Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 Hi Everyone. I have been ollowing this group ever since my daughter had her surgery for c-toma removal. She is due for 2nd look surgery Dec. 30th and hopefull reconstruction. She lost 2 and third bones in her ear. I just want to know what to expect in terms of restrictions. I am really worried due to the fact that she is 3 and out of my 3 girls the most hyperactive of them all. She doesn't stop running, jumping or just plain going till bedtime. Also when she had her first surgery they gave her tylonal with codine which she did need for the first 2 days and I swear the stuff made her even more active (If that is even possable). She did not want to rest and I don't know if it was the meds or that after taking them she felt better and so she wanted to play. i guess I jut want to know what we are in for and try to plan accourdenly. Thank you Steph--- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 Hi Steph - I can't answer questions on the 2nd surgery, our Hailey doesn't have her 2nd until later this year. However, Tylenol with codine does basically the same thing to our daughter. The first day she stayed knocked out, but after that the next few days she didn't want to sleep much and was ready to go. Sometimes it helps the pain but has reverse effects on sleepyness. Best of luck with the surgery. 2nd surgery Questions Hi Everyone. I have been ollowing this group ever since my daughter had her surgery for c-toma removal. She is due for 2nd look surgery Dec. 30th and hopefull reconstruction. She lost 2 and third bones in her ear. I just want to know what to expect in terms of restrictions. I am really worried due to the fact that she is 3 and out of my 3 girls the most hyperactive of them all. She doesn't stop running, jumping or just plain going till bedtime. Also when she had her first surgery they gave her tylonal with codine which she did need for the first 2 days and I swear the stuff made her even more active (If that is even possable). She did not want to rest and I don't know if it was the meds or that after taking them she felt better and so she wanted to play. i guess I jut want to know what we are in for and try to plan accourdenly. Thank you Steph--- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 , Thank you for your letter. How old is your daughter? When is she to have her 2nd surgery and how many bones will they be replacing? I am so glad you said that because I think her ped. thought I was crazy when I said that about tylonal with codine. he wanted my other daughter to take it for a Kidney infection and I told him my experiences with my youngest and he told me it doesn't work like that, He said it is designed to control pain and keep them sleepy. My ped is good, really knows his stuff with asthma (Which my 5 year old has) and my kids love him. He has great bedsidemanner with children but he acts very supior to the parents. I figure I will just take it since my kids like him so much. Katy's Surgon though is awsome for both the parents and the kids. He is a pediatric specialist working at Childrens hospital and so far I haven't met a person there I didn't like. Thanks again for answering my post. By the way, Love your name. Steph From: Neer <neermom@...>Subject: Re: 2nd surgery Questionscholesteatoma Date: Saturday, September 6, 2008, 8:58 PM Hi Steph - I can't answer questions on the 2nd surgery, our Hailey doesn't have her 2nd until later this year. However, Tylenol with codine does basically the same thing to our daughter. The first day she stayed knocked out, but after that the next few days she didn't want to sleep much and was ready to go. Sometimes it helps the pain but has reverse effects on sleepyness. Best of luck with the surgery. 2nd surgery Questions Hi Everyone. I have been ollowing this group ever since my daughter had her surgery for c-toma removal. She is due for 2nd look surgery Dec. 30th and hopefull reconstruction. She lost 2 and third bones in her ear. I just want to know what to expect in terms of restrictions. I am really worried due to the fact that she is 3 and out of my 3 girls the most hyperactive of them all. She doesn't stop running, jumping or just plain going till bedtime. Also when she had her first surgery they gave her tylonal with codine which she did need for the first 2 days and I swear the stuff made her even more active (If that is even possable). She did not want to rest and I don't know if it was the meds or that after taking them she felt better and so she wanted to play. i guess I jut want to know what we are in for and try to plan accourdenly. Thank you Steph--- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 Steph - My daughter is actually 4 1/2 years old. She was diagnosed April 29th and had her first surgery June 23rd. They removed all but her stapes bone. They actually weren't able to remove all of the c-toma so this next surgery is to hopefully remove the rest of it. Right now we are looking between November and December for the next surgery, we'll hopefully find out the date in October when we go back. The doctor said her c-toma was so agressive that he had to leave the stapes bone alone at that time. He said he hadn't she would have lost all hearing in her left ear. So for now it's a waiting game for her body to be healed enough to go back in and hopefully remove the rest of the c-toma. Then at that time we can hopefully see how bad the c-toma is. Her dr. is Dr. Eytan Young (we're in DSM, IA). He's excellent. Great with kids and with us. We switched to him at the first of the year, (after an ENT that kept putting tubes in and just didn't research), he's been a blessing to us. He actually said that when he cut the ear open he didn't think it would be so bad, however the c-toma decided to hide behind and above the hearing bones, he said it had been growing for years and he in no way expected such an agressive case. He said it was on the way to the brain. So than God we found him and thank God he got in there when he did. Dr Young did say if they can remove it all things should go good, if it's even more agressive this 2nd time that they will have to look at the wall down procedure. Of course our prayers are that it's not as agressive this time. We are just praying this next surgery he is able to remove the rest of the c-toma. She's a trooper, she knows everything and our 7 year old knows everything about this. We talk openly about it and explain it to anyone that asks. He did great with her scar, you can't even see it's there - well we can because we know, bot other wise you can't see it's there. Our ped is also wonderful, she referred us to Dr. Young. I mentioned the tylenol to her and she said sometimes kids just have a different reaction to it. Kind of like Benadryl - knocks many people out - on me doesn't do