Author: The Cleft Dentist

My Dental Implant Surgery!

My Dental Implant Surgery!

It’s done!

I had 2 dental implants placed yesterday, Wednesday, March 28th. My bone graft surgery was on November 22, 2017. 4-6 months is a good amount of time to have dental implants placed after a block graft in order to prevent the bone from disintegrating. Remember, the only reason bone is there is to support teeth. Dental implants act like the root of a tooth, so if a dental implant is there, it will stabilize the bone and give the reason for the bone to be there!

The implants I had placed were of the Straumann brand. I like this brand the most because I like the surface of the implants, and the components of the implant are easier to work with. But really, any brand is doable.

The day of:

My surgery was scheduled for 12 PM, so I arrived at the surgery center at 11 AM. I was brought back into the pre-op area where I met with the anesthesiologist and nurses.  I had not eaten anything yet that day, so I was so hungry!

Before the surgery

 

I was so nervous….

Even after all of the surgeries and knowing a 3D x-ray had been taken, so there was definitely bone in there, I was STILL nervous. So…reminder to you: It is totally normal to be nervous. And also, the older you get, you will feel more calm because you know what’s coming, but you’ll also feel nervous because you know what’s coming. Just make sure you have someone with you who can tell you jokes and keep your mind distracted, just like my husband did. It helped so much.  And it doesn’t hurt to make sure you have your meal planned for when you leave the hospital…it gives you something to look forward to.

I was sedated…

I chose to be sedated for this surgery instead of doing general anesthesia. This is because a dental implant surgery is not very serious, and sedation is easier on the stomach and recovery aspect. Dental implants can even be placed with just local anesthesia (like a shot you get at the dentist for a filling), but I wanted to not be aware of what was going on so my nerves could be down.

This involves just an IV, and medication is inserted through the IV, and before you know it, you are sedated and unaware of what is going on. When I woke up, the first thing I asked was,

“Are they in?”

And thankfully, I received a laugh and a yes! I was so happy. I felt a little groggy waking up, but it honestly just felt like I was waking up from a long sleep. It took about 15 minutes for me to be fully alert. My lip was very numb still, and I had some pain at the surgical site. I was given pain medication, some water, and I changed into my clothes, which always feels good! Within an hour, I was discharged and feeling pretty normal. My lip was numb for about 1.5 hours after the surgery, so I had to be careful with eating anything to avoid biting my lip!

Implants- picture taken an hour after surgery

After leaving the hospital with my husband, we went straight to Pressed Juicery for a healthy ice cream . This has become a tradition for my family to always get ice cream or a milkshake to eat with a spoon on the way home from the hospital.

I will be sharing a “What I Ate” post so you can see how creative you can actually get with soft foods!!

For now, let’s talk about some things that are normal and things that aren’t, so you know what to look out for.

Instructions:

  1. No straws for 1 week after surgery
  2. Only SOFT foods allowed for 1 week
  3. For 24 hours: no driving, alcohol, bending over, sudden movements
  4. No strenuous activity- only walking for 1 week and then can add small activities like yoga after 1 week. Activity can resume after 2 weeks
  5. Keep surgical area elevated to avoid swelling
  6. No direct pressure on surgical area
  7. No hot foods for 1 week
  8. Brush your teeth still!!! Just be careful around surgical area
  9. Use Peridex (chlorhexidine) prescribed by your doctor two times a day, and no eating or drinking for a half hour after swishing
    • Make sure you really do use the chlorhexidine as indicated because it is ESSENTIAL to helping repair tissues
  10. No aggressive spitting for 1 week
  11. You can shower today! Do it! It will make you feel better

What is normal:

  1. Some blood coming from the surgical area
  2. Some swelling in the surgical area
  3. Slight pain in the surgical area
  4. Feeling tired or exhausted the day of surgery and the day following surgery
  5. Some nausea the day of surgery
  6. You might see some screws in your mouth where the implants were placed. This is COMPLETELY normal. If you don’t see them the next day after surgery, don’t freak out! Your tissue might be healing over them. That is okay!

What is not normal:

  1. Difficulty breathing, headache, vision issues
  2. Persistent dizziness
  3. Persistent nausea or vomiting
  4. Pain that does not go away after a few days, pus coming from the surgical area (green, yellow)
  5. Temperature greater than 101.5

Look out for my “What I Ate” post. It’s very important to maintain a healthy diet while healing, and make sure you’re not just eating sugary foods. A well-balanced diet will help the healing process!

Thank you all for your support and well wishes for my surgery. It did go well, and I will continue to update you on this post as I heal!

Bone Grafts in Cleft Patients

Bone Grafts in Cleft Patients

The most important part of cleft treatment

In my opinion, the secondary alveolar bone graft is the most important aspect of treatment for the cleft patient.

The bone graft closes the final communication between the nose and mouth, and it helps to stabilize the jawbone. Having an interruption in the jawbone, due to the cleft, can cause lack of stability and collapse of the arch. The teeth next to the area lacking bone will begin to migrate and tilt toward that area. Think of it like completing a circle. Having a cleft makes for a break in the circle, and the bone graft fills in the last portion of the circle and stabilizes everything .

When should this treatment be done?

This treatment should be done around the ages of 8 to 10. The reason for this timing is because we want to complete this treatment prior to eruption of the canine, which is next to the cleft area. Again, this helps to create arch stability before eruption of permanent canine teeth next to the cleft.

Where does the bone come from?

The bone is usually taken from the hip. This is called an autograft because it is a graft that is taken from your own bone. An autograft is considered standard of care because there is less risk for transmission of disease and should be accepted better since it comes from the patient instead of an outside source. The only down side is that you can experience pain for a bit while the donor site is healing .

Another option would be allograft bone, meaning it comes from a bone bank that collects cadaver bone. The bone is cleaned and disinfected through many processes, but there is always the slight chance of disease transmission. Also, this type of bone does not have all of the cells that are present in autografts to encourage bone growth .

