to believe that the suture actually lost its integrity and broke (or appeared to come untied). For the record, the most common reason for palatal breakdown is not a suture problem, but one of tension at closure leading to a pulling apart instead of proper healing.

Joanne: Thanks, Melissa. Thank you Dr. Canady. Kristi now has a question for you.

Dr. Canady: OK Kristi

Kristi: My question has to do with dental implants...

Dr. Canady: OK

Kristi: How feasible are dental implants for someone over 30 with a lot of scar tissue in and around the gums of the upper jaw?

Dr. Canady: They can be a great solution or they can be impossible to do -- it all depends on the bone situation in the alveolus in the area of the proposed implant. Tim Turvey (an oral surgeon) and I worked on the implant booklet for the ACPCA and I think that booklet has some very good information. In general, it is harder to graft bone to the alveolus in adults (doesn't getting older really stink?) than it is in kids and the bottom line is that there must be implant. You would need Xrays of the proposed implant area to make an intelligent statement about an individual case done.

Kristi: My PS and I discussed it just very briefly this past summer. Thanks :-)

Dr. Canady: I am not sure of the exact title of the ACPCA booklet I just referred to because I worked on it while it was in production -- I am pretty sure it is out now and it may be titled alveolar bone grafting with a chapter on implants...

Joanne: Thanks. I have a question that came up on the list (Cleft-Talk).

Dr. Canady: OK

Joanne: There is now something of a controversy concerning bone work and the use of distraction devices, rather than surgery to move bone. Can you shed some light on that controversy?

Dr. Canady: Sure. Distraction is an exciting concept in the maxilofacial skeleton. The technique is actually fairly old - it was "popularized" by a Soviet surgeon named Ilizarov and he did his work on long bones. Dr. Joe McCarthy in NYC has done the most research on animal with the technique and it is gaining popularity in the last 18 months or so. Like any new technique, not much is known about the long term effects but at least for now it seems that early relaps

Dr. Canady: traditional orthognathic techniques. It still requires a tremendous patient commitment to keep the intraoral attachment devices clean. There can be some challenges with numbness, etc afterward depending on how and where the bony cuts are made, but this was true with traditional techniques as well. Done.

Joanne: Are there any comments concerning outcome -- for instance, can this method move the bone the same distance?? also, how long does it take to accomplish this, and of course, you hear about the facial scars.

Dr. Canady: In theory, bone can be moved as far or further than traditional techniques. With external devices there was some scarring, but there are now intraoral devices available for the mandible and the maxillary device that is out attaches to a halo like device (a metal band that fits around the head and attaches with screws to the bones of the skull).

The scarring seems to be individual, like all scarring. In some cases it was barely noticeable and in others that I have seen in pictures, I thought the scars looked worse than the original deformity.

The time frame depends on the distance moved, but it is usually in weeks with some sort of stabilization for the same amount of time as the distraction. Now I'm really done.

Joanne: Thanks. Shane has a question for you now.

Dr. Canady: OK go ahead Shane

Shane: Hello, This is a discussion some of the adult CA have had. What is known about the long term effect of bone donor sites (hip vs. skull etc) ... and more specifically I wanted to know exactly what is done when bone is taken from hip. I seem to have lost some mobility in hip rotation (I practice Martial Arts ) and was muscle actually cut?

It often feels like I'm 'missing' a muscle...my hip does not seem to want to do what my instructors are telling me to do.

Dr. Canady: One of the oral surgeons and I authored a paper a few years ago about outcomes of bone grafting and activity. We looked at 50 patients and had their parents follow up with us via phone and a questionnaire. None of the patients in this group had any long term significant limitations in their activity, though in all honesty, I cannot remember if any of them practiced martial arts.

The insertion of some of the muscle on the side of the leg is divided to access the bone, but none of the belly of the muscle is actually cut. I am absolutely sure that the bone inside the hip regenerates because I have had occasion to go back into a hip and the marrow is there. This is also the experience of the bone marrow transplant people ... There are a lot of reasons for loss of mobility and I am sure that you have already thought about all of t

Dr. Canady: compete in athletics at the collegiate (Division I) level and be successful after bone grafts, but I would expect that in this, as in everything else when it comes to wound healing, each individual has a slightly different response. Done.

