Re: REPOSTING MESSAGE - New to the group--baby with c-toma

[Guest guest]

Sorry, I didn't answer because my child was a bit older when diagnosed. He was 3 years old. He did have a surgery when he was just under 2 for a congenital hernia. It is a different surgery but, in general, I would say that it is actually easier for a younger child. They don't know what's coming and then they don't harbor resentment or anger afterward. Once the child gets older, then you can get into some emotional situations that are worse than the surgery (IMHO).

The babies are more likely to cry and scream a lot as they come out of the anesthesia, which is very hard. When he was 2, the surgeons allowed me to go with him and hold him on my lap until he was actually asleep under the anesthesia. This was good and bad, as it turned out. He didn't have to separate from me by having somebody take him out of my arms, but I had to hold his arms down as they applied the mask to his face and he screamed and tried to push it away. After he was asleep, he sounded like he was choking but they said it was a normal sound that children with big tonsils make... well, maybe it was easier for him and so it was worth it. But it was harder for me. When he was just a little older, they started giving a tranquilizer in the waiting room and then they would take him out of my arms to the OR, but he didn't get upset by it. This way actually seems easier to me.

He was very upset to wake up and find tubes, etc... on his arms and legs. He still hates that part. He dreads the IV every time, even though they put it in after he is asleep. So, I don't know what to suggest for that.

Our medical system tends to underestimate pain in young children and babies, so be sure you get appropriate pain meds. Tylenol w/codeine at least. I would think it would be better to give the pain meds than to risk the child is in pain and unable to express it. This happened to my son with his first ctoma surgery (even though he was older) and is still horrible to remember. Young children recover fast and don't need the pain meds long enough for it to cause any new problems. I talked to a friend who is a Children's Emergency Room Physician at some length about this. After that, I insisted on morphine for the first 24 hours after the next few surgeries. As Curtis got older, he didn't seem to need such strong medications and now Tylenol w/Codeine seems to be enough. And how long he needs it is different for different surgeries...sometimes only for 2 days, but sometimes as long as 4. I don't know what makes the difference.

We are not a one surgery case, I'm sorry to say. We've had 5 so far.

Yours,

Marie

[Guest guest]

Hi ,

My son is 7 1/2 now. We've had some good news lately. Last May, a new surgeon suggested that we do a tonsillectomy and adenoidectomy with the hope of improving the eustachian tube function. After doing our research, we decided to try it and it seems to have had a good result. I took my son last week for a hearing test and, for the first time ever, the ear drum was actually moving when they puffed air on it! I wonder you all couldn't hear me screaming for joy that day. It's not perfect; there's still some negative pressure as well, but less. AND he was just getting over a cold at the time, so I have hopes that the function is really even better than what they saw that day.

Last August, they did one more removal and he is scheduled for a second look in June. If they find nothing, they'll do a reconstruction at that time. If you are a praying person, please pray for us!

Yours,

Marie

[Guest guest]

Oh! One more important thing that I forgot in my previous... on the first night, do wake your child up to give her the pain meds on schedule through the night. On my son's first surgery, the surgeons told us almost nothing about pain and pain control, except to say that this was a relatively painless operation (to who, I'd just like to know). I thought he'd wake himself up if it hurt and then I could give him the medication, but instead he slept through the night and then woke up in the morning with his body in shock from so much pain. He couldn't even move. Didn't get up to pee. Didn't turn his head. Threw up even little sips of water. After awhile of this, we called the doc and they were going to have us bring him back for some IV treatment (he would have HATED this). However, the doc said we could try one more thing first and gave us a prescription for the Tylenol/Codeine. 15 minutes after a dose, Curtis turned his head for the first time that morning, 10 minutes after that he was at the table eating french fries and ice cream (sounds yucky, doesn't it? I was so happy to give him anything he wanted that morning...) and, when he finished, he went out and rode his bicycle down the block. That's how fast kids can recover IF you control their pain. Ever since, I give the meds on a schedule, around the clock, for a few days. On the 3rd day, I test going a little longer. One time, on the 2nd day, he told me he didn't need it anymore.

Actually, now that I think of it... maybe the difference in why he only needed pain meds for 2 days with that surgery was that they didn't use sutures, they used glue that time. Has anybody else had it both ways, who can comment on the relative pain from those two techniques?

Marie

[Guest guest]

In a message dated 10/18/2004 3:52:11 PM Pacific Standard Time, robert_powell82@... writes:

Wonder if the adenoidectomy and

tonsillectomy would help me. I have huge tonsils but

they don't seem to cause trouble. Glad to hear your

son's hearing is improving.

In my son's case, his tonsils looked big but they didn't get infected themselves. Not once, never. But he did have compromised eustachian tube function with fluid in the ears if he had a little cold, etc... When the surgeon removed the tonsils, he came out and said that Curtis' tonsils were "inset," which I take to mean starting deeper back than usual. He said that "inset" tonsils really do block the eustachian tubes sometimes so he hoped for a good result. But he couldn't tell they were inset until he tried to remove them. And the tonsils themselves never gave the tiniest bit of trouble. All the symptoms were in the ears. So, I'd say give the tonsillectomy/adenoidectomy a try, based on our experience. However, I should tell you the tonsillectomy was clearly way more painful than the tympanomastoidectomy.

In terms of my son's hearing, that is not improved as the ctoma destroyed his anvil and the top of his stirrup very early on. He has no conductive hearing on the right side and air in the middle ear doesn't help that. But the surgeon says that restoring a normal airflow to the middle ear will reduce the re-occurence of the ctoma. In fact, in the August surgery (to remove some ctoma we knew was there), the surgeon came out and said he saw evidence of past infection but NO current active infection, which he took to mean that the middle ear was getting back to a normal, healthy state. I'm so happy about this. He attributed that improvement to the tonsillectomy, too. I think you should try it.

Marie

[Guest guest]

In a message dated 10/18/2004 9:16:17 PM Pacific Standard Time, robert_powell82@... writes:

Can't they do reconstructive surgery for him? Go to

www.ghorayeb.com and check out the ossicular

reconstruction page. There are several examples of

how they install a prosthesis. The erosion of the

incus and malleus is the one I have.

Yes, they could. In fact, they did once already and it worked really well, but only for a short time before the ctoma came roaring back. And it keeps on coming back and mucking things up. Now, they aren't going to do the reconstruction until they go in on a second look and find no regrowth. With the improvements we've seen after the tonsillectomy, I'm hoping for a clean ear and another reconstruction in June. Meanwhile, we have a hearing aid consultation tomorrow.

Marie