You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: AOL Chat with Dr. Carstens, August 27, 1997
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America Online Chat with Dr. Carstens
August 27, 1997
Each month, Dr. Carsten (Dr. Carstens) has generously agreed to come online and answer people's questions. Below is the log of the chat.
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Joanne: Hello Doctor.
Kristi: Hi Dr. Carstens :-)
Dr. Carstens: Is everyone doing well?
Stephanie: Hello Dr Carstens
Joanne: Welcome to the chat, Dr Carstens. We are glad you are here. To start out
tonight, Kristi has a question for the doctor.
Kristi: My question is in relation to my upcoming surgery. How successful is tightening up a port on a pharyngeal flap? I have been told that it is not always successful. Can you give me any stats on success rates?
Dr. Carstens: There have been attempts to quantitate nasal air
escape in various terms: intra oral pressure, nasal air flow etc. The problem is
relating the number that such measurements give to the actual sound of speech only
then could one truly compare results. The other problem is that the pharyngeal flap
is not made out of plastic. It is living
tissue which can SHRINK. After surgery is the period when the flap will exert maximum
effect on the nasopharynx. Probably you should expect a period of two to six months
for the tissue to settle into its final geometry.
Kristi: OK Thanks :-)
Dr. Carstens: In all, the pharyngeal flap is quite effective in decreasing nasal air escape. You will have to see how it affects your speech.
Kristi: Right. My PS has told me that there is no guarantee that this will work cuz of all the scar tissue.
Dr. Carstens: The success of the procedure is proportional to
the size of the flap relative to the size of the nasopharynx. There may be iron
limits to the amount your PS can harvest for the flap if you have a lot of scar in
the donor site for the flap.
Kristi: Thanks :-)
Joanne: Thank you, Dr. Melissa has a question for you now.
Melissa: I have a 21 month old who has had 2 soft palate repairs both of which were unsuccessful. Both times the palate has reopened at the suture line. She was recently diagnosed with Stickler Synd/PRS. I have 2 questions:
1. Could the Sticklers have played a role in the surgeries not "taking" because of the connective tissue aspect of Sticklers? and 2) will future surgeries - pharyngeal flap be a problem given her past history? Her palate is very short and scarred. That is it.
Dr. Carstens: How much of the soft palate is together 25.50.75%?
Melissa: She has a small slit about 3/4" long and 1/2" wide just to the left of the uvula but the palate is very short and she is very hypernasal.
Dr. Carstens: How old is she now?
Melissa: She is almost 22 months. Surgeries were performed at 6 months of age and 12 months.
Dr. Carstens: She will be going through a period of explosive growth in the next few years. I would sit back, let her mature, let the soft tissues grow and think about a palatal lengthening in a few years. That will get rid of the slit. You can then wait to see the speech result. REMEMBER most of speech consists of ear mouth coordination with lips and tongue more major players than the palate.
Melissa: Is the palate tissue (healing in particular) affected by Sticklers?
Dr. Carstens: No there is no correlation.
Melissa: Ok, thank you very much.
Joanne: Thank you for that answer, Dr Carstens. Stephanie has a question for you now.
Stephanie: My son Nolan is 8 mos. old and also has PRS, no
related syndromes diagnosed. His cleft hard and soft palate went from gum to gum on
the sides and he had a little hard palate intact in the front. It has grown together
by more than half in my opinion. His plastic surgeon does not want to do the repair
until 18 mos. but it seems that most of the PRS children that I've heard of are
having theirs done much sooner. What is your opinion on timing for repair on PRS
clefts, and can you speculate on why Nolan's PS is so insistent that his surgery not
be done any sooner?
That's it.
Dr. Carstens: Palate repairs used to be done at 18-24 months. I was one of these "late comers" and my speech is fine. Not everyone does as well. We know now that it takes 6 months for palatal edema (swelling) to go down. If speech really takes off between 12-18 months it is possible to understand the rationale whereby the repair is done between 6-12 months of age. At CHO Children's Hospital Oakland we do them around 9 months.
The actual size of the cleft in the palate diminishes as a fraction of intra oral surface area as the child grows older. Waiting until 18 months will mean a smaller cleft to deal with but I can't speculate about what your PS is concerned about. Is that helpful?
Stephanie: Nolan has just had a g-tube put in to deal with his inability to eat enough. It is hard to think that we have 10 more months of this when other kids are having their surgeries done sooner. The main reasons I'm getting from Nolan's docs is that
Dr. Carstens: The best answer to your question is simple communication with your surgeon.
Stephanie: Yes, I've tried to talk to him about it, and he flat out said that he won't consider it. Thank you.
Dr. Carstens: ASK him/her what is on his/her mind. Philosophical comment. As surgeons we all have our own prejudices and beliefs. It is okay to have a point of view...and explain its rationale. But it is more politic to listen to a parent's concerns and meet them head on even if it goes in a direction which one does not wish to pursue.
Joanne: Thank you. Kristi has another question for you now.