What can go wrong?¹

  1. Sutures can come undone, exposing the bone graft
    • once the bone graft is exposed, the part of the bone that is exposed is now dead and will come out either as one piece or in tiny pieces
  2. Eruption of the canine within the bone graft
  3. Infection of the graft site
  4. Harm to teeth next to bone graft site
  5. Complete failure of the bone graft, leading to communication between nose and mouth

It is, unfortunately, not uncommon for these grafts to fail. The surgeon is essentially placing bone into a hole that is not supported by structures around it. Also, there is a lack of blood supply to these regions because of scar tissue. Scar tissue is the result of the surgeries done to repair the cleft defect.

What happens if it does fail?

Don’t lose hope! When you read my story below, you will feel better about this. There are so many options that you can do in case of failure. And thanks to prosthodontists, they can be some pretty great options. Ready? Let’s go!

  1. Try again
    • This is what most people do who have a failure. Yes, it stinks, but why not keep trying?
  2. If you are an adult, and you really don’t want to try anymore, an obturator is a great option
    • Obturators will replace the missing teeth AND cover the hole where the communication exists
  3. Complete orthodontic treatment, and try again
    • This would mean the next attempt would be in the early to mid- teenage years
  4. Leave the defect as is, and replace missing teeth with a bridge or removable partial denture

And what if it succeeds?

I like the way you think!

  1. Proceed with all of the steps outlined in Timeline of Events
  2. Replace missing teeth once orthodontic treatment is completed

My story

I had an iliac crest graft in 1998, which failed. An iliac crest graft involves bone being taken from the hip. I remember feeling tiny granules of bone in my mouth as the stitches had opened up. I had another iliac crest graft in 2002, which also failed. I continued with my orthodontic treatment and proceeded to have the final surgeries involved with clefts, including nose and lip revisions.

Finally, in 2009, my last bone graft was successful, meaning an adequate volume of bone remained in place, but it was not taken from my hip. It had been cadaver bone and was covered by a metal mesh material to protect it and hold it in place. I had been freaking out the week after the surgery, so afraid it was going to fail like the others did. I remember going to my surgeon’s office almost every day (my poor mother), just so he could make sure it looked good. He looked right at me and said,

“It’s not going to fail”

That was all I needed. I didn’t go back until I actually had a follow-up scheduled, and the bone graft had been successful. Never underestimate the power of positive thinking. I swear it works!

About 5 months later, I had 2 dental implants placed where the bone graft had been. It had been planned, as explained in my Dental Implants post, so the implants were placed exactly where they needed to go. 

However, there was a slight complication. I could not wear my retainers made by my orthodontist while I was healing because they would not fit over the newly built up gingiva. I did not know what to do, but everyone said the most important thing was to have the bone graft heal. Ultimately, my teeth had moved and shifted because of not wearing the retainers. I had to undergo orthodontics again once I was done healing from the bone graft.

This is very important!!!

Please do not make the same mistake I did. Please make sure you go to a prosthodontist during the process so that the prosthodontist can figure these things out FOR you. Having someone like a prosthodontist on my team would have helped with maintaining the teeth in their positions and also giving me something to wear while healing to replace my missing teeth.

3 months later, I had my implants restored with crowns, and I had never been happier in my life.

This sounds like a pretty good ending!

Unfortunately, it didn’t end there. For 10 years, it was great. My confidence had soared, I made amazing friends, and I met the most wonderful man who is now my husband. You can read about what happened to my implants HERE. Long story short, I developed an aggressive infection, and they were failing.

In November 2017, I agreed to have another surgery…. 10 years after I thought I was done for good. I found an oral surgeon at UCLA who specializes in craniofacial patients, and he is also a plastic surgeon. Amazing!! He removed my implants and did a bone graft, taken from my hip, under general anesthesia. I was swollen and in a fair amount of pain for about 3 days.

After a week, the swelling had gone down, and my hip pain was almost gone.

However, a new problem came up at my 3 week follow-up. The sutures had loosened, and the bone graft was exposed. I kept the area very clean and rinsed with chlorhexidine 3 times a day. Chlorhexidine is controversial because while it does keep the area very clean, it also prevents tissue from growing. My surgeon had warned me that either a large amount of bone is going to come out or just the outside layer of bone will loosen after some time. I couldn’t handle this. More bad news, more complications, the possibility of more surgery. I had follow-ups every 2 weeks, and nothing was changing, which was actually a good sign. But I wanted something to happen so we could move on to the next step.

 

 

 

 

1 month post-op

Finally, I stopped using chlorhexidine, and the tissue began to grow over the bone. It continued to grow.

2 months post-op

 

At my 3 month follow-up, a tiny sliver of bone was loose, and there was beautiful tissue underneath. This was the best situation we could have asked for!

3 months post-op

 

I had a CBCT taken, and a guide was made for proper placement of the implants. My husband, who is also a prosthodontist, planned the implants and designed the surgical guide. He also made retainers for me and a flipper for me to wear during healing.

What’s next?

On Wednesday, March 28th, I’m having 2 new dental implants placed. I’m SO nervous that when the surgeon sees the bone, it won’t be good enough for the implants.  But, I have to remember, positive thinking goes a long way!

I’m going to update you about everything so you’ll understand the ins and outs of dental implant surgery. Here we go! Wish me luck.

¹G. De Riu, V. Lai, M. Congiu, A. Tullio. Secondary bone grafting of alveolar cleft. Minerva Stomatol. 2004 Oct; 53(10): 571–579.
Dental Implants in the Cleft Patient

Dental Implants in the Cleft Patient

As mentioned in my Timeline of Events post, dental implants can be a great treatment option when cleft patients are finished with the necessary surgeries and are ready to replace missing teeth.

So you want to be able to smile?

While there are many options for replacement of missing teeth, dental implants are popular because they feel the most like natural teeth. You can floss around them, they are lone standing (not connected to other teeth), and the best part is the other teeth in the mouth remain untouched.

Some qualifications do need to be met first before proceeding with dental implants:

  1. Meet with a prosthodontist to evaluate how the teeth come together and if there is enough space between the teeth for implants
  2. Adequate bone density and volume remains after bone graft procedure
  3. Skeletal growth is complete
  4. Good oral hygiene
  5. No other serious medical conditions that could affect implant success

What are dental implants?

A dental implant is like a replacement of the root of a tooth. Dental implants are integrated into the jawbone and are not visible from the outside of the mouth once they are placed. They are made of titanium, which is a biocompatible material, meaning it is not rejected by the body.