Shane: Ok, thanks.

Dr. Canady: You're welcome.

Joanne: Thanks, Dr. Canady. Melissa has another question for you.

Dr. Canady: OK

Melissa: Back to 2 year old Hannah, PRS and Sticklers. Of the palate lengthening techniques, which gives the best results for very hypernasal speech, BUT Considering that we are dealing with a palate that does not heal well with a lot of tension created during surgery.

Dr. Canady: Well, that is a good question. As I said, I think the first step is to achieve closure of the palate, ideally by surgery, but at least by an obturator if nothing else seems to be working so that the child does not develop a lot of compensatory articulation techniques that have to be unlearned via speech therapy.

We individualize the solution to our patients after a workup which includes speech therapist subjective analysis, either videonasendoscopy or videofluroscopy or both and nasometry readings. Some patients can be managed with a secondary Z plasty, some need a flap and some can be helped with a sphincter type operation. Usually, that involved analysis will point toward a solution that is best for that particular patient. Done.

Melissa: I figured that is what you would say. LOL, can I ask one question about what you said?

Joanne: Go ahead, Melissa.
Dr. Canady: Sure. I have one more thought hang on a minute...

Historically, there was a technique to use a pharyngeal flap at the time of palatal closure the so-called "primary pharyngeal flap." This is not a technique that I use a lot any more but it might have some application in closing very very wide clefts of the soft palate or in cases where there is a lot of pre-existing scar. The reason I don't use it any more is that the majority of kids who have cleft palate repair do not need a flap so it is not u

Dr. Canady: everybody...go ahead an I'll shut up now.

Melissa: You said the first step, which should be done as soon as possible is to close the cleft that she still has to avoid compensatory articulation - wouldn't that still occur even if the small cleft were closed, due to the short palate? Wouldn't the speech still be hypernasal? It seems that closing the palate wouldn't really achieve anything at this
point. Does that make sense?

Dr. Canady: That is really hard to say. I was just having a discussion with one of our speech pathologists the other day and we decided that one of our pet peeves was the term "short palate". We are not sure we are smart enough to look at a palate any more and label it "short" because we have seen so many "short" palates do a pretty good job over the years. I would really have to see your daughter to make an individual statement. Done.

Melissa: Ok, I understand. Thank you very, very much. By short, I just mean, not able to build up the pressure to make plosive sounds. Even if her cleft were closed, her palate still would not be able to give her the closure to make those sounds. Do you understand what I am "trying" to say?

Dr. Canady: That is a good point, but the only way to know that is to have a closed palate and have her continue to acquire language and see how it goes. We usually don't make the final determination of secondary management of speech problems until age 3 or older because in our experience, the kids can fluctuate a lot when they are younger. We also don't do secondary management on the basis of only one visit for the same reason. Done.

Melissa: So, just because she cant say B or D, or P, etc, doesn't mean that she won't be able to until she has a lengthening surgery done? Sorry to have been long winded, I was trying to keep things going until Joanne got back. Thanks very much Dr. Canady.

Dr. Canady: As long as her palate is as open as you have described, she will not be able to make those plosive sounds. What happens after her palate is closed is anyone's guess in my opinion.

Melissa: Ok, thanks. Joanne, your turn.

Dr. Canady: I don't think you are long winded, you are appropriately concerned about your child.

Melissa: Just trying to get answers Dr. Thanks for the support.

Dr. Canady: I am somewhat of an optimist and I try to never predict how kids will do -- especially what they can't do...and I am always glad when they surprise me.

Joanne: Jen has a question for Dr. Canady now.

Dr. Canady: OK Jen

Jennifer: My name is Jennifer, I have a 15 month old son that was diagnosed with a rare syndrome called Fraser Syndrome. First, have you heard of it?

Dr. Canady: No, I honestly have not, sorry about that. What does it consist of?