Kristi: My question has to do with hardware. I've been told that I have a piece of
hardware that has failed. It is in the right side of my nose. Is it normal to remove
rather than replace? That's my question.
Dr. Carstens: Your question is unusual since I cannot visualize what type of hardware you are referring to or where its sits anatomically in the nose.
Kristi: I can give you a better idea. It sits right where the nose meets the eye.
Dr. Carstens: Sometime plates are removed for being bent or broken. Having just seen the rest of your question I assume that the plate goes across an old fracture or osteotomy (but in the bone) site. I further assume that you are far removed from your surgery. Thus your nasomaxillary bone must have healed and it would be okay to take out the plate. Why put another back in if the bone healing has already occurred? Okay?
Kristi: I have a total nasal reconstruction. The PS doing the
surgery did not put it in.
Kristi: Right. He will have a better idea when he does the surgery. Thanks :-)
Joanne: Thank you for your response, Dr. Carstens. Janet has a question for you now.
Janet: Dr. Carstens, My daughter Hannah - 16 mos has cleft lip and alveolar ridge. Her repair was done at 4 mos. The PS wants to do a revision sometime around 4 years. Her lip is VERY thick - so thick, I can't see her top teeth, this concerns me. Do you think we should wait for the revision.. or have it sooner? Is this thickness normal? I also don't want to be too aggressive with her treatment either.
Dr. Carstens: The appearance of Hannah's lip is something you
probably notice more than does she. When she nears school age these issues will
become more apparent. In the meantime you have the luxury of time for the tissues to
soften and stretch out with the growth of the face. Each surgery creates its own
problems. Wait, wait, wait.
Janet: I know, but she sometimes has a hard time biting into a cookie because she
can't get to her teeth. So, is 4 too early? Should we wait for growth?
Dr. Carstens: She'll be in good shape to evaluate. She how she looks pre-school. Unless it is terrible she'll probably get through until bone graft time 6-7 years. You just have to wait it out.
Janet: Yeah...I know you're right.
Joanne: Thank you, Dr. I have a question for you that has come up on our list. The question concerns bone graft, and the materials used. My son, like most, had bone graft done, using autogenous bone. We are very pleased with the results. However, many parents do not want to create a donor site. We hear of Demineralized bone, or cadaveric bone - and even artificial substances used instead. My question is: How do these other materials compare with autogenous bone in terms of overall success of the procedure - right away, and in the long term?
Dr. Carstens: Very sophisticated question. Let's ask what the bottom line is?
Joanne: Bottom line is going to be the integrity of the dental arch, I would guess.
Dr. Carstens: The incorporation of the bone into cleft is never 100% In fact this is due to resorbtion. Let's look at the initial result, ie. take. This is based on the ability of bone cells to cross the alveolar cleft site, mingle with the bone graft or substitute, populate it and lay down a new matrix. This depends on the interaction between the osteoprogenitor cells and the scaffolding which the surgeon puts up for them to crawl on. Just like a set of monkey bars on the school playground not all kids climb in and out at the same rate.
The idea of substances like BMP bone morphogenic protein to stimulate this process is probably in the crystal ball for the future. Taking a breath.
Joanne: ok. LOL
Dr. Carstens: Do you want to go further into this topic...may become esoteric.
Joanne: Bottom line, I guess is - how does the long term effectiveness compare between autogenous bone and other substances? In other words, when parent is looking at bone graft, what is the trade-off between donor site and artificial substance?
Dr. Carstens: I think for now it is hands down for autogenous. There is plenty of available bone in the iliac crest and the child will replace the missing bone in the hip rapidly.
Joanne: Thanks, Dr. That's what I thought was true. I feel good knowing that I am giving accurate advice.
Dr. Carstens: If we are talking about a patient with a 7 inch gap in the mandible and we have the ability to replace that with irradiated cadaver bone, the patient's own marrow cells and BMP THAT may be a very good futuristic alternative to a microvascular tissue transfer.
Joanne: Right. Mostly though, we are just talking run-of-the mill cleft of the lip and palate. Terri has a question for you now.
Terri: How common is a tongue stitch during any palatel surgery in PRS children and when is it done and what is the criteria and is it usually charted
Dr. Carstens: The tongue stitch is a old-fashioned, crude and effective concept. The Application for which is rarisimo. How often does airway control become an issue such that the alert nurse or resident pulls it out to control the tongue? I have seen it used only once. Yet we do this as cheap insurance. What is the price of a piece of silk suture? So the criterion is to put a back-stop in "just in case." It is important to note that children are incredibly healthy...but they are also quick
Terri: My son has had it 3 of his 4 surgeries used after extubation.
Dr. Carstens: to "turn sour" this makes pediatric anesthesia a constant challenge even the "simplest" case can become difficult. Therefore I submit that this surgery should be done where appropriate pediatric anesthesia and ICU are on-hand. How's that?
Terri: His tongue fell back after they removed the breathing tube.