Will dental implants ruin my bone?

No. Dental implants, just like teeth, actually preserve the bone. You can think of it as: implants and teeth give bone a reason to be there! Dental implants stabilize bone, unless of course, an infection occurs.

What makes up the dental implant parts?

The part that goes into the bone is the actual implant. After placement of the implant, a little cap will be screwed into the top of the implant to prevent any debris, soft tissue, or bone from getting in there during healing. This is called either a cover screw or a healing abutment.

After healing is complete (about 3 months), the cap can be removed, and an abutment can be placed. This acts as the structure to support a crown.

The crown is then what looks like a tooth and goes on top of the abutment.

Why do I need to see a prosthodontist?

The prosthodontist will evaluate your bite and also the size of the space of the missing teeth. Measurements will be done , and the prosthodontist will do a mock up in wax of how the teeth would look ideally when they are finished. Using this as a guide, a template will be made using a CBCT (3D x-ray) and the model to guide where the implants should go in order to achieve the ideal location of the teeth . The best thing a prosthodontist does is PLAN! It is very important to allow a prosthodontist to plan the location of the implants to have a worry-free implant surgery.

Plus, I’m a prosthodontist, so don’t you want to come see me??

What happened to me

I will discuss the bone graft aspect more in tomorrow’s post, but I did have 2 iliac crest grafts (bone taken from the hip) that failed when I was young. In 2009, I had a successful bone graft that was actually cadaver bone and not taken from my hip. A successful bone graft in this situation meant there was enough volume and density for implant placement. Also, no bone had been lost after the graft.

About 5 months later, I had a CBCT taken, and a guide was made to best place the implants exactly where they needed to go. I had 2 dental implants placed where I was missing teeth #7 and 8. In non-dental terms, due to my cleft, I was missing my right central tooth and the tooth to the right of that one. Two months after dental implant placement, an impression was made, and the implants were then restored and finished with the crowns.

The 2 front teeth on my right are dental implants

I LOVED having dental implants. I had never felt more “normal.” I was able to floss between them, bite into an apple for the first time ever, and I was smiling more than ever before. I took an x-ray every year to make sure all looked well. I never had any issues…until 2017.

I started to notice more food getting caught  in my implants, and when I would wake up in the morning, there would be dried up mucous on the top of the crowns where the implants were. I started to freak out. This was my biggest nightmare. All I was thinking was: ANOTHER SURGERY??? I can’t do this. I can’t do this again.

You can see the drastic difference around the implants between the 1st & 2nd x-rays

I had an x-ray taken, and my fears had been confirmed. I was rapidly losing bone around the implants. In the x-ray, it was also obvious that there was a communication between my nose and mouth, and the only things “plugging” up the hole were my implants. Needless to say, I was flipping out. I had not neglected caring for my implants, and I had just had an x-ray taken 5 months prior, and the bone looked fine. I had an aggressive infection, and there were 3 options at this point:

1) Remove the implants and have another bone graft

2) Leave the implants alone and wait for them to fully fail

3) Remove the implants and do a small bone graft just to close the communication

  • In this scenario, I would have to look into my other options for replacement of my missing teeth

Because I naturally just go hard at life, I chose option #1 . I had agreed to a 4th bone grafting surgery 10 years after I had thought I was done with my cleft surgeries for good. Not to mention, I had finally finished school and was so ready to just relax and enjoy life a little bit. Then this hit me. I was so upset, and I know a lot of cleft patients would feel the exact same way.

“You have to remember this is not something that is life-threatening. It’s something that can be fixed.”

I still remember my dad saying that to me when I called him crying in the car after my appointment with the oral surgeon. This is something that is so important to realize. Through all of these hard and difficult operations, I still CAN enjoy life. The fact that I do or do not have teeth does not define me. My dad saying this still resonates with me as I’m healing from the surgery. It really has helped me get through the difficult recovery and the complications I encountered.

Stay tuned for tomorrow’s post to see what happened next because unfortunately, the story is not over quite yet…

 

Speech & Dental Case Report

Speech & Dental Case Report

I received a request…

This post is for a special fan of the site, and she made the request for this topic to be addressed last week. So if you have a special request for a topic, please fill out the form at the bottom of the page, or click on the tab at the top of the page.

Let’s talk Speech: 

Patients who are born with only cleft lip will have little to no struggle with speech. They will mostly only have the same challenges  as those without a cleft lip.

The palate has 2 components- the hard palate, which is toward the front, and the soft palate, which is toward the back. A cleft palate means the palate is open into the nasal cavity, and when the opening is not closed properly, speech can be hypernasal .  This can be corrected with surgery, but it still affects speech for cleft babies. The other reason for speech delay is because the middle ear is affected in cleft patients, so this can cause a speech delay since children learn to speak by hearing sounds they make. Therefore, an audiologist and a speech therapist are very important for speech development .

So this post goes out to patients with cleft palates

As you know from my Timeline of Events post, speech evaluation and therapy should begin around 18 months of age.

However, evaluation can even begin at birth to look at:

  • mental development
  • motor development
  • hearing
  • relationship between mother & baby
  • how to use toys and how to speak to a baby
  • ALSO>>> the speech therapist can offer advice to the parents regarding a nurturing environment 

An important note to consider…

There remains controversy over whether the hard palate (more toward the front of the mouth) should be repaired early (at 12 months) or late (at 36 months). The benefit of late hard palate closure is undisturbed facial growth for the baby. However, in a study comparing patients with early and late hard palate closure, the patients with early closure performed significantly better with speech than those with late closure.² 

Speech therapy

Begins once a month after the palatoplasty (cleft palate repair).¹

What the speech therapist is looking at here: 

  • swallowing
  • hearing
  • articulation development

If issues continue by the age of 4: 

  • the frequency of speech therapy will increase to once a week
  • here, it is important to further evaluate the soft palate (back of the top of the mouth) because there may have been complications with its closure
    • further surgeries may need to be considered at this point to adjust the closure of the palate

When to see the dentist:

One goal of palatal closure is to make sure the jaws and teeth grow into the right places.

