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This one is about: Nasal Endoscopy
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Nasal Endoscopy before Pharyngeal Flap: Some posts from Cleft-talk:
Hello, I am Sandy, mother to Jacob 6 1/2 yr old with soft palate cleft. I am looking for anyone out there that has had a posterior pharyngeal flap, themselves or if their child has had one.
Jacob is scheduled to have one and his plastic surgeon recommended it this week, after hearing Jacob, at this age, still speaking with hypernasality. He has been in speech (therapy) since 2 years of age, trying to correct the problem with therapy alone.
I would like to know if there was a considerable difference in speech after the surgery. This is our main concern as to whether it will actually help Jacob's hypernasality problem. Our surgeon explained to us that he won't be 100% free of the problem, but that we should see an improvement. He also mentioned that we will probably still have some follow-up with more speech therapy.
Any comments or information anyone can forward I would appreciate it.
My daughter, Sarah, had a flap 2-1/2 years ago. We also were dealing with quite a bit of hypernasality. She has improved about 85%. I can't say that her speech is perfect, but boy does she sound great. Feel free to ask any questions that you need to. -- Cindy
The flap WILL result in a big difference in speech. I know many people who have had it done - and almost without exception, they report improvement in speech. HOWEVER (big one here) there can also be some pretty serious concerns with the flap. The biggest that comes to mind is obstructive sleep apnea. You should request that your doctor order a sleep study before doing the surgery to rule out problems with sleep apnea after the surgery is done. If it turns out that this surgery will create problems, there are other secondary palate surgery options available to you --- such as a Furlow procedure, or a Sphincter pharyngeoplasty.
Good luck. -- Joanne
Thanks for your post about your daughter having the flap surgery. I am just concerned about our decision to go ahead and have the surgery done. You see, Jacob's speech problems do include gaining control of the hypernasality, (which is evident when he is tired, or he has a mouthful of words to say, and tries to say them all at once) but he also has been working on improving on his articulation skills. That is the worse of the two problems. And, it is my understanding that articulation doesn't improve with this surgery. I hope you see where my apprehension is. He speech therapist said that "velopharyngeal closure was judged to be incomplete by the mirror test," and that the mirror fogged on non-nasal speech sounds. So, we do have some nasality
I am probably confusing things. I realize that this won't be 100%, but I would be happy with 85% and doing some more speech on his articulation problems. Mainly those are his front sounds of s, z, j, ch, zh, sh, tr, dr. Any suggestions?
His surgeon looked into his mouth on Weds., was quiet, usually he says, "the closure looks beautiful" didn't say anything, and had Jacob say a few choice words that definitely picked on the nasal problem, and said "we need to do a pharyngeal flap" It was hard to swallow at first, because I wasn't expecting it. We have given speech therapy a chance for the past 4-1/2 years. He thinks this is the time.
At what age did your daughter have her surgery? Has she had any problem with the flap? -- Thanks...Sandy
In Sept. 1997, I had a pharyngeal flap revision at 33. I had the original one done at 16 back in March 1981. I had a nasal endoscopy last June and it showed that the flap was not functioning like it should.
After my revision, there was a definite improvement. PS wasn't sure about doing this since there was soo much scar tissue. If you like, please go to my gallery pages and click on my 90s page. You can hear before and after sound files.
Like Joanne said, there is a risk of obstructive sleep apnea with pharyngeal flaps. I got asked about my sleeping habits when I went for a speech evaluation in Nov.
The pharyngeal flap helps with hypernasality not articulation. I am suppose to be doing a six-week trial run of speech therapy. -- Hugs, Kristi
"At what age did your daughter have her surgery? Has she had any problem with the flap?"
Sarah was 5 almost 6 when she had it done. She possibly does have a problem with sleep apnea due to the flap. I read that Joanne suggested you have your son have a sleep study. Do IT!!!!!!! Sarah didn't have one done, and now she will have to have one.
She also had problems with articulation - which obviously didn't get corrected with the flap but with lots of work, she is getting better!!!!!! -- Cindy
Thanks for the info. Have you had any problems with the sleep apnea that you and Joanne have addressed? This concerns me now, because Jacob was on a monitor, from birth to about 6 months because of apnea related problems. Do you think this is a warning sign for me to look
into it further?
I have explained to Cindy, in a return post, that Jacob's main problem is articulation, his hypernasality is only evident when he is real tired or having a long sentence to say. Then you can hear it more. With such a slight hypernasality problem, do you think the surgery is even worth it? Maybe it is just because I am so use to hearing him talk that way, it might be worse than I think.
Thanks again, I am heading into your sound pages right now. -- Sandy
Was Sarah a cleft of the hard palate as well as soft? What would have
you rated her hypernasality on a scale of 1-10? Ten being worse. I ask because I think Jacob is about a 2. But, then again, I am Mom, and Mom's seem to understand everything. -- Sandy
Sarah had a complete unilateral cleft of the lip and palate - both hard and soft palate. Take a peek in the gallery if you want to see her and my other kids too. On a scale of 1-10, I would say her hypernasality was about an 8.5. -- Cindy
"You see, Jacob's speech problems do include gaining control of the hypernasality, (which is evident when he is tired, or he has a mouthful of words to say, and tries to say them all at once) but he also has been working on improving on his articulation skills. That is the worse of the two problems. And, it is my understanding that articulation doesn't improve with this surgery. I hope you see where my apprehension is. He speech therapist said that "velopharyngeal closure was judged to be incomplete by the mirror test," and that the mirror fogged on non-nasal speech sounds. So, we do have some nasality problems."
