Palate surgery - any experience?

[shaz298]

Hi,



Luuk is due to go into hospital at the end of Aug ( although hopefully will get a cancellation for July) to start his palate surgery.



His cleft was closed when he was 9 months old, but has a very high arched palate which is very short with the muscles in the wrong place. His 'talking x-ray' showed that he should in fact be completely non- verbal due to the size of the gap between palate and back of his throat but that he actually uses muscles to talk which should have nothing to do with speech! Speech therapists were amazed.



The surgery to move the muscles and lengthen his palate will be done in 3 stages


Move the palatal muscles
Lengthen his palate
bulk up the back of his throat.
Each stage will be done 1 year apart and the next stage will only go ahead if the previous one was successful, in order to ensure his airway isn't compromised.



We have been told that the risk of the 1st stage not working is very low, but that Luuk doesn't have much muscle mass to work with.





My worries are:

That after surgery his palatal muscles will not work at all
The surgery will cause him so much discomfort that he will just gag/retch/vomit constantly due to his oral sensitivity and exaggerated gag reflex. ( a crumb on his tongue will result in him vomiting and they are going to slice his palate, stitch it up......)
That moving his muscles will mean that he loses his ability to use the 'wrong' muscles and will therefore lose his speech for now
He will struggle to re-learn how to talk once all 3 surgeries are complete
IN additon add in any infection/complication/ potential for the need for a central line for TPN if he just vomits all the time due to the feeling in his mouth.....and very few neck veins left so if that happens he'll really need a port a cath in order to preservew those veins.
Before the following stage of surgery can happen, he needs to have a nasal scope which I know he will not tolerate ( imagine NG tube but thicker).He had to be sedated for having his NG tubes changed so sensitive he was. Surgeon said sedation for this was not possible but 'we'll cross that bridge when we come to it!'.What if he won't tolerate it and he's had this surgery for nothing as the next stage can't happen without the scope being done.......
Has anyone had any experience of this kind of surgery, particularly with a child with oral sensitivities? Can you tell me what to expect???



Thank you xx

[PoopyFingers]

I had this surgery in about 1970 or 71! I was born in 68.

I had a very good repair to my cleft palate, and know little about it apart from my own experience except that it does have a high success rate.

Sorry I can't be of any more techy help IYSWIM.

Good luck

[PoopyFingers]

I did have a lot of orthdontic treatment as a teenager, which could have been better if they hadn't been so crap - but that's a different issue really. Times have moved on since then I'm sure!

[shaz298]

Thanks for that poopy. DId you have all 3 stages? Luuk had his closure when he was 9 months and that went well. Without this surgery his speech will always be very difficult and although he is using the miscles he's not supposed to he is difficult to understand much of the time. x

[occasionalposter]

Our DD has had a pharyngoplasty (all three of the stages you mention in one go I think)and a subsequent revision . First op when she was four, second when 6. First time she wouldn't eat for a week until we took her home when she was fine (could it have been the hospital food?). Second time was better because she was older so could be reasoned with - i.e. told "you can't go home until you are eating".
She did not have any oral sensitivity so can't help with that I'm afraid.
Both ops went well in so far as the surgeon was pleased with his results but neither resulted in her palate moving as it should.
Before surgery and indeed afterwards she was very difficult to understand even for us. When eventually the palate began to move ( at age 8 or so) her speech came on in leaps and bounds. She is now twelve and her speech therapist discharged her at the end of last year (after 9 years!).

[Boboma]

Hi,
My DD had the 2nd operation that you mention to lengthen her (already repaired) palate in April. It went really, really well. She was very sore just afterwards but they upped the pain meds and then she literally bounced back. I was amazed. The 3rd operation is a option for her in the future but I am hoping that we don't have to go there - it will depend on speech. I do know of plenty people who have had it though (from FaceForward forum) and it seems to be very successful.
When you talk about your DS using the wrong muscles at the moment is it that the back of his throat is bulging out to try and close the palate gap? Its something that they talked about when my DD had her X-ray. Anyway, our surgeon said that the effects of the op that my DD had can take up to a year to settle down, so it is really just a case of lots of speech therapy practice (which we do anyway for other reasons). At least with the repairs in place your DD will be able eventually to close the gap and make the correct sounds using the correct muscles - you are just going to have to be ever so patient. Ong term, it is the only way forward unfortunately, but it is awful putting them though surgeries.
I'm afraid that I can't offer any words of wisdom particularly about gagging. My DD was tube fed and is really sensitive to foods in her mouth but she doesn't gag these days so she didn't have that to contend with. From what I could make out (she is not really verbal) it felt to her like her throat was sore and she settled a lot when she had medicine. I really hope that your DD doesn't have vomiting problems. Maybe that's one that you could ask your cleft nurse about other people's experience. Again it is not an issue that anyone has talked about on FaceForward, but it does sounds like you DD has more oral sensitivity issues than most.
I hope that everything works out well for him in the long run. x

[shaz298]

Occasional - It took 4 years for her palate to move!!! The surgeon didn't mention that. If it takes 4 years for Luuk he'll be 10 by then. Bot worrying how that will affect his school work.She only said we wouldn't see improvement until after the 3rd stage............So pleased for you and your daughter that it was a success in the end. Luuk can be reasoned with but due to extensive hospital stays/surgeries and his oral aversion ( completely tube fed as he can't tolerate anything in his mouth) I suspect we are in for a bumpy ride. He needs to have the surgeries in 3 stages as he has something called Pierre Robin Sequence and it seems doing the 3 in 1 op for him would carry a fairly high risk that his airway would be compromised and he's need a trachyotomy! Thanks for replying.

Boboma - Great that your DD recovered so well. Luuk's oral sensitivities are pretty extreme whic is why I'm worried about how he will react to the feeling in his mouth - not only the stiches but also that fact that themuscles will be in a different place. We do feel wh have to do this in order to give him a chance of being able to speak effectively in the future, but like you say it is scary. Lucky we have had to give te ok for many many ops( one of which was a very complicated open heart surgery to repair 3 heart defect, so are veterans with that part of it. Up until he was 5, he speant about half of his life in hospital.

The muscles he uses to talk are muscles they had never seen used to make speech so thinking probably not the ones at the baack of the throat? But not sure. Thanks for replying.

Will come back and let you know how it goes. Hopefully he'll surprise us and sail it. However his body is very complex ( he is anatomically unique) and his body rarely responds in the usual way to anything, be that illness, surgery or medication...........keeping everything crossed for a good outcome and a speedy recovery for him.

xx

[shaz298]

Meant to say thanks for mentioning the Faceforward forum. I wasn't aware of it. Only the Clapa one and it's not very active. Off to check it out. x