A key for successful speech development and cleft treatment is to see a Craniofacial Orthodontist around 12 months of age. Orthodontists assess facial development as part of their treatment, so seeing one early enough can help determine any future surgeries that may be needed. Also, the orthodontist can consult with the speech therapist about facial development and how it is affecting the patient’s speech. 

Another benefit of seeing a craniofacial orthodontist early is that as soon as teeth start coming in, the doctor can start aligning the teeth correctly. Establishing a dental home early in treatment is extremely important. The orthodontist and the surgeon will work closely together to make sure the jaws are aligned properly, which will help tremendously with speech. 

As shown in my Timeline of Events post, an alveolar bone graft occurs around age 10. This will also help the permanent teeth develop into the proper places and serve as stability for the gums. 

A maxillofacial prosthodontist for speech later in life…

When speech issues are still prevalent for the adult cleft palate patient, even after palatal repair, there is still another option. 

Maxillofacial prosthodontists can make a speech bulb, which sometimes is the only option for improving speech after further surgical interventions have not been successful. The use of a speech bulb involves some preparations on teeth to help hold the speech bulb in place. It is removable, with an extension on the back of the prosthesis to aid in closing the back of the palate. Also, if there has been no cleft palate closure, due to any reason, the speech bulb can close the communication between the nose and the mouth.³ 

 

My story:

I like to share my personal experience with these topics so you can get to know me better, and also so you can ask me questions about my personal journey if you’d like. 

This part for me is not as exciting because I was part of the group of cleft palate babies that had late palatal closure of the hard palate at the age of 4. I did have an obturator up until that time. I took speech lessons until I was about 6 years old. I don’t remember much about my speech therapy because it was so early in life, but I do remember it being very casual and not traumatic at all. Speech was always something I struggled with, especially with “r”  and “s” sounds, but my doctors said it sounded very good for a cleft palate patient. I do not wear a speech bulb now either, so my closure was adequate. 

My obturators from before my palatal closure

Since my personal history on this one was not as involved, I’ll share with you a case I did during my residency of a 16-year-old girl requiring a speech bulb. 

Case report:

The history of this patient: She was born with a unilateral cleft lip + palate. She had undergone palatal closure, orthodontics, bone grafts, and nose repair previously. To replace her missing teeth, she had a fixed bridge.

Her speech still sounded hypernasal, regardless of the surgical procedures, so a speech bulb was indicated. Treatment was done in the following sequence:

  1. Upper & lower impressions were made
  2. Teeth were evaluated on the cast for areas to wrap a clasp in order to hold the prosthesis in place
  3. Since there were no areas to engage a clasp, dental material, called composite, needed to be added to the molars (this is painless and does not require any anesthesia)
  4. New upper impression was made after addition of composite
  5. Clasps were bent to go around teeth and underneath composite that was added
  6.  Extension was added to reach the back of the mouth
  7. Acrylic was mixed and formed on cast
  8. Acrylic was trimmed and polished
  9. The patient came in and acrylic was adjusted as necessary
  10. Wax was added to the metal extension to simulate a bulb, and the correct size was obtained based on trial & error with the wax
  11. Once the final form of the wax was created, it was converted into acrylic
  12. Every 2 weeks, the patient would come back in, and wax would be added and then converted, if necessary

The purpose of the speech bulb is that it helps to close off any remaining space due to insufficient muscle from the cleft. By closing the space, speech is improved and does not sound hypernasal.

Please see photos below! And please feel free to post comments on this post. Thank you! 

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¹Willadsen, E. , Boers, M. , Schöps, A. , Kisling‐Møller, M. , Nielsen, J. B., Jørgensen, L. D., Andersen, M. , Bolund, S. and Andersen, H. S. (2018), Influence of timing of delayed hard palate closure on articulation skills in 3‐year‐old Danish children with unilateral cleft lip and palate. International Journal of Language & Communication Disorders, 53: 130-143. 

²OGATA, Y. The Speech Therapy of Cleft Palate Patients as an Oral Rehabilitation. Journal of Dentistry Indonesia, North America, 4, Oct. 2015. Available at: <http://www.jdentistry.ui.ac.id/index.php/JDI/article/view/758/658>. Date accessed: 20 Mar. 2018. 

³Mohammed M. (2006). Prosthetic Speech Appliances for Patients with Cleft Palate. In: Berkowitz S. (eds) Cleft Lip and Palate. Springer, Berlin, Heidelberg.

 

 

Psychosocial Factors

Psychosocial Factors

Our noses and mouths are involved in so much more than we think

Cleft lip + palate not only affects how we look, but it also affects function.

Where?

Eating, breathing, hearing, speaking, the list goes on.

Considering these are things we do every day, and some of them are necessary for survival, the life of a cleft lip + palate patient can get complicated.

And unfortunately, experiencing these issues can lead to tremendous psychosocial issues for a child and even adults.

Since much of a cleft lip + palate patient’s life is focused on mending the physical issues, psychological issues tend to be neglected. In my opinion, treatment should only be considered a success if the patient is physically and psychologically strong.

Not only are the surgeries confusing and a lot for a child to endure but also the social effects from being seen as different at school and at home are difficult for children to go through.

Studies have shown that even though cleft lip + palate does not have a major psychological impact as the child becomes an adult, the child still has psychological issues including behavioral issues, dissatisfaction with facial appearance, and symptoms of anxiety and depression.¹

Negative responses from outsiders regarding appearance or speech can adversely affect self-image. Issues with the nose and teeth are specifically the areas of concern when it comes to body image for these patients.²

In a study by Khargekar et al.³ that evaluated the psychological factors associated with cleft lip + palate patients, it was found that:

  1. Most patients are aware of the problem after 6 years of age.
  2. Patients felt they are specially treated by parents when compared to siblings.
  3. Patients are teased by siblings.
  4. Parents of patients with clefts are more tolerant of misbehavior in their child.
  5. Being teased in school and having difficulty in communication hindered social interactions>>this resulted in cleft patients not being comfortable with new people, having a loss of confidence in job interviews, and difficulties in marriage due to lower self-esteem.
  6. Patients are not satisfied with the treatment outcome.
  7. Unrealistic expectations from surgery result in dissatisfied patients.

