View Full Version : tonsils

March 17th, 2004, 10:08 AM
Kraig just had a repeat sleep study done last week, which showed that his obstructive sleep apnea has gotten significantly worse and also has something called obstructive something hypoventilation (can't remember the complete name). Basically, this means he is obstructing breathing in and breathing out. Long story short, they feel it's urgent to remove his tonsils. I am scared to death of this surgery. He's 12 already and he had a horrible time with his adenoids. The tonsils didn't come out with the adenoids because that happened pre-MPS dx. I've discussed tonsilectomy with his ENT several times, he's drawn me a picture of how the procedure will go, etc. I think he's scared to do the surgery himself . . . . . . my question . . . . have any of your children had tonsilectomy at Kraig's age? He's 12 dx with MPS II.

March 17th, 2004, 10:34 AM
Sorry to scare you Kris, but of all the surgeries Kaity had the tonsils were the worst! And she was only 3 1/2! :(

Tough decision for you indeed.

Sheila George
March 17th, 2004, 12:50 PM

I do not have any experience with this but wanted to offer my support. I know it will be a tough decision but in the end you will make the right one for Kraig.

Priscilla Raftery
March 17th, 2004, 12:51 PM
Joey was 6 when he had his tonsils removed and it was his worst recovery from surgery. He's had multiple surgerie's (ear tubes, dental work, hernia's) and always bounced back to near normal activity that day or the next. After his tonsilectomy, he just didn't have any appetitie or energy at all. Then the third day after the surgery, he hemorrhaged and had to be re-admitted to the hospital. I'm not trying to be scary either, but his ENT told us that most people think of tonsilectomy's as minor surgery, but it is major surgery and the ENt himself said he would not want his own kids to have to go through it unless it was imperative. I do have to say that Joey's breathing at night did improve immensely and he no longer snored, so I'm glad he had the surgery. Having said all that, I believe Kraig can have successful surgery, but I would be sure all questions were answered and that the dr and anesthesiologist have all the MPS information. My thoughts are with you on making this tough decision. Priscilla

The Rea Family
March 17th, 2004, 12:59 PM
My thoughts are with you also.

Laura Brodie
March 17th, 2004, 04:04 PM
Thats a difficult decision to make Kris. Could you consult Dr Muenzer? Over here Ed Wraith is always willing to help out on that type of decision or at leastsupport other colleagues who are doing surgery-just a thought love Laura

March 17th, 2004, 04:11 PM
Hi Kris,
I don't have much to add since we have yet to have this experience yet but I'm sure with all the information you have along with the ENT's knowledge of Kraig's condition, you'll be able to make a decision in Kraig's best interest! Good Luck and keep us posted.

Sharon Cochenour
March 17th, 2004, 04:48 PM
Andrew had his tonsils out but he was only 3 1/2. It was pre- MPS diagnosis, we were waiting on skin biopsy results. He ended up spending 5 days in the hospital after surgery. Like Jessica, it was our worst surgery. I'm sure kraig will do fine, but make sure your ENT doctor pushes for an Anesthologist that has experience with MPS or airway problems because you know our kids have intubation problems.
After the surgery Andrew sleeps better, sounds better and hardly has any apnea. Keep us posted and we will support you in your decision. :shy:

March 17th, 2004, 06:51 PM
Priscialla wrote: I do have to say that Joey's breathing at night did improve immensely and he no longer snored
Kaity's snoring was better too...for awhile! Now she has scar tissue and polyps replacing everything that was removed (tonsils, adenoids and ear areas). The polyps are just horrible.

It makes me wonder if she wasn't better off left alone. Her breathing is 10 times worse that it was then. :frown:

March 17th, 2004, 09:09 PM
I can't add anything about tonsils being taken out at age 12 BUT....I can say that Seth has had a T&A when he was 3 (hes 5 in april). If the apnea is what your worried about with Kraig and having surgery I can say that Seth has had life threatning sleep apnea since birth and they have to intubate everytime they put him under, they also have to suction him because he aspirates his saliva. Maybe they should think about intubating kraig,for safety??? Also I wanted to add that Seths apnea did NOT get better at night time but did get better during daytime nap after his tonsils and adnoids were removed,his snoring did get alittle bit better maybe by 20%. Seth was on a feeding tube for the first 2 1/2 years of his life and we were having a hard time weaning him on to solids, after his T&A he seemed to handle some foods easier, so that was a good thing that came out of getting that surgery. Our ENT told us that if he could he would make it standard practice to do a T&A on every child beacuse after a certin age the tonsils and adnoids do nothing. He also told us that with Hunters syndrome people will assume that doing a T&A will get rid of the apnea but thats not always the case, Seths did not get better because his airway is actually collapsing on itself instead of some other object obstructing the airway (was that confusing????) hence, why positioning doesnt help (for seth anyway). We talked to several ENTs and they had told us that it was Seths tonsils that were causeing him to go into apnea. I guess my point is dont be surprised if it doesnt help, although I hope it does. Seth is on BiPAP...have they talked about BiPAP or CPAP for Kraig? It sounds as if Kraig and Seth have a similar type of sleep apnea.

