You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: AOL Chat with Dr. Carstens, July 2, 1997

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America Online Chat with  Dr. Carstens
July 2, 1997

Each month, Dr. Carstens has generously agreed to come online and answer peoples questions. Below is the log of the first session.

Dr. Carstens: Hello everyone
Kristi: Hi Dr. Carstens!
Joanne: Hello, Dr, Carstens.
Joanne: We want to introduce you all to Dr. Carstens -- he is a plastic surgeon in Oakland Children's Hospital.
Dr. Carstens: It is a good thing I am on-line having just been tortured by my orthodontist. So typing is just fine!
Joanne: Oh no, Dr. Hope you are feeling better

Joanne: Ok, our first question tonight will be from Christina.
Christina: My daughter Paige has on Mandibular distractors and they have been on for 7 weeks. We stopped screwing it forward about a week ago and it didn't come all the way out. Is there something else that can be done? We went all the way to the end of the screws and they are pretty bent.

Dr. Carstens: Mandibular distraction is a relatively new technique. It is practiced differently in different centers. Some folks distract in just one dimension others in two. Is the distractor internal (in the mouth)?

Christina: No external; and in only one direction.

Dr. Carstens: What are the goals of your team for Paige?

Christina: She has a trache and she has pierre robin, they want to get the trache out.

Dr. Carstens: So they are trying to lengthen her jaw to stretch the soft tissues? In this way they hope to get the trach out?

Christina: So they can get to her palate - to close it and then get the trach out.

Dr. Carstens: Has your surgeon reached the limit of the device (ie. is this going to be a STAGED expansion?)

Christina: It is at the limit of the device and they weren't planning to stage the expansion.

Dr. Carstens: It is hard for me to speculate here. Seems like they either have to stop here, let the bone and see what has been accomplished or plan another round of expansion in the future.

Christina: Ok thank you.

Dr. Carstens: In our center expansion definitely has its limits.

Joanne: Melissa, I understand you have a long question - take your time if you need to.

Melissa W: Hi Dr. Carstens, My 18 month old daughter had 2 soft palate repairs at 6mos and 12 mos.; sutures came undone and a small linear cleft to the left of the uvula remains (3/4" long and 1/4" wide- not a fistula). Palate is very short and a pharyngeal flap recommended at 5-6 year of age. My question- Is it necessary to close the cleft now even if speech will remain hypernasal until the flap is done or can the cleft repair wait until the phar flap is done?

Dr. Carstens: The palate has 5 sets of muscles. Two go from the palate to other sites, ie the tongue and the pharynx. One pair is located in the uvula. These three sets are not very important for speech. The two sets which are key occupy most of the surface area of your daughter's palate. If she has a notch which is posterior it probably means that the bulk of the important musculature is now together. Do you know anything about the technique used to close the palate? in your daughter's case?

Melissa W: He used a double flap (one that he developed) not the reversing Z thing.

Dr. Carstens: The reason I ask is that her speech may develop quite nicely using the muscle she has

Melissa W: cut around the back of the teeth and down the center and then flapped it to the center. She is very hypernasal right now.

Dr. Carstens: Okay so she does have "velopharyngeal insufficiency" which means a gap between the palate (velum - sail in Latin) and the back of the throat?

Melissa W: Yes, she doesn't get closure, that was why I was wondering if closing the cleft would make that big of a difference or if we should wait on the pharyngeal flap?

Dr. Carstens: Given this there are several options down the road. One is to lengthen the soft palate with a Z plasty. The other two are a pharyngeal flap and a sphincter operation. Let me get more down to earth. If her palate can't be made longer (and this is always a good first step) she needs either a passive baffle between the palate and the pharynx OR she needs to have the circumference of her pharynx reduced. The first is a static "bridge" to block air flow. The second depends on the pharynx contracting actively so that air escape is reduced. The best way for the surgeon to decide between these options is to look at the palate from above with an endoscope and observe the closure patter. That is how we decide which option to do...provided the palate can't be simply lengthened first. Whew...I will stop did that make sense to you?