It is no surprise that attractive people are seen as brighter, having more positive social behavior, and receive more positive treatment than their less attractive counterparts.⁴ It was even proven in a study! In some ways, it is not even the fault of the observer…I was taught in an art class I took in college that the human eye needs to see a certain level of facial symmetry, and if one thing is just a little bit off, we, as humans, do a double-take and may consider the asymmetry as unattractive. For most cleft lip + palate patients, symmetry is just not something we can ever attain.

And the worst part is…

We know we aren’t symmetrical. We know people will do double-takes. And that is hard. That makes us want to put our heads down. That makes us want to make sure we are smiling all the time in an effort to not draw attention to the scars on our faces. That makes us scared to talk in front of a large group of people. And that makes it hard for us to make friends.

What can be done to help?

  1. Social workers need to be part of the craniofacial team.

      • It is never too early for the patient to speak to someone about how he or she is feeling and about any difficulties, psychologically, the patient is going through.

     

  2. Continued speech therapy is an integral part of treatment for the cleft patient.

      • It seems as though many patients undergo early speech therapy but do not continue while getting older. Continued speech therapy and secondary speech evaluations are very important and can help build the patient’s self-image and self-confidence.

     

  3. Positive reinforcement from parents is essential.

      • I cannot emphasize enough how important it is for parents to constantly remind their children they are smart before they are beautiful. Intelligence, bravery, and accomplishments should be portrayed as more important qualities rather than drawing attention to physical characteristics.

     

  4. Realistic expectations from surgeries need to be discussed.¹

    • Many patients are given the assumption that the surgeries will correct any physical malformations they have. As a result, too much emphasis is placed on these surgeries, and unrealistic expectations are a result. Doctors need to make sure patients understand what the outcomes of the surgeries will be.

My experience

My earliest memory of feeling different is from 1st grade, when I had a nose surgery, and I went to school with bandages on my face. I remember my teacher giving me special attention and letting me sit on her lap during story time. While this was a nice gesture, I have since taken the idea with me that I can get things in life by letting people feel sorry for me. My parents have even admitted to me that they give me special treatment because of what I have been through. At the time, it was nice to know I was being treated special, but I wish I was just treated like everyone else.

The most common comment I’ve heard from people towards me is that I look sad when I’m not smiling, and people are constantly asking me if I’m upset about something. That is one of the most frustrating things for me because at rest, my face just looks different because it’s asymmetrical. People view that as sad. I find myself feeling the pressure from other people to constantly be smiling just so it doesn’t draw attention to the differences in my face.

I’ve also been bullied my whole life for the asymmetry in my nose and the way my voice sounds. These experiences have seriously affected my life. I didn’t have any true friends until high school, and I still struggle making friends today. Every time I see a picture of myself, I first look at my nose, and I hate photos that are taken straight on. I also despise hearing my voice in a video recording, and I lack self-confidence on the phone.

I’m now 29 years old and remember vividly all the times I have been made fun of. These experiences stay with us as adults and shape us into the people we become.

It does get better, but it is impossible to forget my past.

It is so important to follow the guidelines listed above that stem from my personal experiences. I hope I can help other children understand that their minds will always be more important than their physical qualities, and I hope they can gain a positive self-image in that way.

The support from my family and friends has meant more to me than they could ever imagine. They make me feel like it’s okay to be me, regardless of what I look like or sound like.

 

¹Hunt, Orlagh & Burden, Donald & Hepper, Peter & Johnston, Chris 2005. The psychosocial effects of cleft lip and palate: A systematic review. European journal of orthodontics 27. 274-85
²Tyl J, Dytrych Z, Helclová H, Scüller V, Matĕjcĕk Z, Beránková A 1990. Psychic and social stress of children with cleft lip and palate. Ceskoslovenska Pediatrie 45: 532–536 
³Nitin Khargekar, Naveen Khargekar, Vandana Khargekar, Surabhi Rajan 2016. Cleft Lip and Palate- A Psychology Insight. Science Journal of Clinical Medicine. Special Issue: Clinical Conspectus on Cleft Deformities. 5(4-1):37-40
⁴Dion, K., Berscheid, E., & Walster, E. 1972. What is beautiful is good. Journal of Personality and Social Psychology. 24(3):285-290.

 

Environmental Factors

Environmental Factors

If cleft lip & palate does not run in my family, where is it coming from?

Non-syndromic cleft lip & palate does not always depend on genetics. 

The cause could be ENVIRONMENTAL .

What does this mean?

When the baby is born with an isolated cleft lip + palate (non-syndromic), the environment, rather than the baby’s actual genes could played a role. There may have been trauma or some disturbance in the womb during the time when the palate and lip develop in the fetus .

Just to name a few: smoking, alcohol, diet quality, folic acid, exposure to chemicals, and parental age could increase the risk of cleft lip + palate.  Often, the cause is a blend of genetic and environmental factors, but here, I want to focus on environmental factors because these are potentially things we can CONTROL.

Craniofacial development is the result of a number of signaling pathways and is extremely complex. If this is interrupted for any reason, there can be a failure of fusion of the facial structures

When does this happen?

This occurs between the 6th and 8th week of pregnancy .

OK, how does this happen?

  1. Smoking¹
    • Mothers who smoke more than 25 cigarettes a day double the risk of having a child with cleft lip + palate
      • This is especially the case when mothers smoke during the first trimester of pregnancy (when the facial structures are developing)
    • Exposure to smoking does not affect the chances of having a child with cleft lip + palate
  2. Alcohol consumption²
    • Mothers who consume alcohol at high levels (more than 5 drinks at a time) during the first trimester of pregnancy increase the risk of having a child with cleft lip + palate 
  3. Age³
    • Mothers over the age of 40 increase the risk of having a child with cleft lip + palate
    • Mothers between the ages of 30 and 39 increase the risk of having a child with cleft palate, only
    • This could be due to the fact that mothers who are older have been around environmental toxins longer than a mother who is younger
  4. Diet⁴
    • Deficiencies in folate, niacin, thiamin, vitamins B6 and B12, riboflavin, zinc, amino acids, and carbohydrate are linked to cleft lip + palate
      • This is especially true during the time of conception and the year leading up to pregnancy
  5. Chemicals 
    • Women exposed to solvents like paints, varnishes, dyes, gasoline, cosmetics increase the risk of having a child with cleft lip + palate⁵ 
      • Women working as laboratory technicians, beauticians, hairdressers, and cleaners are especially prone to exposure to these chemicals
    • There is limited evidence regarding effect of pesticides and herbicides, but it has been found that:
      • Men working with pesticides increase the chance of having a child with cleft lip + palate⁶

How it can be prevented:

  1. Avoid smoking and alcohol during pregnancy, especially during the first trimester.
  2. Be aware that pregnancies later in life could potentially increase your risk of having a child with cleft lip + palate.
  3. Have a full, complete, nutritional diet with plenty of proteins, healthy fats, and carbohydrates. Folic acid supplements are especially beneficial.
  4. Avoid exposure to solvents, especially during the first trimester.

