Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 We just had our second reconstruction. My son is 7. He did fine with the titanium, no problems. Except that the cholesteatomas returned and blew it all out. And yes, it took longer than the initial removal. The first time it took two hours, the second time it took three hours, and this last time, it took two and a half hours. His recovery is rougher this time, because they did canal wall down. But our surgeon cleared him to go to school tomorrow. The surgery was on Wednesday. He is a very active, otherwise healthy boy. I just don't know how I am going to cover up the wound. I'm not supposed to, but it looks so awful, big hole and very bloody. Ugh, sorry, TMI. I wish your DD the best. > > Hey everyone - our daughter will be undergoing her 2nd surgery here in a week -- Nov 24th. > > They will be removing the rest of the c-toma .....and if it isn't too aggressive again they will reconstruct with titanium. > > Just seeing how most kids react to the 2nd surgery, does it effect them with the titanium? > also how long are they usually down? > > lets see, .... > > Is the surgery as long or is it longer than the initial removal? She was in for over 3 hrs the first time...was very aggressive and almost to the brain - dr was shocked b/c it was hiding and he didn't think it was that bad when he first got in there, wasn't until he got into the surgery he found how aggressive it was. > > anyway, if anyone that has went through this can give some idea on what to expect with this 2nd surgery that would be great. > > thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 I wanted to add that I am giving him penicillin every 4 hours. I think it is very important to stay on top of that, to avoid infection. > > Hey everyone - our daughter will be undergoing her 2nd surgery here in a week -- Nov 24th. > > They will be removing the rest of the c-toma .....and if it isn't too aggressive again they will reconstruct with titanium. > > Just seeing how most kids react to the 2nd surgery, does it effect them with the titanium? > also how long are they usually down? > > lets see, .... > > Is the surgery as long or is it longer than the initial removal? She was in for over 3 hrs the first time...was very aggressive and almost to the brain - dr was shocked b/c it was hiding and he didn't think it was that bad when he first got in there, wasn't until he got into the surgery he found how aggressive it was. > > anyway, if anyone that has went through this can give some idea on what to expect with this 2nd surgery that would be great. > > thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 , We'll be thinking of you tomorrow!!! We have done six tympanoplasty/mastoidectomy procedures with Chloe and they have all been different times, as short as 2 hrs to as long as five or six. I always ask the surgeon when I should start worrying, and he makes sure to have someone call up to the floor if he will be longer than that time to let me know she is doing ok. The prosthesis will not affect how she feels, but there will be activity restrictions until it has time to scar into place. We go in three weeks, so I know just what you're going through! Blessings, On 11/16/08, Neer <neermom@...> wrote: Hey everyone - our daughter will be undergoing her 2nd surgery here in a week -- Nov 24th.They will be removing the rest of the c-toma .....and if it isn't too aggressive again they will reconstruct with titanium. Just seeing how most kids react to the 2nd surgery, does it effect them with the titanium?also how long are they usually down? lets see, ....Is the surgery as long or is it longer than the initial removal? She was in for over 3 hrs the first time...was very aggressive and almost to the brain - dr was shocked b/c it was hiding and he didn't think it was that bad when he first got in there, wasn't until he got into the surgery he found how aggressive it was. anyway, if anyone that has went through this can give some idea on what to expect with this 2nd surgery that would be great.thank you------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 - Just thought I'd send an update on Hailey. We received quite a bit of good news yesterday! So C-toma completly removed!!!!! Prosthetic in place!!!!!! I know it can come back, but I'm focusing on the positives!!!!!!! I'll paste below what I sent to the family. On a side note, I took ear cuff thingy today and she started to open back up and talk. Same as last time, quiet and no talking while it was on. I'm so impressed with her, she's saying it doesn't hurt...but making sure to give meds in am and pm to make sure she can make it during the day. I hope all goes well with Chloe. We'll also be thinking of you. Okay, now here's what I sent to the fam Surgery was at 1130 AM this morning. At 230 the doctor came out and met with us. Doctor said they were able to remove the rest of the cholesteatoma tumor. The c-toma was wrapped around again, however they were able to remove all of it!!!!! The doctor was also able to complete reconstruction of the hearing bones he removed in the previous surgery. He was also able to save the stapes bone at this point. He did have to take part of another bone. He did say that if the c-toma continues to grow back and cause issues they may have to do a wall-down procedure that basically clears that air and makes it a tunnel. This is still a life-long issue we will have to watch for, but…. At this point we’re focusing on all the positives!!! The c-toma is gone and the prosthetic is in place. She will have better hearing than she’s ever had in that left ear. So only thing we have to worry about is the loud noises. With loud noises it may scare her at first. So we have to be cautious for now. We will keep everyone posted as the next week or so goes and then as everything