Melissa W: When can an endoscope be done? How soon after her last unsuccessful surgery can something be done?

Dr. Carstens: Tissues have their own time course to heal...at CHO we usually get into these procedures at around 4- 6 years of age. This allows for the palate to soften, grow and stretch. Every time we invade tissue (albeit for good purposes) we cause scarring.

Melissa W: When would a Z-plasty be done to attempt lengthening?

Dr. Carstens: I would personally favor letting her cranial base (and therefore her palate) grow more before going back in.

Melissa W: Ok, thank you very much for answering my question

Dr. Carstens: Was that too much detail?

Melissa W: No, that was fine.

Leigh: I think it was clear, if any one needs more clarity please IM me.

Joanne: Thank you, Dr. I do not have a question for you right now, nor does Leigh - Judy, do you?

Judy: Can speech exercises be taught, or would they be of value to a child who is one year old?

Dr. Carstens: There are realistic limits to what children can do at a given age...this is developmental. Some of it is language based. Italian kids can pronounce all the sounds in their beautiful language very early whereas it takes an English speaker up to 4-6 years to adequately say all the phonemes in our language. Probably the single best exercise your child will get is LISTENING to you and other family members speak.

Judy: I read in my e-mail about teaching them to use their lips, getting food into their mouths etc.

Dr. Carstens: Lots of stimulation is something that you can control. The very actions they learn in terms of tongue control with eating undoubtedly come into play in producing speech sounds.

Joanne: Thank you, Dr. Carstens. Melissa has a 2-part question for you. Melissa?

Melissa Q: What type of tip rhinoplasty do you prefer? My daughter is Bilat CLP with a very flat nose. Also, her upper lip seems to be attached close to her teeth. It is somewhat hard for her to bite into some things, like sandwiches or fruit etc.

Dr. Carstens: The effect of many cleft repairs is to tether the space between the lip and teeth -- this is called the sulcus. There are several options to improve tissue coverage in this area. The sulcus is very important to the orthodontist in the future. Regarding nasal reconstruction this is a topic that has probably 300 articles in the literature. I don't want to sound trite but each child is different and she should be analyzed by your PS in descriptive terms - what structures to fix and how they differ from the normal. The basics of the bilateral nasal problem are as follows:

1.  Provide an adequate columella - the soft tissue connecting the tip of the nose with the lip.
2. Bringing the alar cartilages inside the tip of the nose into alignment, sculpting them and adding cartilage as needed.
3. MOST DIFFICULT...to rearrange the geometry of the alae (the entrance into the nostrils and the nostril rims) so that the architecture is aesthetically normal in vertical height lateral displacement from the midline and the arc of the curve which the ala makes. I'll stop. No one technique can do everything.

Melissa Q: My PS has mentioned using ear cartilage.

Dr. Carstens: Ear cartilage is perfectly good for some problems

Melissa Q:   Thanks Dr. Carstens!

Joanne: Thank you for your response, Dr. Edyie, do you have a question for Dr. Carstens?

Edyie: Should I be concerned about the type of procedure my PS uses on my 4 and 1/2 month old son's unilateral CL repair to be done July 22nd. He also has a CP to be fixed around 18 months of age. I have heard of so many different procedures. Do you see one specific type as most successful?

Dr. Carstens: This question is a good one and will undoubtedly come up time and again. Each surgeon comes up with a variety of techniques that suit him/her best...the technique is SECONDARY to the determination of the surgeon to MAKE THAT TECHNIQUE WORK! This is really a matter of communication between you and your PS. Remember if there were one best way to do things...everyone would do it.

Joanne: Thanks for your response.  Annette has a question now for Dr. Carstens.

Annette: Hi, Dr. I feel as if I am totally in the dark. Is it unusual to really not know anything regarding my son's cleft? It seems as if the PS and pediatrician feel no need to expand on his condition.

Dr. Carstens: You have every right to know as much as possible and it is a mutual project for you and your PS to work toward that educational goal. This should be very enjoyable for you and your doctor.