Hope things go well and work out for the best.
Misty :)

Priscilla Raftery
March 17th, 2004, 09:10 PM
Oh my God, Jessica... :frown: sigh...polyps? I've heard of them, but not exactly sure what they are. Are they like cysts? How did you find out she had them? What problems do they cause? Is Kaity suffering any discomfort because of them? I don't suppose you'd have them removed (more surgery)...? Sorry to ask so many questions, this is a new one for me. I feel so badly for her :( . Priscilla

March 17th, 2004, 09:45 PM
Spencer had his tonsils removed when he was five, I think. It was a rough recovery as everyone has said, but what I remember most was that immediately following the surgery, in the Recovery room, Spencer had very severe apnea and scared everyone to death. He had already been extubated and he was still very sleepy and he would just stop breathing for the longest time. His o2 would fall dangerously low. We ended up staying in recovery for twelve hours waiting until he was stable enough to be moved to a room. I think the combination of the swelling from the surgery, the intubation and the narrow airway were the cause of Spencer's problem. His nighttime snoring and apnea did improve remarkably after he recovered. I'll be thinking about you Kris...

March 17th, 2004, 10:03 PM
Hi Kris,

Jesse has his out tonsils and adnoids out at 5 years old. They were the size of an 9 year olds that would have had severe throat infections the Dr. said. Fortunately Jesse did very well with both surgery and recovery. The best news is that he is now going to be 9 and we have not had one strep infection or ear infection since, (from 2 to 5 years we had one or both at least 4 or 5 times a year) and he does breathe and sleep better to this day than he ever had before they were removed. We still get minor colds and of course he has mild congestion at least 1/2 the time, but that's just him with allergies and so on, so we do the Zyrtec, and switch around to other antihistimines too along with ocassioanl Nasonex if it's a rough allergy week.

Keep us posted on if you do and how it goes. Our prayers and support are here for you and your family.

Patty and Jesse

March 18th, 2004, 12:27 AM
OK, This is my take on this.... OH NO!!! :shy:

Sami had her adenoids and tonsils out at 18 months and 3 years. She did fine!!! Jacob had his adenoids out at age 2 and age 4 and did fine! Over the years my kids have had 28 surgeries and they all went fine.....

Then, at age 11 yrs, 11 months, 13 days was Jacob's last surgery! (funny how you just remember all the dates and numbers, LOLOL) This was before the diagnosis and I was not worried. But he aspirated and stopped breathing. We almost lost him...... No more surgeries for him without major life reasons!!!!

During the last sleep study a new "baby" doctor reviewing his case said, "Why don't the stupid parents just take out his tonsils????" Of course my answer was very "condescending" and explained MPS in "baby" terms to this "DR"???

Sami has had 2 surgeries since Jacob's last and has done fine. Most of our children do great with a good team that is understanding of MPS. Just make sure it is really, really important and you have a staff that understand MPS!!


March 18th, 2004, 12:41 AM
I don't envy you this decision. Ricky had his tonsils and adenoids out at age 2. It was not easy but his breathing was better for a while after. But with Sanfilippo, he did not have the intubation problems associated with Hunter's. I'd agree with whomever suggested to talk to Dr. Muenzer and I'd add also possibly Chet Whitley. You would need to be sure to have an anesthesiologist who really understands Hunters. Maybe Joan could add some insight to this. Wishing you the best in this hard decision.

March 18th, 2004, 08:32 AM
HI Kris.
Chase is 12 yrs old with Hunters too. The most important thing here is which I am sure you know is the anesthesia. I am guessing that is your doctors major concern too. I am only going back one year to when Chase was 11 and they had to put him under to sew up both sides of his abdominal cavities and remove the VP shunt tube that was stuck through his testical and lodged in his scrotum.The concern then too was the anesthesia. There is a new way to do it where they do not have to intubate. It is called LMA. That is what they used on Chase as they did not want to intubate him because of a history of problems.I am sure by now you the right doctors in place for anesthsia. Mention LMA to them. It has been out for a couple of years. This would be my major concern.Chases tonsils were taken out earlier too at the age of 2 and a half. A huge difference in his sleeping after that. Now he too has the bad sleep apnea. We are waiting for the C pap to come this week. Rosemarie

March 18th, 2004, 09:43 AM
Taken straight from my medical dictionary:
A polyp is a growth or tumor on a mucous membrane. It may contain a stalk. Polyps are usually benign. They may occur anywhere in the body, but are most common in the nose, the cervix, the uterus, and the colon. (And then it continues on about how they can become cancerous in the colon).

