Cinci Update & Adenoidectomy Question

[Ainsley's Mom]

It took some time but I was finally able to get clarification from Cincinnati so now I'm able to recap.

While we were there we found there appeared to be more swelling than at her last scope. Still....she'd been capping all days, even with the larger trach size. Her supraglottic area is crowded/swollen/red. See pics:https://picasaweb.google.com/100892045555550734815/2012#5756146787038294178
(There is also a notable degree of suprastomal collapse).

Her FEES showed she is at risk for aspiration and her lungs, while stable despite some degree of eating over the years, are not 100% normal though she hasn't had pneumonia and requires no treatment. Still....Dr. C doesn't want to risk her lung health by operating on her airway because she'd probably be more likely to aspirate post-surgery. He said if he was going to do anything he'd start with a T&A (and I assume see what that does for her and take it a step at a time). I'm thinking the inflamed tonsils could be affecting her swallow. My next move will be to work toward passing a swallow study after a T&A.

Some of you might recall that A went in for a T&A in 2010. The tonsils weren't removed (they were small) and we only did a partial adenoidectomy because we'd heard that a full adenoidectomy can cause nasal sounding speech in kids with low tone. So apparently they must have grown back. But I don't think they do that when they are fully removed.

Our local surgeon agreed to do a T&A and it is scheduled for 7/23.

Considering her history would you opt to do a full adenoidectomy and take your chances with the voice? Anyone done a full adenoidectomy on a low tone kid and regretted it? Considering that Ainsley's been able to cap with this crummy airway, you just never know how much getting a bit of overreactive lymph tissue out of the way might help. Especially when she sleeps which is the real hurdle for us.

[kshell]

Natalie had a full adnoidectomy in October 2010 and she has hypotonic cerebral palsy. I'm not sure her voice is nasally, it is definitely raspy...... It's so hard to tell, it's not typical that's for sure. But I have always just chalked it up to the trach and airway surgeries. This probably hasn't helped you at all, but we don't regret the adnoidectomy or tonsillectomy at all. She would never have been able to be decannulated, even after reconstruction, without it.

[angelbaby]

i would ask cinnci, plus does ainsley have any oral vocab? if not do you forsee her getting some? perhaps discussing with a st as well? has she ever had secretions coming out her nose all waking hours, but not sick? my son had nasal phyrengal reflux very bad the first 4 years of life, we can not do a full remove for that reason <if he ever needs a removal>and also b/c he has so many other factors affecting his speech, he does have a oral vocab that can be hard to understand him without him signing it as well, also it sounds like dr c may have mentioned a aryteniod surgery to you?? that surgery itself has risk of chronic aspiration

[LKN]

I'd go for it! Our kids are different, but for us, voice quality was the least of our worries. A safer airway always trumped the voice.

With the crazy amount of swelling she's got, I'd risk the voice for some relief in her airway. It has to improve comfort--among other things--if those swollen tissues are gone.

Fingers crossed that the surgery goes well, she is more comfortable, and has a safer airway. :)

[Ainsley's Mom]

Natalie had a full adnoidectomy in October 2010 and she has hypotonic cerebral palsy. I'm not sure her voice is nasally, it is definitely raspy...... It's so hard to tell, it's not typical that's for sure. But I have always just chalked it up to the trach and airway surgeries. This probably hasn't helped you at all, but we don't regret the adnoidectomy or tonsillectomy at all. She would never have been able to be decannulated, even after reconstruction, without it.

That's good to know. If the choice is nasal speech or trach for life I guess nasal speech doesn't sound so bad. ;)

i would ask cinnci, plus does ainsley have any oral vocab? if not do you forsee her getting some? perhaps discussing with a st as well? has she ever had secretions coming out her nose all waking hours, but not sick? my son had nasal phyrengal reflux very bad the first 4 years of life, we can not do a full remove for that reason <if he ever needs a removal>and also b/c he has so many other factors affecting his speech, he does have a oral vocab that can be hard to understand him without him signing it as well, also it sounds like dr c may have mentioned a aryteniod surgery to you?? that surgery itself has risk of chronic aspiration

She says "Mama", all done (ah-da), up (uh), no (na) and tries to say yes(but it's pretty bad) as well as some other words that you really can't understand. I don't know for sure that she'll advance beyond that but I would think she might.