Annette: He has just a cleft lip, but until Ct I didn't even know there were different types. His surgery is July 22 and I know nothing. Should I be concerned?

Dr. Carstens: You will get to know one another and the more you are up to speed, the easier it will be to communicate around difficult issues. I would recommend you contact your PS, get some literature. The American Society of Plastic Surgeons has several good color brochures about techniques ...most importantly make an appt with your doctor and discuss the issues--you'll both feel more at ease!

Annette: Is there other problems that could arise that I should ask about? He has pre-op on July 14.

Dr. Carstens: Cleft counseling for me takes about two 45 minute sessions with a 3rd or 4th visit before surgery if the parents want more detailed info.

Annette: I have only seen PS twice, briefly after delivery and one office visit.

Dr. Carstens: You should set these goals for yourself: (1) learn about the cleft anatomy...why does it happen and what structures are out of place - then you'll appreciate what the repair does. (2) Understand the drawbacks of the procedures your surgeon uses...every procedures has its pluses and minuses...Ask your PS how that short lip can be addressed in the future (as an example) (3) finally get a handle on the anesthesia and post op considerations - you will be your child's best nurse!

Joanne: Thank you, Dr.  I agree that communication between dr and parent is vital.

Dr. Carstens: Is this approach helpful?

Annette: Yes, thank you.

Joanne: Kristi now has a question for you, Dr.

Kristi: My question is - How do you deal with a lot of scar tissue that has built up over the years, especially in the palate area? My PS is considering a revision. But the amount of surgeries already done has him really 
concerned about success.

Dr. Carstens: Much of my work in Nicaragua consisted of secondary surgeries - taking down bad repairs and addressing issues left behind...each such case is totally unique. There is an iron fact in all this

Joanne: Tell him how many surgeries you have had, Kristi.

Kristi: I've probably had 25 reconstructive surgeries...

Dr. Carstens: Surgery has its limitations and there are sometimes situations in which the "law of diminishing returns" comes into play.

Kristi: Right

Dr. Carstens: As someone who has also had his share of surgeries I can sympathize with you. I wish I could see you to assess but it is impossible here. If you really have a good relationship with your PS you can deal with these issues in confidence. My own feeling about a patient is NEVER GIVE UP!

Kristi: Thanks :-)

Joanne: Thank you, Dr. Carstens. Kat has a question now for you.

Kat: Dr. Carstens, our son had both his lip and (soft) palate repaired at age 2 months. What's the worst that we could expect as a result of it being repaired too early? The palate, that is.

Dr. Carstens: The palate is a delicate organ with anatomy that should be precisely aligned. Children probably start making speech and learning about it from the day they are born. In theory the earlier the repair the better the speech but BEWARE...these kinds of generalizes are like the intellectual Ooblick...trapping every one. Who defines good
speech? How good is one child from another? IMPOSSIBLE to quantify. SO I think the best most accurate repair is in the child's best interest. I am more comfortable doing them later...even so I use 4.5X loupes. The bottom line for all palate repairs is will the darn thing work?

This is defined as: (1) Does it palate bounce up and down well? (2) Can it reach back and close off the pharynx? Can the child pronounce well...remember that many phonemes come from the lips and teeth the palate isn't the be all. So the worst that can happen is that the palate needs lengthening later and/or a pharyngeal flap or pharyngoplasty. I talked about these two operations earlier. Okay to stop?

Kat: Thank you, Dr. Carstens! :-)

Joanne: Thanks for that answer. Christine has another question for you now, Dr. Carstens.

Christina: Hi again, My next question is .. her tongue is still in her palate and doesn't come down very much. Will that be a problem when they go in to repair her palate? They are still planning to do this even though her jaw didn't come out as much as hoped. It is scheduled for Aug. 28. she will almost be 2 yrs. I am worried about how they will keep her tongue down. Is there other work that usually has to be done on the tongue to have it come down and out to a 'normal' length?

Dr. Carstens: Does your daughter has Pierre Robin?