My story:

I have one older sister, Kristen, and she is 5 years older than me because my mother had 3 miscarriages after Kristen was born . When my parents found out they were pregnant after the 3 miscarriages, they were ecstatic! The doctor had said they were going to have triplets, but at the 8-week mark, the ultrasound had shown 2 non-viable sacs and 1 sac with a beating heart (that’s me!)

My parents did not know I would be born with a cleft lip + palate, but it is assumed that due to the loss of the other embryos, there was a disturbance in my mom’s womb, causing an issue with the fusion of my facial structures. 

Of course, this is an example of an environmental factor where the issue could not be controlled. So it is important to realize these things can definitely be beyond our power, whether we try to prevent these things from happening or not. 

I think it is so important to control what we can and realize that all we can do is try our best!

¹Honein MA, Rasmussen SA, Reefhuis J, Romitti PA, Lammer EJ, Sun L, et al. Maternal smoking and environmental tobacco smoke exposure and the risk of orofacial clefts. Epidemiology 2007;18:226-33.
²Boyles AL, DeRoo LA, Lie RT, Taylor JA, Jugessur A, Murray JC, et al. Maternal alcohol consumption, alcohol metabolism genes, and the risk of oral clefts: A population-based case-control study in Norway, 1996-2001. Am J Epidemiol 2010;172:924-31. 
³Herkrath AP, Herkrath FJ, Rebelo MA, Vettore MV. Parental age as a risk factor for non-syndromic oral clefts: A meta-analysis.Cleft lip and palate: Volpato, et al.J Dent 2012;40:3-14. 
⁴Krapels IP, van Rooij IA, Ocké MC, West CE, van der Horst CM, Steegers-Theunissen RP. Maternal nutritional status and the risk for orofacial cleft offspring in humans. J Nutr 2004;134:3106-13. 
⁵Garlantézec R, Monfort C, Rouget F, Cordier S. Maternal occupational exposure to solvents and congenital malformations: A prospective study in the general population. Occup Environ Med 2009;66:456-63. 
⁶Shaw GM, Wasserman CR, O’Malley CD, Nelson V, Jackson RJ.Volpato, et al. Cleft lip and palate: Maternal pesticide exposure from multiple sources andselected congenital anomalies. Epidemiology 1999;10:60-6. 
Healthy Recipe for Healing

Healthy Recipe for Healing

Sick of ice cream & smoothies while healing?

I know the feeling! While getting a quick milkshake and eating it with the spoon was always an after-surgery must-have for me, it got old real quick. And so did eating marinara sauce straight out of the jar to avoid pulling stitches or damaging any work that was done during my operation.

My mom would make me lots of soup  that was mostly broth to avoid ruining any intraoral sutures. I also remember feeling super creative when I mixed ricotta cheese with marinara sauce and ate that all day long .

I recently had an unexpected surgery in relation to my cleft (we will dive into that topic later on ), and I knew this time had to be different with food, or I would go crazy. I found and created many recipes during my healing, and I am so excited to share them with you. For now, here is my favorite.* My husband and I went NUTS over this one for how easy it was. When we were feeling extra lazy, we would make it in the crockpot after roasting the red pepper .

Creamy Roasted Red Pepper Tomato Soup

Sometimes, you just need comfort food in your life. But comfort doesn’t have to mean unhealthy. Such is the case with this healthy yet insanely creamy red pepper tomato soup!

If you have 30 minutes, you can make this simple, nutrient-rich soup that’s perfect for chillier days or when you just need a comforting bowl of soup. Or if you made a grilled cheeze and need a dipping companion. Either way, we’ve got you covered!

Course Main Course, Side Dish, Snack, Soup
Prep Time 5 minutes
Cook Time 30 minutes
Total Time 35 minutes
Servings 4
Calories 161 kcal
Author Minimalist Baker

Ingredients

  • 2 large red bell peppers left whole
  • 1 28 ounce can crushed or peeled tomatoes in juices
  • 1 6 ounce can tomato paste
  • 1 cup water sup up to half with coconut milk for creamier soup
  • 1 14 ounce can light coconut milk use full fat for creamier soup
  • 1.5 tbsp dried dill
  • 1 tbsp garlic powder
  • 1 tsp dried basil
  • .5 tsp sea salt
  • .5 tsp black pepper
  • 3-4 tbsp coconut sugar
  • pinch red pepper flake optional for heat

Instructions

  1.  Roast red peppers in a 500 degree F oven on a foil-lined baking sheet until tender & charred on all sides (about 10-15 minutes in oven). Then wrap in foil to steam for a few minutes.

  2.  In the meantime, add remaining soup ingredients to a large pot and bring to a simmer. Then unwrap red peppers, let cool to the touch, and remove charred outer skin, seeds, and stems. Add to soup.

  3. Transfer to blender or use immersion blender to puree soup. Then transfer back to saucepan/pot and bring to a simmer over medium-low heat. Taste and adjust seasonings as needed, adding more coconut sugar to sweeten, red pepper flake for heat, basil or dill for earthiness, garlic powder for overall flavor, or salt for saltiness.

  4. Let simmer on low for at least 10 more minutes. The longer it simmers, the deeper the flavor develops.

  5. Serve as is or with some nutritional yeast on top for protein.

  6. Leftovers will keep covered in the refrigerator for 4-5 days or the freezer for 1 month.

Recipe Notes

Recipe from Minimalist Baker website. 

*from Minimalist Baker.