Jennifer: Oh, boy, well what Caleb has is a 2 mm airway, cleft l/p, webbed fingers, absent left eyelid, minor skull deformity, missing right kidney.

Dr. Canady: Does he have a tracheostomy now?

Jennifer: Yes...and his palate is going to be repaired before the reconstruction of the airway. Does that seem like the right way to go about things? And what are your views on palate repair? Caleb will be 17 months old at his repair.

Dr. Canady: That sounds reasonable to me. I usually prefer to do the palate when the trach is in place...I just think it is safer.

Jennifer: I should specify, do you think our PS is waiting too long to do the repair?

Dr. Canady: I think the timing of the palate repair has to take into account all of the patients medical challenges. It is a little hard for me to say specifically, but I have certainly done palates at 18 months or even later if the situation warranted it. Let me say something about syndromes (on my soapbox...)

Naming syndromes is a convenient way of talking about a constellation of problems, but I am not sure that it is always a good idea because I really resist the "labeling" of kids with syndromes. There is very good psychological research to support that kids will live up to (or down to) our expectations of them and I fear that this is what happens when people start to talk about "Down's kids," or "Nager Kids" or whatever. My own approach is to not worr

Jennifer: I totally agree with you!! Will there be any issues when they do the palate repair and the fact he has a trach?

Dr. Canady: syndrome and what it supposedly predicts and to concentrate on the individual challenges present and deal with them as necessary.

Dr. Canady: The trach site should be clean and free of granulation tissue and air should pass easily through the trach cannula. That anesthetic is a good time for the peds Oto people (or whoever is managing the trach) to do a direct laryngoscopy and bronch to help plan their reconstruction. Are they planning a cricoid split? Done.

Jennifer: I guess I'm not sure the correct term they've given it. It's webbed at the vocal cords, which I forgot to mention, and below. They explained it like opening it like you would cut a can in half the long way...I think.

Dr. Canady: Again, it is hard to say specifically without seeing the patient, but I have never hesitated to do a palate with a trach in place. What you are describing sounds like a cricoid split...

Jennifer: Well, that's the plan of our PS and ENT. Makes me feel better that you have done the repair with a trach. Thanks Dr Canady!

Joanne: Thank you, Dr. Canady -- Cindy now has a question.

Cindy: This question is about Sarah who is 8. She has had many operations including a Pharyngeal Flap 2 1/2 years ago. After the flap she developed sleeping problems. She no longer sleeps more than 5 hours a night. This happened in conjunction with the flap. Never had sleep study or anything else. Is there anything to be done at this point to
help her with this problem?

Dr. Canady: In kids, the airway is usually narrowest at the area of the subglottis (right below the vocal cords). The cricoid is the only complete ring of cartilage in the trachea and the operation is basically to open it up a little...

The workup of sleep problems after pharyngeal flap includes (in my opinion) videonasendoscopy of the flap to see how open the ports are and a sleep study. I have a very low threshold to get a sleep study to see what is going on...just make sure that you don't do it on a night when Sarah has a cold or it may not be completely valid because of the extra obstruction....Done.

Cindy: So, you are saying this is quite normal for a child after the P-flap is done?

Dr. Canady: No, I don't know if it is normal for Sarah or not. I am pretty aggressive about working up any changes in sleep patterns after a flap in the kids in our clinic. Done.

Cindy: Ok Thank you. I will discuss this with our PS, who I see regularly.

Dr. Canady: That sounds like a good idea. The sleep study is one that the kids tolerate pretty well and most 8 year olds don't have much trouble with the videonasendoscopy either...

Joanne: Thank you, Dr. Canady - I have a question regarding bone graft.

Dr. Canady: OK MomBear

Joanne: Anyway, my son, Joey (bilateral cleft) is 10, scheduled for bone graft in two months -- been in braces for 2 years...I am anxious to have it done before he gets much older, and understood that mixed dentition was what they wait for, but now I hear that kids are having bone graft at age 5 and 6! What is the rationale for having bone grafting before there are permanent teeth?