Christina: Yes

Dr. Carstens: Okay, thinking simplistically...the position of the tongue in the oral cavity is due to (1) its size (2) the relationship it has with the bony structure to which it is attached -- the mandible and (3) the overall dimensions of the rest of the oral spa

Christina: Can anything be done to get the tongue to not be there so it won't be a problem when the palate is repaired?

Dr. Carstens: Does your child have also a "macroglossia?"

Christina: Haven't heard that before what is it?

Dr. Carstens: Some kids have big, fat tongues. This is usually seen in cases of Down's syndrome.

Christina: Her soft palate is the only thing that is open if that is open. Her tongue looked normal when she was sticking it out not big and fat.

Dr. Carstens: It is known that patients with tongue cancer can have 90% of the tongue removed and still preserve "intelligible" speech. It would not be fair to her to try prophylactically to reduce her tongue in anticipation of a problem that hasn't happened.

Christina: I was thinking of more along the lines of holding it down or lengthening it or something like that.

Dr. Carstens: Are your doctors worried?

Christina: Nothing has been said. You are here and thought I would ask. LOL

Joanne: Thank you, Dr. Carstens. Melissa has another question for you as well.

Melissa Q: Just wanted to clarify ~ so the short sulcus is intentional for future othro work?

Dr. Carstens: No, No, No. The orthodontists don't like what we do...we make it more difficult for them.

Melissa Q: But there isn't a way around it? Is it that she just doesn't have enough tissue to begin with?

Dr. Carstens: Plastic surgery is like Robin Hood...robbing the rich to give to the poor...it is always a trade-off. There are sites in the mouth which can donate tissue to the sulcus (isn't that right Joanne?) This is usually done as a secondary procedure. I think it is a very good goal to work on a concept of a repair which addresses this problem from the very start.

Joanne: Yes, on my son they did that.

Melissa Q: Ok- so it may be worked on later if needed.

Dr. Carstens: Yes...

Melissa Q: Thanks again!

Joanne: Annette has another question

Annette: The other families seem to have more serious clefts than Tyler, but they also seem to have other medical issues. With a Minor cleft lip are there other things his Drs. should be looking for. What are the chances of teeth being affected with just the cleft lip?

Dr. Carstens: Associated problems with other organ systems seem to cluster around kids with ISOLATED cleft palates. In answer to your question, the very fact of the cleft I think puts the chances of orthodontia higher. The most
important factor is if there is an associated cleft or groove of the alveolus (gum) because THEN the dental development is likely to be a problem. 

Annette: His PS says it is just the lip, nothing else is affected, but his gum seems to be higher on the affected side. Minor is the term everyone seems to call it because it is not the palate or anything else and that it could of been worse.

Dr. Carstens: One other thing, partial clefts are NOT minor in that they require a full-dress operation in order to get them right...in some ways they are more treacherous because the unwary surgeon thinks them to be easy! Okay, when he is a little older have a PEDIATRIC DENTIST see him and get some x rays on the veolus. You can then seen if all the roots are there.

Annette: What age? What's the veolus?

Dr. Carstens: When the baby teeth (deciduous teeth they will have roots) These become calcified and therefore visible on x-ray about the time of eruption. Check with your dentist. The alveolus is the term for the part of the maxilla 
(upper jaw) which houses the dental structures ie. the gum.

Annette: Thank you for all your help.

Joanne: Melissa W has another question now for you, Dr. Carstens.

Melissa W: My daughter has a very small nose and very small nasal passages. She was born without a nasal bridge and her nose will not grow (syndrome related)  could a pharyngeal flap cause breathing problems? She had a bridge constructed at 6 mos of age.

Dr. Carstens: Does she have Binder's Syndrome?

Melissa W: Robinow syndrome

Dr. Carstens: Do I have this right...she had a pharyngeal flap put it in at 6 months?

Melissa W: No, she had a nasal bridge built at 6 months, sorry.

Dr. Carstens: Don't exactly know what you mean by a nasal bridge BUT a lack

Melissa W: The part between your eyes that holds up your glasses.