You are absolutely right about your expectations of the flap surgery --- it primarily stops the hypernasality. However, I would definitely suggest more of a test than a "mirror" test. He needs to have a nasoendoscopy and/or a videoflouroscopy so that they have a good idea what they need to do to gain the best results. My kids, also "fog" the mirror -- but none of them actually sounds nasal.
Good luck - it does sound like, if speech therapy is not doing the trick, that you need to consider surgery...just WHICH surgery is the question. -- Joanne
I don't have a problem with sleep apnea that I am aware of. I have had my oldest niece sleep down here with me and have asked her if she has detected anything unusual. But she hasn't.
I agree with Joanne... Jacob needs to have a nasal endoscopy or a videoflouroscopy. I had TWO nasal endoscopy's done - the one in June and one in the OR the day of my surgery in Sept. Hugs, Kristi
Kristi or Joanne,
Who do you ask to perform the nasal endoscopy or the videoflouroscopy? And can you explain the purpose of these procedures. I am guessing they must measure the amount of air flowing through the nose or the severity of the hypernasality? I never heard of them before, and would like to learn more about them before I go in to have one done "cold" so to say. -- Thanks! Sandy
My PS did both of mine. With the first one he took some still shots of the pharyngeal flap. The room was full during my first one. PS, a nurse, one speech pathologist, and two student speech pathologists were there. The second, he just scoped me right before they put me out for my surgery.
With some people, an ENT or speech pathologist might do the nasal endoscopy. They will also do a recording too. Since my PS was doing the nasal endoscopy, I didn't have a microphone attached to me.
With a nasal endoscopy, a child must be old enough to cooperate.
For me the experience was not bad at all. The only problem I see with it all is when the PS or who does it squirts the local anesthesia up into the nostrils. I don't have much feeling in my nasal passage so the scope didn't bother me.
Please check out Zachery (the very last person listed in the galley). There are pictures of Zac going thru a nasal endoscopy. -- Hugs, Kristi
Speak with your ENT -- your ENT will probably do it, with the assistance of a speech therapist. If you are unsure, simply speak with the team coordinator, or your plastic surgeon. -- Joanne
Thanks for directing me to Zac's nasal endoscopy. Personally, I don't know if I would even have it done. It looks like it could hurt?!! I think maybe Jacob might like the videoflouroscopy instead? That sounds more like a ultrasound or something?? I can't see Jacob having the patience to sit there like that.
Now, it looks as if his speech therapist and ENT performed this procedure. If this is not done the same day as surgery, does the ENT forward results to the PS. Must I find a ENT that will work with my PS? We are having his surgery at a fairly large hospital, should I ask if this equipment is available there?
I guess I have a lot of phone calls to make on Monday. Thanks again! - Sandy
Thanks, Jacob has speech on Monday. I will talk to his therapist about all of this. Now my only question is, his speech therapist and recent ENT are about 1-1/2 hours away from the hospital and where the surgeon is. Do they do this nasal thing ahead of time and send the results to
the PS? I guess I will have to call our PS and find out what he prefers. It is just that his present ENT and therapist know him best.
I am confused as to why our PS didn't tell us about this nasal endoscopy. Do some PS do it just before surgery? And consider it a part of surgery? He said the surgery would take about 1-1/2 hours. -- Sandy
I'm not Kristi or Joanne but here goes. Aaron has had a nasal endo. done by his ENT a couple weeks ago in the office to confirm the reclosing of his choanal atresia. He is scheduled for a more intense one by the SLP in a month or so for futher evaluation of his speech.
The test can be done by either. It depends on what who is looking for. If it is a speech problem it will be done by a SLP. The procedure for a speech nasal endoscopy is: First the kiddo's nasal passages will be numbed. My SLP and ENT uses a spray form of a topical anesthetic. When that is working it (takes only a few minutes), an endoscope is passed up the nose and into the sinus. The child then goes through a typical speech eval. This way everything can be viewed from the inside to see if there is any structural reasons for the speech problems. Most of the time the entire thing is taped to be reviewed later. If it is a structural problem, surgery may be decided to be the best bet. Sometimes it can give the SLP an idea what is going on to be able to help in therapy.
Let me know if I can help anymore. -- Casey
Thanks for the info. Jacob is presently at speech at our local university clinic. I am not sure if they have the equipment to do this. If not, I am sure they can find a place I can have this done.
I will keep asking questions as they arise, and I appreciate everyone's input.
Since Aaron is around the same age as Jacob, how did he handle the nasal endoscopy? Was there any discomfort afterwards? Kinda gives me the chills thinking of them sticking the tube through the nose. -- Sandy
Aaron had a blast...until he tried to get up where his nose is reclosing, but that is because the scope was bigger than the hole.