The Importance of a Prosthodontist

The Importance of a Prosthodontist

Not many people know what a prosthodontist is, so I wanted to take the time to explain what exactly my specialty is all about and why it is important for the cleft patient to see a prosthodontist .

Really, this specialty in dentistry can all come down to one word: PLANNING.

As prosthodontists, we have had extensive training in treatment planning, which is actually my favorite part of treatment, besides seeing my patients’ smiles when we are finished .

My definition:

A prosthodontist is a specialist in dentistry who is responsible for putting anything that is fake, or man-made, and putting it into the mouth.

This general definition can apply to things like dental implants, crowns, and dentures. You’re probably thinking: But wait, can’t a general dentist do that?

And the answer is: YES , but wait .

The difference is that prosthodontists have had training in how to visualize the dentition as a whole, and we have a better understanding of cause and effect when it comes to restoring the mouth.

How this relates to a cleft patient:

This is where you come in! 

Maxillofacial Prosthetics:

For a cleft palate patient, before closure of the palatal defect, there is a communication between the roof of the mouth and the nose.

In order for the patient to be able to eat without food escaping through the nose , and also for the patient to be able to speak, especially for an older patient, that defect needs to be blocked with something that would resemble a palate. This is called an obturator.

Also, if the palate has been repaired, but the patient still experiences speech problems , the patient can sound nasally due to missing tissue in the soft palate. A speech bulb helps to close this tissue deficiency or lift the soft palate in the back of the throat.

A maxillofacial prosthodontist is like a super prosthodontist because there is a one year fellowship these doctors go through after the completion of a prosthodontic residency. (This is what my husband is going for right now).

We will have a whole post dedicated to this topic at a later time, but for now, this gives you the basics.

When to see a maxillofacial prosthodontist: Prior to closure of the cleft palate, whether as an infant, as early as 3 months old, or as an adult who has not had cleft palate surgery for any reason.

Treatment Planning:

Most cleft patients are missing either 1 or more front teeth due to the cleft and lack of bone. If there is no bone, there can be no teeth ! When the patient is undergoing orthodontic treatment with braces, it can be an important time for the orthodontist to consult with the prosthodontist to help set the patient up for replacement of the missing teeth in the future.

There will be a time in the cleft patient’s early childhood, before braces, when the patient will not have any false teeth in place. This is the perfect time to become acquainted with a prosthodontist, who will begin to direct treatment. (See Flipper section below)

The prosthodontist can help evaluate the space available and let the orthodontist know if certain teeth should be moved into certain areas or if we need a larger space for the possibility of implant placement in the future.

The prosthodontist can also advise the oral surgeon about any teeth that need to be taken out in order to plan for the final treatment in the future.

Lastly, the prosthodontist will oversee the patient’s treatment to make sure all dental specialists are on the same page because the prosthodontist will have an end goal in mind .

Flipper:

During orthodontic treatment with braces, the orthodontist can put false teeth on the brackets so when the patient smiles, there are teeth there to maintain the space and also for social reasons .

When orthodontic treatment with braces has ended, the patient will most likely have an orthodontic retainer with false teeth attached to it. These retainers can be bulky with a wire that runs across the front of the teeth. A prosthodontist can make what is called a flipper until the patient is ready for definitive and final treatment to replace the missing teeth.

A flipper is meant to be temporary, and it is a partial denture that is weaker than a final partial denture. It replaces the missing teeth and is very esthetic. Socially, this can change a cleft patient’s life. I know it definitely boosted my confidence !

Final treatment options for missing teeth:

The prosthodontist will go through all treatment options when the patient is at the end of cleft repair treatment in order to replace the missing teeth. Below are the options, but we will dive into these in more detail in a later post.

Removable partial denture: As the name gives away, this is a removable option to replace the missing teeth. It has a base of metal with clasps around the teeth, and then the teeth are made of acrylic, along with the pink acrylic to resemble the gums.

Fixed partial denture: This is what is commonly known as a bridge. In this situation, the teeth on either side of the missing teeth can be drilled down in order to fit a crown over it, and a fake tooth will be connected to those crowns on either side.

Dental implants: After evaluating the bone in the cleft site from bone grafting, dental implants may be placed to replace the missing teeth. The dental implants act like the root of a tooth, and a crown will be attached to the dental implant.

My personal treatment:

Early:

I had an obturator made by a maxillofacial prosthodontist at a cancer hospital, called Roswell Park Cancer Institute. Many maxillofacial prosthodontists work at a cancer hospital because many of the head and neck cancers can cause defects, requiring a prosthesis.

Middle:

I had no idea what a prosthodontist was when I was young and neither did my parents. For this reason, I went from age 6-14 without two of my front teeth. I absolutely despised smiling or laughing, and I felt so insecure. It was such a relief when I had braces and they told me they could put false teeth on my brackets. It pains me to know I could have had something like a flipper during this time .

End:

After my braces were off, I wore a bulky retainer for about 3 years until my general dentist asked me if I had any plans for replacing my missing teeth. She then encouraged me to go see a prosthodontist after I told her I did not know what my next step was going to be. I had the most amazing experience with my prosthodontist. He fabricated a flipper for me, which I wore for 4 years. When it was time, my prosthodontist presented 3 treatment plans to my mom and me. We decided to go with dental implants. My prosthodontist planned my implants, and my oral surgeon placed them according to where the prosthodontist wanted them. After about 5 months of healing, my prosthodontist made an impression and restored my implants with crowns. I FINALLY HAD TEETH!!!

This was the most rewarding experience of my life, which is why I wanted to become a prosthodontist. You can see though how my life could have been drastically different if I had known something like a flipper was possible for me during ages 6-14.

I wrote this in the hopes that it can help you see a prosthodontist, and now you know what one does as well!

Timeline of Events

Timeline of Events

One of the biggest questions I get as a practitioner is: When can I expect to have my next surgery?

And an even more frequent question I get is: When will this all be over, so I can feel normal?

These questions are completely expected and customary because I remember that anxious feeling I would get as a patient when I would attend the Monday night, once-a-month craniofacial team appointment at WNY Children’s Hospital with my parents. I always wanted to know when the next surgery was so I could prepare for it, but I also remember having clammy hands just thinking about having to go through the general anesthesia and whatever recovery might mean for this particular surgery.