Her ENT said they were common in the nose and ears and he has seen many patients who have them. He said they are more common in patients who have had several surgeries.

Kaity has only had polyps removed from her right ear. (So far they have stayed out of her left ear. We call her left ear the “good ear” because it seems to remain uninfected at all times. Until a few weeks ago that is! She was having horrible ear pain in her “good ear.” After the doctor looked at it, she didn’t have a polyp, but an abscess! He popped it and put her on tons of medicine and drops and so far it has healed well.

Back to the polyps in the right ear, they get so large that they protrude out of the ear opening. When they are removed they are usually ½-1” long in length. Once removed they cause horrible bleeding and have to be pressure packed for several days. Once the bleeding has stopped she is fine, and she never appears in pain with a polyp.

The ENT told me he wouldn’t even attempt the ones in her nose because of the bleeding she would suffer once they were removed. And of course Kaity is much too advanced for any extensive surgery, so basically she just has to deal with it. :cry:

The ENT said many of his ‘polyp’ patients do not complain of pain, but more annoyance (because of blockage) than anything.

We know that she has them in her nose as well because when she gets a really bad cold and does a bunch of sneezing, a polyp will protrude out the nostril. After the cold is gone it will work it’s way back up in the sinuses and is no longer visible, but I’m sure it drives her crazy. :cry:

And yes, her breathing and sleep apnea are horrendous. I’m not sure if it would be as bad without the polyps given the fact she has severe Hurler’s or not. She is getting “old” for a Hurler child and it is hard for one to tell whether it is her disorder or the polyps causing the most problems. :frown: My guess would be her biggest blockage problem is MPS.

March 18th, 2004, 09:59 AM
I really appreciate all the response on this topic. This is such a difficult decision. I have talked to UNC and am waiting to hear directly from Dr. Muenzer regarding this situation. My biggest fear with this surgery is emergency trach and bleeding issues.

Our doctors here have talked about c-pap, initially that was the primary focus. However, after the sleep study results have come in, they feel it urgent to see ENT to discuss the whole tonsil issue again. The delima is no surgery and try c-pap (not sure he would even tolerate it) and his heart can get worse or do the risky surgery in hopes of no major complications and that it would help with the sleep problems.

LMA has been used on Kraig when he had his last few anesthesia's, 2 for MRI and once for an ABR. Using the LMA and the drug propofal (sp?) worked wonderfully on Kraig. He has always been one to get very very sick with any type of anesthesia, but did not get sick with that drug.

We have our "urgent" appointment set up with our ENT at the end of this month. I guess we will talk to him and go from there. Thanks again for all the replies, I really appreicate it.

Sharon Cochenour
March 18th, 2004, 03:16 PM
Swelling, and inflamation of the airway was Andrew's biggest problem. He almost ended up with an emergency trach. They actually came out to the waiting room and told me they were going to trach. him, but were then able to finally got him intubated.
The biggest thing my ENT doctor told me was to make sure he got antibodics and Albuterol nebulizers before any surgery. That would reduce complications. We had done this and haven't had a problem since. He to did fine with the propofal and the LMA and has had surgery since without complications. The anestheslogist does pretty much what anybody recommends, and has given me a letter that Andrew has MPS and should always be considered a difficult intubation.
The other thing is anytime he has surgery we always push for a least an overnight stay at the hospital. Most doctors consider T&A as minor surgery without thinking through the whole picture about MPS kids and their airways being narrow, and reactions to anesthia. When Andrew got his port put in they admitted him because of his MPS diagnosis and possible complications for close monitoring. He only had a couple of episodes of minor apnea and then we went home the next day and he did fine.

Cynthia Anhalt
March 18th, 2004, 10:27 PM
Hi Kris, Conner had his tonsils out when he was 5. We had a completely different experience than those I've read about. Conner was supposed to stay over night, but was released from the recovery room to go home, when the doctor came by and found him scarfing down chicken nuggets and french fries! I couldn't stop him from eating his regular diet! He didn't want popsickles and icecream! I only hope Kraig has as easy of a time as my Conner did! Best of luck. :)