develops. Thanks for all the thoughts, prayers and support. Hey everyone - our daughter will be undergoing her 2nd surgery here in a week -- Nov 24th.They will be removing the rest of the c-toma .....and if it isn't too aggressive again they will reconstruct with titanium.Just seeing how most kids react to the 2nd surgery, does it effect them with the titanium?also how long are they usually down? lets see, ....Is the surgery as long or is it longer than the initial removal? She was in for over 3 hrs the first time...was very aggressive and almost to the brain - dr was shocked b/c it was hiding and he didn't think it was that bad when he first got in there, wasn't until he got into the surgery he found how aggressive it was.anyway, if anyone that has went through this can give some idea on what to expect with this 2nd surgery that would be great.thank you------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 I'm so happy for you! I really do hope this is her last big surgery! I can't believe we only have three weeks left until Chloe's next one...I'm hoping for the same results. I know I don't have to tell you to watch her activity level until that 6 week checkup. Our Dr. always says no spinning or gymnastics or roughhousing...not fun for preschoolers! I hope she is less antsy now that she is a big Kindergartener! Blessings, and healing for Hailey, On 11/25/08, Neer <neermom@...> wrote: - Just thought I'd send an update on Hailey. We received quite a bit of good news yesterday! So C-toma completly removed!!!!! Prosthetic in place!!!!!! I know it can come back, but I'm focusing on the positives!!!!!!! I'll paste below what I sent to the family. On a side note, I took ear cuff thingy today and she started to open back up and talk. Same as last time, quiet and no talking while it was on. I'm so impressed with her, she's saying it doesn't hurt...but making sure to give meds in am and pm to make sure she can make it during the day. I hope all goes well with Chloe. We'll also be thinking of you. Okay, now here's what I sent to the fam Surgery was at 1130 AM this morning. At 230 the doctor came out and met with us. Doctor said they were able to remove the rest of the cholesteatoma tumor. The c-toma was wrapped around again, however they were able to remove all of it!!!!! The doctor was also able to complete reconstruction of the hearing bones he removed in the previous surgery. He was also able to save the stapes bone at this point. He did have to take part of another bone. He did say that if the c-toma continues to grow back and cause issues they may have to do a wall-down procedure that basically clears that air and makes it a tunnel. This is still a life-long issue we will have to watch for, but…. At this point we're focusing on all the positives!!! The c-toma is gone and the prosthetic is in place. She will have better hearing than she's ever had in that left ear. So only thing we have to worry about is the loud noises. With loud noises it may scare her at first. So we have to be cautious for now. We will keep everyone posted as the next week or so goes and then as everything develops. Thanks for all the thoughts, prayers and support. Hey everyone - our daughter will be undergoing her 2nd surgery here in a week -- Nov 24th.They will be removing the rest of the c-toma .....and if it isn't too aggressive again they will reconstruct with titanium. Just seeing how most kids react to the 2nd surgery, does it effect them with the titanium?also how long are they usually down? lets see, ....Is the surgery as long or is it longer than the initial removal? She was in for over 3 hrs the first time...was very aggressive and almost to the brain - dr was shocked b/c it was hiding and he didn't think it was that bad when he first got in there, wasn't until he got into the surgery he found how aggressive it was. anyway, if anyone that has went through this can give some idea on what to expect with this 2nd surgery that would be great.thank you------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 3 weeks will go by fast!!! Ah yes, Hailey over did it tonight. I kept trying to keep her down, but she doesn't want to listen. She said she hurts a bit more tonight than last night. I am just telling school and everyone we need to watch her. So with help I hope! Unfortunatly, she's still in preschool! She doesn't get that you have to calm down. She actually just turned 5 on the 13th of November. So she's a young 5. Nice thing is since she's in preschool she won't miss as much school. We'll be thinking of you! Hope everyone has a wonderful Thanksgiving Hey everyone - our daughter will be undergoing her 2nd surgery here in a week -- Nov 24th.They will be removing the rest of the c-toma .....and if it isn't too aggressive again they will reconstruct with titanium.Just seeing how most kids react to the 2nd surgery, does it effect them with the titanium?also how long are they usually down? lets see, ....Is the surgery as long or is it longer than the initial removal? She was in for over 3 hrs the first time...was very aggressive and almost to the brain - dr was shocked b/c it was hiding and he didn't think it was that bad when he first got in there, wasn't until he got into the surgery he found how aggressive it was.anyway, if anyone that has went through this can give some idea on what to expect with this 2nd surgery that would be great.thank you------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 My son has a head that is flat as a board on the back. The top of his head is shaped sooo weird.. he cant even wear his skating helmet. I was told when he was 8 months when i noticed it that it would correct itself. Hes now 5 and it hasnt changed and i worry.. HELP?> Quote Link to comment Share on other sites More sharing options...
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