If you are a cleft patient, my guide will help you prepare for your next steps so you can know what to expect and when. Also, it should help steer you in the right direction for when you are unsure of what type of doctor you should be seeing.

If you are a parent of a cleft patient, and you were anything like my parents, I know you will find my guide helpful because this is completely new for you. My parents always wanted to be strong for me, and I know it would have helped even more if they knew what to expect over the course of their child’s treatment for when things would occur.

Below is a simplified outline for when you can expect to have certain procedures and also when I recommend you should be seeing certain doctors. These times are approximate and will vary for each individual, so please keep that in mind. Also, I will do blog posts on each aspect of treatment, so the following guideline is simplified and meant to be used as a quick cheat sheet for reference. This timeline is also assuming that each surgery has been successful.

Cleft Lip & Palate Treatment Timeline:

1st week of life: NAM (Nasoalveolar molding) Appliance

An orthodontic device that helps to shape and improve the position of the nose. Adjusted every week by pediatric dentist.

~3 months: Cleft Lip Repair

The Rule of 10s: Surgery is performed when the patient at least 10 weeks old, 10 pounds, and has a hemoglobin count of at least 10 grams

~4 months: Obturator Fabrication

A maxillofacial prosthodontist makes this. It restores the separation between the nose and mouth.

~10 months: Cleft Palate Repair AND Tubes in Ears

I recommend having these done at the same time to avoid 2 surgeries. The cleft palate repair is done by an oral surgeon, and the tubes are placed by an ear, nose, & throat doctor.

~18 months: Speech Evaluation

Speech therapists will evaluate speech & child will be in speech therapy until about 5 years old.

~3 years old: Craniofacial Clinic visits

The patient will start meeting with the craniofacial team annually.

~4 years old: Secondary Speech Evaluation

A speech pathologist will evaluate if a surgery is needed for the palate to improve speech or if speech therapy should be continued.

~5 years old: Lip/Nose Revision

The plastic surgeon will revise the lip and/or nose if it is necessary.

~8 years old: Rapid Palatal Expansion

An orthodontist will begin treatment at this point. Usually, an RPE is done first to expand the palate that is constricted due to scar tissue.

~10 years old: Alveolar Bone Graft

An oral surgeon will use bone from the hip to build up the defect at the gumline.

~11-18 years old: Braces

The orthodontist will continue treatment & can place false teeth on the braces to fill in the missing teeth.

~18 years old: Orthognathic Surgery

This surgery is performed by the oral surgeon. If there is a discrepancy in the bite, the jaw will be moved so the upper jaw and lower jaw come together correctly.

~19 years old: Nose Reconstruction

The plastic surgeon performs this surgery to correct the misalignment of the nose.

~19 years old: Flipper Fabrication

A prosthodontist is essential as soon as braces are removed. The prosthodontist will make a prosthetic device to replace the missing teeth until a definitive treatment plan is decided upon.

~21 years old: Dental Implant Placement

Dental implants should be planned by the prosthodontist and placed by the oral surgeon. These will take 2 months to heal before crowns can be placed on them.

 

 

Of course, there are alternatives to some of the treatments listed above. For example, instead of dental implants, a patient may decide a removable partial denture or fixed partial denture would be a better option in his or her particular situation. I will address specifics in later posts, but please feel free to ask any questions or comment on what you would like to be added below!

Thanks for visiting

Hello World!

Hello World!

I’m very excited to start this journey with you. I am a Buffalo, NY native, and I’m currently residing in the beautiful and amazing city of Los Angeles. I was born with a unilateral cleft lip and complete cleft palate. At this point, I have lost count of the number of surgeries I’ve had for the defects. My earliest surgery was when I was 2 months old, which was for the lip closure, and my latest surgery was about 2 months ago, which was due to a failing bone graft and consequently, failing dental implants after 10 years… but we can get more into that topic later. In between those, there have been around 20 surgeries including nose reconstruction, lip reconstruction, bone grafting, tubes in ears, and a perforated eardrum.

My incredible craniofacial team in Buffalo, NY was absolutely amazing and did such a great job with combining surgeries when possible and also with making me feel like I was part of a special family. Because of my experiences, I always knew I wanted to be in the medical field for my career choice. It wasn’t until I was at the tail end of my treatment that I realized exactly what I wanted to do. This was around the time I had finally had a successful bone grafting surgery to augment my alveolar bone defect from the cleft (bone was placed where my cleft defect was in the front and roof of my mouth), and I was ready for a final treatment plan for my missing right lateral and central incisors (front teeth on the right side). I was blown away by the organization and options presented to me by my prosthodontist (specialist in dentistry, focusing on anything fake being made outside of the mouth and going into the mouth). My mom, who was my biggest supporter, and I had decided to go with the option of dental implants and crowns.

After about a year of treatment, I could not believe how “normal” I felt with my new teeth. My confidence had soared, and I felt like I was finally able to live a more normal life, being able to bite into food and smiling without hesitation. What my prosthodontist did for me was much more than just provide me with a new smile. That was when I knew I wanted to be a prosthodontist.

I received my Bachelor of Science degree from SUNY Geneseo, and I went to dental school at University at Buffalo School of Dental Medicine, which was where I met my now-husband, Paul. Both Paul and I then went on for our residencies in Prosthodontics at West Virginia University School of Dentistry, where we also received our Master’s degrees. We have now been married for almost 3 years! Paul is the kindest, most loving, and supportive husband. We are currently in Los Angeles so he can complete his Maxillofacial Prosthetics training at UCLA. If you’ve ever had an obturator to close your palate due to a cleft defect (or any other defect), a maxillofacial prosthodontist is the one who does it! The fellowship is a year long, and after the year is up, we are moving back to Buffalo, NY to finally settle down.

 
I have always wanted to be an aid for patients going through cleft lip and palate treatment. I would like to share my own experiences as well as case reports of patients that I see in my own practice. It is my hope that this blog will help bridge the gap between patients and the craniofacial team to help patients know and understand the next steps in their treatment and what to expect while healing. I will also be doing a “Fun Fact Friday,” when I will be sharing products or recipes that I recommend to help the healing process.
 
Take a look around, and feel free to ask any questions you may have. Thank you for visiting!
 
And you can find me HERE and HERE. Say hi !