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Old 07-25-2009, 05:48 PM
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Question Tonsil Removal Surgery - Pros/Cons?

Any thoughts about tonsil removal surgery? Pros/cons/affects on the immune system in particular for trach kids?

I ask because Ainsley's tonsils appear red bumpy and enlarged (and have for a long time). Her first ENT said they may need to be removed in the future. When I brought it up at her last ENT appt her current ENT asked if she has frequent tonsilitis. I didn't know how to answer that. She's non-verbal, doesn't eat, how exactly would I be sure? I don't think she could communicate if it hurts or not. Plus she's had a lot of pain in her life so she might not know any different. She doesn't have fevers if that's what he meant.

Since her tongue sits back in her throat and that area is anatomically small (on her) I think having enlarged tonsils is not helping her airway. Plus if they feel like they look I would think it's uncomfortable or painful to swallow. I really wonder if it may play a role in her dysphagia.

We made an appointment in Aug. just to discuss tonsil removal with the ENT because he didn't really answer me when I asked(But we were there for the trach and had a lot of other things to discuss.) So I'd like to be prepared so we can make a decision right there. Thanks in advance for any thoughts or experience.
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SUSAN - Mom to Ainsley (age 7 - DOB 10/18/06) + Evie (age 13) and Adrian (age 11). Adorable and Trached since 11/06 (scarred vocal cords & OSA) capping with mixed success since 1/09, sagittal craniosynostosis (reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, rare form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery). Decanned 7/21/14.

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Old 07-25-2009, 05:58 PM
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Does she have sleep apnea? Eric failed his last sleep study because of apnea. The ENT said removing his tonsils would help alot. If he can get to the point of not needing the vent to sleep then we're going to start talking about ltp and decan. Tonsilectomy is tentatively scheduled Aug 17.
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Old 07-25-2009, 08:18 PM
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Parker's tonsils are huge. No infections to our knowledge but they are just big. Cotton has said they might need to come out in the future. I know they are loathe with Parker to interfere in any way with his airway unless absolutely necessary. But I also sense that there is a huge push now to keep them in for kids because we know now that they are part of the immune system.

So, my personal opinion is, generations of kids had them out as a matter or course and they survived. If there is any compelling reason to have them out, I think it makes sense. I will be interested to hear what the ENT has to say.

I'm also going to add here that Parker's ped in Canada and his ped here both have wanted them out. But Dr. Cotton and his ENT in Toronto wanted to leave them in. He's had his adenoids out.
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Old 07-25-2009, 09:28 PM
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Tonsils?
Yes Suzanne is right years ago they took them out all the time, but its not the case anymore like it was. I know that if you have apnea thats the first thing they try is removal of the adnoids and tonsils, but too that doesnt always resolve it.
Our experience has been this for several years the ent told us that Kaylies tonsils were huge (but she never had tonsilitis)and when we got close to decan that they would have to be removed in order to help the decan process along. but we were also told that tonsils are huge at least until a certain age. several years ago when Kaylie had a sleep study she was diagnosed with sleep apnea.but since we were not being decanned then we choose to not remove the tonsils either(didnt want her to have more surgery if it wasnt neccessary or wouldnt work). i was and still am very afraid to remove the tonsils especially were Kaylie is concerned because children with DS have a high risk for major problems after and during the recovery, so thats always bothered me. now 2 years later her tonsils are not large anymore and although we are not getting decanned this year because of other factors she doesnt have sleep apnea and her tonsils are not a factor anymore,(thank goodness) so i can say they do get smaller with age, unless of course there is a problem with them as possibly in Ainsleys case. The tonsils and adnoids both can grow back as well. they also help to fight infections as well.
Your theory about Ainsley makes alot of sense,so i hope that you can get the answers that you need at your next appointment, best of luck,,
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Old 07-25-2009, 09:35 PM
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Quote:
Originally Posted by suzanne2545 View Post
Parker's tonsils are huge. No infections to our knowledge but they are just big. Cotton has said they might need to come out in the future. I know they are loathe with Parker to interfere in any way with his airway unless absolutely necessary. But I also sense that there is a huge push now to keep them in for kids because we know now that they are part of the immune system.

So, my personal opinion is, generations of kids had them out as a matter or course and they survived. If there is any compelling reason to have them out, I think it makes sense. I will be interested to hear what the ENT has to say.