anything - same with Hailey. She's allergic to bees and when she's been stung we've been able to use it, it works but doesn't make her tired. My father in law has the same reaction to tylenol with codine, he's 53 (I think) and it doesn't know him out, winds him up! Hope surgery goes well. I'll be keeping you guys in our thoughts and prayers. funny thing, I actually thought the same when I read your name! 2nd surgery Questions Hi Everyone. I have been ollowing this group ever since my daughter had her surgery for c-toma removal. She is due for 2nd look surgery Dec. 30th and hopefull reconstruction. She lost 2 and third bones in her ear. I just want to know what to expect in terms of restrictions. I am really worried due to the fact that she is 3 and out of my 3 girls the most hyperactive of them all. She doesn't stop running, jumping or just plain going till bedtime. Also when she had her first surgery they gave her tylonal with codine which she did need for the first 2 days and I swear the stuff made her even more active (If that is even possable). She did not want to rest and I don't know if it was the meds or that after taking them she felt better and so she wanted to play. i guess I jut want to know what we are in for and try to plan accourdenly. Thank you Steph--- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 Hi Steph, After my surgery in July, I also was hyped up beyond belief. I couldn't stop and was sleepless at night even though I was exhausted. My doctor said that a small percentage of people have that reaction to the anesthesia and it takes a while for the body to process it. Interestingly, when my daughter was a child, she would become hyper-active on decongestants. All my friends' kids would be drowsy and sleep restfully when taking them and mine would run around in circles. Her doc said about 10% of kids have the opposite reaction to meds that usually calm other kids. She also was always the one who couldn't sit still very long even without the medication. So I guess your little one is in that small percentage that has these reactions. Hopefully it won't last too long this time around. Best to you both! > > > Hi Everyone. I have been ollowing this group ever since my daughter had her surgery for c-toma removal. She is due for 2nd look surgery Dec. 30th and hopefull reconstruction. She lost 2 and third bones in her ear. I just want to know what to expect in terms of restrictions. I am really worried due to the fact that she is 3 and out of my 3 girls the most hyperactive of them all. She doesn't stop running, jumping or just plain going till bedtime. Also when she had her first surgery they gave her tylonal with codine which she did need for the first 2 days and I swear the stuff made her even more active (If that is even possable). She did not want to rest and I don't know if it was the meds or that after taking them she felt better and so she wanted to play. i guess I jut want to know what we are in for and try to plan accourdenly. Thank you > Steph > --- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 Steph, Chloe had three ctoma surgeries when she was 3, and her first prosthesis just after she turned four. It was pretty tricky to keep her activity low. We rented lots of movies and made a special box of " quiet things to do " , and explained to her and our other children that it was very important for her not to jump or spin or get bumped for a little while. She actually did get bumped pretty hard by another child running by at church, but the prosthesis healed in beautifully. She had near normal hearing with it. Her ctoma is unusually aggressive, and we have lost two prostheses b/c of recurrance. We are going for a third try in a few months. She also has a strange hyper reaction to the codeine and just refuses to take it now (she's five and pretty opinionated about her own care). She would rather have pain than feel " all jumpy " . Honestly, most children do really well with ear surgery, and the nausea and dizziness are often more troublesome. (Although, my opinion is that I would need a week of valium just to agree to have tympanoplasty, then I would like six weeks of a good narcotic to get over the horror!) She has had ten ctoma related surgeries, and usually has something in her IV post op and a couple of doses of regular children's tylenol. She sleeps much better, and does not seem to be in terrible pain. I think the other Steph is right about telling her as much as you can. Knowing how things are supposed to feel takes away a lot of the fear, and helps her manage her pain in the best way for her. She uses the popular smiley/sad face chart to say how she is feeling. Do your best to plan ahead for low activity, but try not to stress too much. I have really enjoyed all that extra time I got to spend with Chloe, who is our third of four children. I know that we would not have the great relationship we do if we hadn't been forced to relax with her for eight weeks at a time LOL!!! That's my silver lining! On Sun, Sep 7, 2008 at 4:54 PM, nujerseygirl <nujerseygirl@...> wrote: Hi Steph,After my surgery in July, I also was hyped up beyond belief. Icouldn't stop and was sleepless at night even though I was exhausted. My doctor said that a small percentage of people have that reactionto the anesthesia and it takes a while for the body to process it. Interestingly, when my daughter was a child, she would becomehyper-active on decongestants. All my friends' kids would be drowsy and sleep restfully when taking them and mine would run around incircles. Her doc said about 10% of kids have the opposite reaction tomeds that usually calm other kids. She also was always the one whocouldn't sit still very long even without the medication. So I guess your little one is in that small percentage that has thesereactions. Hopefully it won't last too long this time around.Best to you both!>>> Hi Everyone. I have been ollowing this group ever since my daughterhad her surgery for c-toma removal. She is due for 2nd look surgeryDec. 30th and hopefull reconstruction. She lost 2 and third bones in her ear. I just want to know what to expect in terms of restrictions.I am really worried due to the fact that she is 3 and out of my 3girls the most hyperactive of them all. She doesn't stop running,jumping or just plain going till bedtime. Also when she had her first surgery they gave her tylonal with codine which she did need for thefirst 2 days and I swear the stuff made her even more active (If thatis even possable). She did not want to rest and I don't know if it was the meds or that after taking them she felt better and so she wantedto play. i guess I jut want to know what we are in for and try to planaccourdenly. Thank you> Steph> ---> ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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