The ENT even let Aaron look through the scope. He thought that was REALLY great, but it did not hurt him. He had to sit very still which is a wonder for Aaron, but he likes his ENT (is the only doc that lets him play with the chair... even plays with him)
PS: My take on things like this with Aaron is: forewarned is forearmed. We talked him through it, made sure he knew what was going to happen and gave HIM the control to stop or slow down if it bothered him.
I may be shaking in my boots at some of the stuff that has to be done to him but I NEVER let him know. That will only sets the kid up to freak out... and Aaron has been through some really weird stuff. As with all kids, the calmer you are the calmer they will be. -- Casey
"Thanks, Jacob has speech on Monday. I will talk to his therapist about all of this. Now my only question is, his speech therapist and recent ENT are about 1-1/2 hours away from the hospital and where the surgeon is. Do they do this nasal thing ahead of time and send the results to the PS? I guess I will have to call our PS and find out what he prefers. It is just that his present ENT and therapist know him best."
Yes, this test is diagnostic, so it has to be done before any surgery is done -- in fact, in a perfect world, it would be done before surgery is PLANNED. The results can (and most likely will) be forwarded.
"I am confused as to why our PS didn't tell us about this nasal endoscopy. Do some PS do it just before surgery? And consider it a part of surgery? He said the surgery would take about 1-1/2 hours."
Some do not take the time to do the tests necessary first. These guys tend to take the "cookie-cutter" approach to cleft repair -- they do the same things at the same time with all their patients - and so, they don't do the diagnostic tests that will help them to determine what is right for that unique patient at that time. I know I am sounding harsh with this -- but it is a reality, and one that I am hoping that we are getting away from.
My PS took a needless-syringe and squirted a few drips and I kind of snorted the stuff so that it would get back into the nasal passage. It wasn't too bad.
When I had it done in the OR, he warned me that the spray would be awful. And it was. LOL
It's not normal practice to do the nasal endoscopy in the OR. The PS wanted to have one more look before he did the revision to my pharyngeal flap. I didn't mind it.
I would have an ENT who works well with kids do the nasal endoscopy. Just my opinion. -- Hugs, Kristi
My 9 year old David has had both of these procedures done usually twice per year from 5 years to 8 years. He has had 2 pharyngoplasty operations and they use these tests to determine if that surgery had to take place and then afterward to make sure it worked.
His ENT (from the team) and his SP (from the team) do the VNE. He has a great ENT and he always holds the scope up to whatever play figure David has brought with him and pretends like he is scoping the figure. Once the scope is down, the roughest part is getting it past the gag area, David does fine and is not anxious to get it over. The SP then goes through a detailed speech evaluation. The entire time David is allowed to watch the TV and see what his throat area looks like. Sitting still is very important.
The VF is done by a radiologist and SP and for some reason, someone from Physical Therapy always attends. Barium is squirted into the nose and then they film him going through another speech evaluation. He always wants me to squirt the barium in. The barium makes the muscles visible. He is not in a position to see the monitor while they do this, so they replay it for
him. He is generally not uncomfortable at all for this one and it doesn't bother him.
Both of these tests are recommended by his PS. The entire palate team reviews them at the next staffing after they are done. Then whatever the PS says goes. He will always call me with the results and what his recommendations are.
David had lots of turbulence and had very hypernasal speech. They finally determined that physically he could not get closure on some sounds. After the pharyngeoplasties, his speech is so much better. No one has trouble understanding him now. He still goes to speech at school twice a week, but she works on other things with him also. He has trouble with r's and l's and she is working on those with him now.
We have been very fortunate, we have had the speech therapist from the beginning. He began speech at 8 months. He did have a trach and that really slowed down his entire speech and talking process. She was in a 0-3 program we used, then we saw her privately. She was at his K-3 school and is now at the 4th grade Satellite school. But next school year, we have to change.
I know the VNE and VF sound really bad, but they aren't as bad as they sound and can provide some very important information.
Take care! -- Nancy B, mom to David
I forgot to mention the nasometry test. It's a test to measure the amount of airflow during speech. I had one done during my pre- and post-surgery speech evaluations. A speech pathologist usually does the test.
Let me explain a little bit about the nasometry test: Jacob puts his nose in this nose-shaped mask. The mask is connected to a computer. The speech pathologist asks him to say various sounds and words. On the computer screen, it will show how much the air is coming from Jacob's nose during speech.
This test was major factor in showing the PS and speech pathologist that I needed a revision.
There's nothing to this test. -- Hugs, Kristi
Hi everyone! Adam's speech therapist, who works out of the Craniofacial Clinic, told me about a really great trick!!! She had been assisting on Nasal Endoscopies, and one of the boys was very reluctant to participate. They ended up letting him put the tube down his own nose! (The tube is
like a cooked piece of spaghetti.) Anyway, he really liked it. They tried it this way for the rest of the kids that day, and said it was a miracle. The kids got a kick out of it, instead of being afraid. She
also had them do one on herself, so she could see what it was like to be on the other side of the scope. She said it didn't hurt a bit. Anyway, I thought I'd pass this on. I hope it didn't gross anyone out! -- Laura F.
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