Dr. Carstens: It only takes a minute to put in a 10 cent piece of suture so you have seen yourself the utility.
Joanne: None of my kids had tongue stitches used. Would most medical professionals feel that that would be negligence on the part of my doctor?
Dr. Carstens: On the other hand the airway issues may well have been related to the type of anesthetic agents used such that he couldn't defend his airway in the RR (recovery room.)
Dr. Carstens: I have often not put them in when surgery went very smoothly and I don't consider myself negligent.
Joanne: Thank you. I also have full confidence in my doctor.
Joanne: Leigh has a question for you now.
Leigh: Okay, Dr. As we are slow this evening and have some time, I would like to back up for the benefit of the new parents who will be reading this log and give you a fun question! Could you please describe for us the various lip repair techniques used in both bilateral and unilateral repairs (in layman's terms) and why one surgeon may or may not use one over another.
Dr. Carstens: OH MY GAWD! There is a three volume text sitting behind me here in the study.
Joanne: Well, that should take up the rest of our time, LOL
Leigh: You could just give your opinion.
Dr. Carstens: Surgeons use techniques for a variety of reasons. That's the way my professor did it. It works okay for me. I went to a meeting and this made sense so I read up on it, watched it done, tried it, and I like it better than what I was doing before. These are tongue in cheek. Serious students of the cleft problem are never satisfied. This means constantly evaluating one's own results and those of others.
One forms over time a philosophy of what the repair is intended to do. One should have a variety of "tricks up one's sleeve" to match individual problems.
The first point I would make is that the clefting process is complex and diffuse rather like a bomb going off with concentric rings of damage spreading outward from ground zero. The process is not different between the unilateral or bilateral cleft; only the anatomic consequences. In the same way that what one sees depends upon where one sits, what repair techniques one uses depends on how one conceptualizes the problem. All progress in surgery depends on changes in the paradigm.
The unilateral and bilateral repairs should have common goals. First, address the forces which have caused distortion of the bony segments -- ie. the abnormal muscle attachments on the cleft side, unification of muscle-periosteal sleeves across the midline so that they can "hold hands" like they are sup
Second, restore key anatomic structures, the soft tissue covering of the cleft alveolus, the position of the nose, CENTRALIZE the soft tissue covering of the face from BOTH SIDES. Third one should strive to replace missing cricitcal tissue with like tissues. Eg. the mucosa of the nose on the cleft side is deficient -- so replace it with mucosa stolen from the lip.
So we must deal with the problems of Division, Deficiency, Displacement and Distortion in reverse order so that the cleft is anatomically reconstructed from the inside out. Pant...pant
Joanne: I think you have answered the question, Dr. Bonnie has a question concerning scarring in the nose.
Bonnie: My daughter had her lip repaired in June. She was 9.5 months. She has a uni cl&p. The inside nostril on her repaired side is thicker than the other normal side. Will this get better? It has been 2 months since surgery.
Dr. Carstens: It is unlikely that your daughter has more tissue inside the nose on the cleft side. That is because the mucosal lining on that side is always DEFICIENT. What you are probably seeing is a consequence of the surgery. The base of the nose is often tethered down to the triangular shaped opening in the maxilla called the pyriform aperature. This site is often misshapen due to the way the muscles attach in the vicinity. When you look at your daughter from below (ie. when changing her diaper) is the level of the alar base (ie the crease between the nose and cheek) on the same horizontal plane as the normal side? Or is it depressed/recessed? Can you recall?
Bonnie: It is a little depressed.
Dr. Carstens: The periosteum is the tough membrane which attaches the soft tissue envelope of the face (including the alar base) to the maxilla.
Bonnie: They also closed up her normal side a little.
Dr. Carstens: If the alar base is not elevated off the maxilla -- it remains tethered there. Thus, when one rotates the cleft side of the nose into position to repair the lip this tethering forces torques the nasal wall and turns the inside tissue relatively more outward along a vertical axis. Thus the inner side wall of the nose "shows" more than before, giving the nose a thicker look. Does this make sense?
Bonnie: Thank you yes.
Joanne: Thank you for that answer -- I have another quick question from the list. A little guy had a lip revision done a few days ago. In daycare, he injured his lip -- lots of blood, and the stitches tore loose - looks bad. What can be done now to repair the repair?
Dr. Carstens: Right now the tissues are all inflamed as a physiological result of the previous surgery. Probably the best course of action is to provide good wound care -- if he were seen right away, replacing the sutures, if later just dressing changes until all is healed. Come back in 6 months when tissue conditions permit any formal revision.
Joanne: Thank you. I see our time is up now. I want to thank you again for being with us. This chat log will be posted soon to the website. Thank you very much.
Kristi: Thank you Dr. Carstens. :-)
Dr. Carstens: Thank you all for posing your usual tough questions.
Bonnie: Thank you
Dr. Carstens: Buenas noches a todas y todos.
Joanne: We really appreciate the time you give us. I know this
is a great help to many. Good night to you too.
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