Dr. Canady: I have done kids at a wide variety of ages...it all depends on their X-ray presentation and what permanent teeth they have (or don't have...) The main thing seems to be that placement of the bone graft prior to the eruption of the canine tooth adjacent to the graft just seems to do better. I don't know why and I don't know anyone else who does either...in my lab we can make the graft take better by the addition of growth factors (specifically tra

Dr. Canady: beta), but that is probably not going to be done in people for a while yet. Some day I think we will have a better way to get bone to take in this area because it is a challenge in a lot of patients to get all we want in that space. Doesn't seem that it should be that hard, but it is and I guess in all fairness there is usually a significant amount of scar in that area and the human mouth is the dirtiest place on earth (germ wise!)

I should say that the bone takes better in rabbits treated with growth factors, we have not done human trials (so the FDA doesn't get after me...)

Joanne: Hmmm... Joey has what appears to be a canine growing in the center of the palate. LOL -- we won't tell. LOL

Dr. Canady: It is really hard to tell what teeth are what without an X-ray...it would seem a little early for the canine to be coming out and usually it is not erupted that far away from the arch...supernumerary tooth maybe?

Joanne: Maybe. The orthodontist is calling it "a Pre-cuspid, probably the canine"

Dr. Canady: Could be...he would be in a better position to call it. In general, we like to get as much bone as possible in the cleft site prior to movement of the upper incisors, because one of the major reasons of the graft is to protect the roots of the cleft adjacent teeth and prevent devascularization of the teeth from moving the roots into the bony gap. Done.

Joanne: Thank you -- guess it's just freak-out at the Green's again. LOL -- Cindy has another question regarding her son this time.

Dr. Canady: OK Cindy

Cindy: This question is about Branden - 4 months - with bilateral cleft lip and palate. He has a Latham Pin Device in and the PS is having him go back in this week to have it redone because he wants to pull the premaxilla back more. It is already pretty even with the rest of the gum in that area. What are the long term effects going to be when he gets teeth, the bone graft etc??

Dr. Canady: The Latham device has its supporters and its opponents. In general, I don't know that the Latham device has been specifically shown to cause any adverse effects in general because of its use. There can be damage to tooth buds because of how it is retained and I am not aware of good studies that show that patients treated with Latham devices need more or less maxilary osteotomies. It does make the lip easier to close if the premaxilla is not way out.

Cindy: OK Thank you.

Dr. Canady: You're welcome.

Jennifer: Can I ask one more quick question?

Dr. Canady: Sure, go ahead.

Joanne: Absolutely.

Jennifer: When they repair the palate, then the airway, is there any chance that he could have breathing difficulty because of the palate repair? Does that make sense?

Dr. Canady: Yes, it makes sense. There can always be airway problems after palate repair, but usually these happen in the first few hours or days after surgery when the swelling is the most. The trach allows airflow directly into the lungs and bypasses all that so that is why I have no problems with doing the palate while the trach is in...Done.

Jennifer: That makes sense and comforts me a lot! Thanks so much!

Dr. Canady: No problem, thanks for asking.

Joanne: Thank you, Dr. Canady. If there are no further questions, I want to thank you very much for being here tonight to answer our questions for us.

Dr Canady - we just realized today that we have or have had six different families who have three kids each with cleft -- I represent the ONLY one who adopted, and yet, each of us felt all alone. Like the only one. Maybe this group is just unique, I don't know, but that's a BIG percentage of 250 (CT Members).

Dr. Canady: That is amazing.

Joanne: Might be more - those were the ones we could come up with who have been active in the group.

Dr. Canady: If the families would like to participate in ongoing studies of the reasons behind clefting, Dr. Jeff Murray (Peds Genetics) in our clinic is interested in families with a number of individuals affected with clefts. Usually all he needs is a cheek swab. He is part of the Human Genome project and is a really super guy.

If you call my office at the number I listed, I can put you guys in touch.

Jennifer: I would participate, but would we be of help, with Caleb being already diagnosed with the syndrome?

Dr. Canady: That would be up to Jeff. If you call my office I can put you together with him.

### END OF CHAT LOG ###


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