I'm also going to add here that Parker's ped in Canada and his ped here both have wanted them out. But Dr. Cotton and his ENT in Toronto wanted to leave them in. He's had his adenoids out.
Interesting about Dr. Cotton vs the other ENTs. Yes I think the ENT here is also erring on the side of keep. I generally think it's best not to remove any part of the body unless absolutely necessary but like you I can't help but think that lots of kids had them removed and were fine and if it can help the airway wouldn't it be worth it. I remember reading about a tube fed kid that had his inflamed tonsils removed and immediately afterward improved his eating. I know that may not be the case with Ainsley but what if it was? .....Are Parker's red or sore looking? If so does he say it hurts when he swallows?
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SUSAN - Mom to Ainsley (age 7 - DOB 10/18/06) + Evie (age 13) and Adrian (age 11). Adorable and Trached since 11/06 (scarred vocal cords & OSA) capping with mixed success since 1/09, sagittal craniosynostosis (reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, rare form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery). Decanned 7/21/14.

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Old 07-25-2009, 10:46 PM
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Just to clarify, Susan. All of the ENTs have been in favor of leaving them in. But all of the PEDS have wanted them out.

Parker's are very red. Inflamed, who knows???? He never complains about them hurting and he certainly seems aware of 'boo boos' elsewhere.

On eating. My niece ("typical") was a slight eater, like they were close to needing to do a more drastic intervention on the eating. She had a lot of tonsilitis and they removed them and suddenly she started eating. Anecdotal, but throwing it out there.
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Old 07-25-2009, 10:49 PM
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I was just discussing this at dinner tonight with DH-- We were also told for decan Joseph would need his removed- his adnoids and tonsils are large and covering his airway-- we are leaving them be for the near future because of the trach and they do fight infection, but once we get other problems fixed and are working to decan- they will probably be removed
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Old 07-26-2009, 12:26 AM
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Isabelles are HUGE as well. she is decannulated but still vomits. We think it is because of the size of them. She is on the waitlist to have them removed in the next 2 months. I also think it may contribute to her not been able to speak. I have read that large tonsils can inhibit the forward movement of the tongue. Can you ever remember having tonisitits and how hard it was to talk because they were so big - maybe that is the same for Isabelle. Her new ST look at them and she was amazed at the size of them.

We will try anything if it will help her to form words. As much as I dont want her to have yet another surgery, it just might benefit. It also may be the difference between needing a whiff of oxygen at night and getting off it.

I too am interested in peoples thoughts - particually in talking with huge tonsils.

Tracey
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Old 07-26-2009, 03:45 AM
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This is an interesting thread and definitely one I will discuss with sam's ent. I had my tonsils and adenoids out when i was 9 years old, they did it a lot back then and i had frequent bouts of tonsilitis. I've never seen Sam's tonsils as he rarely opens his mouth wide enough! I hope you can get the right information and make an informed decision. good luck
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Old 07-26-2009, 08:00 PM
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We have been looking at this issue closely as well. I have found out that there is more research on tonsils and their role in the immune system than I gave it credit for. Historically in prior generations it was thought removal was best in cases of repeated infection. Then we went into a period where it was thought we should leave them in place unless infections were chronic, continual and severe because the tonsils are part of the immune system, so tonsilitis may not be a bad thing necessarily.

Now, per what I have learned, the most recent research shows that tonsils are part of the immune system, but they appear to be part of the system that is completely redundant. Studies tracking illnesses in people who retained their tonsils and those who had them removed have shown no material difference.

I'm sorry I don't have documentation to show you. I learned this from a doctor in Philadelphia who had been working on this issue as his research, and I found him credible. I haven't gone much further in the research because it isn't Alex's tonsils (yet, but it will be, I think). It was another family member, and the parents decided based on necessity, and I haven't followed up on this any further.

Susan -- I don't know the extent of Ainsley's craniofacial surgeries so I am probably throwing out something irrelevant to you. I do know that removal of rear nasal/throat/pharyngeal structures like adenoids is a potential problem for some craniofacial children. For children with repaired clefts, the upper half of one of the adenoid sets is a supporting part of the repair, and as a result we were told Alex can never have them removed. The ENTs told us about it not too long ago and it was a surprise to me. It made me wonder what other repairs might be supported by internal structures, and whether the less common ones would be well enough understood by ENTs to know off the cuff like with clefts. I'd be shocked if tonsil removal would ever be a concern, but I'm not taking anything for granted anymore. I've had enough nasty surprises.
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Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/

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