I had to Google nasopharangeal reflux. She doesn't have that. There have only been a handful of times she's even had a runny nose. For the most part it must just turn into post nasal drip because of lack of airflow through the nose (she usually can't wear a valve or cap if she's sick). The impedance probe results came back negative i.e. no reflux made it up near the airway. So if I'm understanding then there is no way it could have made it into the pharynx. Dr. C did not saying anything about doing surgery on her arytenoids just the adenoids (though he did note they are large). But anything airway that would widen the supraglottic area could lead to aspiration. It was an SLP who first told us about the risk to the voice and our ENT said the same, hence the reason for the partial removal last time. I'm just wondering if anyone here has experienced that.

[Ainsley's Mom]

I'd go for it! Our kids are different, but for us, voice quality was the least of our worries. A safer airway always trumped the voice.

With the crazy amount of swelling she's got, I'd risk the voice for some relief in her airway. It has to improve comfort--among other things--if those swollen tissues are gone.

Fingers crossed that the surgery goes well, she is more comfortable, and has a safer airway. :)

Yeah, I would think so too about the comfort and airway. The idea of causing a nasal sounding voice scares me though....

[san123]

Sanju had her adnoidectomy removed last month.Within a month i am seeing a big improvement in her actiities.In regards to her voice, she does make sounds, and cannot talk.But in her sounds , i don't see any difference.

[Linnae's Mom]

Susan--I was very hesitant to mess with Linnae's adenoids. I'm so glad we didn't. We have used lymphatic head and neck treatments and it has worked really well (I was very skeptical at first). The link below provides very little information, but maybe it could jump start your search. After one or two treatments you should be able to tell a difference--Linnae's bronchs showed a significant difference. We now get one treatment every other month.

http://www.spectrumrecovery.net/

We can talk more soon--I'll try to call you this weekend.

[Ainsley's Mom]

Susan--I was very hesitant to mess with Linnae's adenoids. I'm so glad we didn't. We have used lymphatic head and neck treatments and it has worked really well (I was very skeptical at first). The link below provides very little information, but maybe it could jump start your search. After one or two treatments you should be able to tell a difference--Linnae's bronchs showed a significant difference. We now get one treatment every other month.

http://www.spectrumrecovery.net/

We can talk more soon--I'll try to call you this weekend.

Funny I was thinking about calling you yesterday, but my kids came home early and after this and that it was too late. I'll be in and out, but hopefully we can connect via phone. :)

[tbhartman]

Feel free to message me, we've done all the lymphatic treatments around... Had never heard of this though.. My son isn't really low tone, only minorly.. wonder what that would mean... will be mentioning it though.

[Caty]

Susan, I saw both of your questions and I'll answer here. Nate's hypernasality was extremely bad for a while and we had a difficult time understanding him when he talked. He's either compensating for it, it's gotten better or we've gotten used to it. It's more likely the first 2 because while his speech is still difficult to understand to people outside our immediate family, I think it's due more to his overall speech issues and not the T&A.

Overall, I would take the hypernasality issues, as frustrating as they were/have been. The T&A made all the difference in how Nate tolerates and recovers from illnesses.

[Ainsley's Mom]

Susan, I saw both of your questions and I'll answer here. Nate's hypernasality was extremely bad for a while and we had a difficult time understanding him when he talked. He's either compensating for it, it's gotten better or we've gotten used to it. It's more likely the first 2 because while his speech is still difficult to understand to people outside our immediate family, I think it's due more to his overall speech issues and not the T&A.

Overall, I would take the hypernasality issues, as frustrating as they were/have been. The T&A made all the difference in how Nate tolerates and recovers from illnesses.

Thanks Caty! I was very interested in your perspective. Interesting about the illness recovery. That's good to know. Ainsley regresses a lot every time she gets sick and I've suspected the tonsils/adenoids.

As for the lymphatic treatments, though I think they are a good idea, I don't think they would do enough for Ainsley considering the state of her airway and the over abundance of lymphatic tissue. I'm not sure I'd cancel the surgery to try an alternative approach. I think the problem with the alternative approach is that the results would likely be temporary (requiring ongoing regular treatment) and we likely wouldn't be able to tell if it worked until we made it through another cold and flu season, then if it didn't work we'd be back to scheduling the surgery next year since we'd need to wait until cold and flu season is over. I'll think it over some more.