Dr. Carstens: of tissue (ie a small nose) may be a manifestation of growth failure which might affect the maxilla in the future. Thus the nasal air passages could be small in the future. I don't think see where a pharyngeal flap comes in?

Melissa W: Could this make a pharyngeal flap dangerous in regard to breathing or sleep apnea? Because wouldn't a phar flap lessen the airway in the throat?

Dr. Carstens: Okay...I get your question. Sleep apnea in these types of cases may be due to a diminished volume of tissue...often this is dealt with later by advancing the maxilla and thus opening up the airway. Yes, theoretically a pharyngeal flap could cause problems.

Melissa W: Would another palate lengthening procedure be better for my daughter than a phar flap?

Dr. Carstens: If your child has VPI (velopharyngeal insufficiency) I defined this earlier...I think the

Melissa W: she does

Dr. Carstens: first consideration is the length and function of her palate THEN go after the other procedures--nasal endoscopy first.

Melissa W: OK, thank you very much Dr. Carstens.

Joanne: Thank you, Dr. Carstens. Edyie has another question for you at this time.

Edyie: Dr., I have heard that there are holes that can come up on a newly repaired lip, how can this be best avoided and what are the causes?

Dr. Carstens: Holes happen for a reason...no surgical repair is fool-proof. The only way to avoid complications in surgery is...NEVER OPERATE. Having said that, repairs can come apart post-op from sutures loosening, collection of blood (hematoma) or physical stress on repair (baby escapes from the no-no's and bashes the face). If the repair is sound and healing proceeds normally you won't get holes but you will be beset with all the intangibles of scar biology which will affect the final result. Is this helpful?

Edyie: Yes, I don't really understand the last part, though.

Dr. Carstens: The final result of the lip repair is a combination of things you don't see and things you do. What you don't see is the unification of the muscles, the dissection of the abnormally oriented structures back into normal position - yet these factors affect the overall result. What you do see on the outside is the height, bulk, contour of the lip and the scar that is the tell-tale sign that the surgeon was there. All these tissues have to heal. The scar will at first contract and later relax. The final resting position of your child's lip depends on how these tissues behave. These are factors known but to God. Is that clear?

Edyie: Thank you very much for being here! Yes, thank you, I understand clearly.

Joanne: Thank you for that response. Judy has another question for you now. After that we will take one more question from Debbie tonight.

Judy: My one yr. grandson has a tooth buried where his gum should be and one coming in the roof of his mouth, can these teeth be used for permanent teeth. sorry about wording.

Dr. Carstens: Abnormal patterns of dental eruption (ectopic eruption) are common in children but especially in cleft kids. Have him seen by your PEDIATRIC DENTIST. The answer is that above the baby teeth there is a hidden full complement of adult teeth which will erupt on their own timetable. The baby teeth are smaller and their roots are resorbed as the adult ones come in. Baby teeth cannot be used as implants in the future.

Joanne: Thank you, Dr. Carstens. Debbie has our last question for this evening.

Debbi: My son is 6 mos. post lip repair and has dark red capillaries visible around his scar...are these likely to fade?

Dr. Carstens: I'd talk with your PS about this. New evidence shows that silicone sheeting applied to scars helps out. The "neo-vascularization" the capillaries could be treated with laser in the future.

Debbi: Thank you, Doctor.

Joanne: We want to thank you, Dr. Carstens, for sharing your valuable time with us tonight. You have answered a lot of our questions for us.

Christina: Thank you Dr. Carstens.
Melissa W: Thank you very much Dr. Carstens.
Judy: You don't know how much this means to all of us.
Kat: Yes, thank you Dr. Carstens!
Joanne: Several of our parents had to leave, but they asked me to convey their thanks to you.

Dr. Carstens: Thank you all for your very good questions. If this is a good thing to do I will be happy to continue and promise to get the hang of it later.

Annette: Thank you Dr. Carstens, God bless you, for doing this.

Kristi: Thank you Dr. Carstens :-)

Joanne: Do we know the date of our next Q & A chat???
Leigh:July 30th
Dr. Carstens: Buenas noches a todas. I shall have to set that with 
Joanne