Re: Chloe update

[Guest guest]

Glad to know it all went well!

From: s <thequeen.christine@...>cholesteatoma Sent: Wed, May 26, 2010 7:37:57 PMSubject: Chloe update

Hi!

Chloe is done, but still napping. The surgery was 3 hours, which is always a good sign! There was no regrowth in any of the former trouble spots. This actually was probably a new aquired ctoma resulting from a portion of a previous graft that healed a little funny and was cut off from the ventilation tube. This area retracted and the debris deposited there. Some was touching, but not involved with the prosthesis which was removed while the area was thoroughly cleaned, then it was replaced. It will be a few months before we know where her hearing will end up. The new graft has more cartilage in that weak spot.

On the whole, I am pretty pleased. It means we have finally gotten rid of that pesky congenital ctoma and we know what to look out for in the future. We will still continue to have her checkups and if that goes well, she may have a quick look in a year under the OR microscope. She has already had a lot of ct scans, so they are trying to avoid more.

Glad it's done again!

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[Guest guest]

Oh so glad it all seems to have gone well. Hopefully that is it and it is all gone.Cheers  From: s <thequeen.christine@...>Subject: Chloe updatecholesteatoma Received: Thursday, 27 May, 2010, 9:37 AM

 

Hi!

Chloe is done, but still napping. The surgery was 3 hours, which is always a good sign! There was no regrowth in any of the former trouble spots. This actually was probably a new aquired ctoma resulting from a portion of a previous graft that healed a little funny and was cut off from the ventilation tube. This area retracted and the debris deposited there. Some was touching, but not involved with the prosthesis which was removed while the area was thoroughly cleaned, then it was replaced. It will be a few months before we know where her hearing will end up. The new graft has more cartilage in that weak spot.

 

On the whole, I am pretty pleased. It means we have finally gotten rid of that pesky congenital ctoma and we know what to look out for in the future. We will still continue to have her checkups and if that goes well, she may have a quick look in a year under the OR microscope. She has already had a lot of ct scans, so they are trying to avoid more.

 

Glad it's done again!

 

 

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[Guest guest]

.

Greatt news

Dr. Gupta Arun, ENT Surgeon,India

On Thu, May 27, 2010 at 5:07 AM, s <thequeen.christine@...> wrote:

 

Hi!

Chloe is done, but still napping. The surgery was 3 hours, which is always a good sign! There was no regrowth in any of the former trouble spots. This actually was probably a new aquired ctoma resulting from a portion of a previous graft that healed a little funny and was cut off from the ventilation tube. This area retracted and the debris deposited there. Some was touching, but not involved with the prosthesis which was removed while the area was thoroughly cleaned, then it was replaced. It will be a few months before we know where her hearing will end up. The new graft has more cartilage in that weak spot.

 

On the whole, I am pretty pleased. It means we have finally gotten rid of that pesky congenital ctoma and we know what to look out for in the future. We will still continue to have her checkups and if that goes well, she may have a quick look in a year under the OR microscope. She has already had a lot of ct scans, so they are trying to avoid more.

 

Glad it's done again!

 

 

------------------------------------

[Guest guest]

What wonderful news that Chloe is doing well!!

Chloe update

> Hi!

>

Chloe is done, but still napping. The surgery was 3 hours, which is always a

good sign! There was no regrowth in any of the former trouble spots. This

actually was probably a new aquired ctoma resulting from a portion of a

previous graft that healed a little funny and was cut off from the

ventilation tube. This area retracted and the debris deposited there. Some

was touching, but not involved with the prosthesis which was removed while

the area was thoroughly cleaned, then it was replaced. It will be a few

months before we know where her hearing will end up. The new graft has more

cartilage in that weak spot.

On the whole, I am pretty pleased. It means we have finally gotten rid of

that pesky congenital ctoma and we know what to look out for in the future.

We will still continue to have her checkups and if that goes well, she may

have a quick look in a year under the OR microscope. She has already had a

lot of ct scans, so they are trying to avoid more.

Glad it's done again!

Ch

[Guest guest]

So happy things went well! Keep us posted. I will continue to pray. NimmonsSent from my Verizon Wireless BlackBerryFrom: s <jack_lukesmum@...>Date: Wed, 26 May 2010 17:36:12 -0700 (PDT)<cholesteatoma >Subject: Re: Chloe update Oh so glad it all seems to have gone well. Hopefully that is it and it is all gone.Cheers  From: s <thequeen.christinegmail>Subject: Chloe updatecholesteatoma Received: Thursday, 27 May, 2010, 9:37 AM Hi!Chloe is done, but still napping. The surgery was 3 hours, which is always a good sign! There was no regrowth in any of the former trouble spots. This actually was probably a new aquired ctoma resulting from a portion of a previous graft that healed a little funny and was cut off from the ventilation tube. This area retracted and the debris deposited there. Some was touching, but not involved with the prosthesis which was removed while the area was thoroughly cleaned, then it was replaced. It will be a few months before we know where her hearing will end up. The new graft has more cartilage in that weak spot. On the whole, I am pretty pleased. It means we have finally gotten rid of that pesky congenital ctoma and we know what to look out for in the future. We will still continue to have her checkups and if that goes well, she may have a quick look in a year under the OR microscope. She has already had a lot of ct scans, so they are trying to avoid more.  Glad it's done again!  ------------ --------- --------- ------

[Guest guest]

I will pray for little Chloe. God Bless, Nimmons Sent from my Verizon Wireless BlackBerryFrom: s <thequeen.christine@...>Sender: cholesteatoma Date: Fri, 10 Jun 2011 11:19:10 -0400<cholesteatoma >Reply cholesteatoma Subject: Chloe update Chloe has been in surgery for three hours now, and the dr just switched to a CWD. She has a lot of regrowth, and much of the canal wall is eroded anyway. Hopefully, this will make it harder for the thing to grow back. This is her 14th surgery. We are very happy with our surgeon. Her case has just been unusually difficult. Encouraged by so many people having good results from this procedure!On Thu, Jun 9, 2011 at 7:41 PM, Jenni <moonshadow2447@...> wrote:Hi ,I had surgery after 16 yrs. 3 actually. One being a CWD in September 2010. I haven't had many issues. I just had surgery again in April this year to remove a new growth and I didn't have any pain post op. I actually called and asked the surgeon if he did anything post op because I couldn't feel pain like I had in previous surgeries. I am not a big fan of water I do enjoy boating so having this procedure for me over having an ear that was not safe was a no brainer for me. I do keep my ear dry and people who look at my ear say they can't really notice anything different unless they look at my left side then my right side to compare. I haven't noticed many changes other than keeping it dry. Cleanings are better although the cold air does make me dizzy sometimes but nothing like before which is strange but I won't question it. When is your surgery? Taking the canal wall down will also help keep ctoma's from hiding back behind the wall (something mine did) so your chances of recurrance are even lower.JenniOn Thu, Jun 9, 2011 at 2:53 PM, <jules-07@...> wrote: Hello group. I had my first CWU procedure for cholesteatoma in 1999.  The ear surgeon said it was large and damaged one of the hearing bones.  The surgery went well.  While I was recovering, I caught a bad infection in the ear (I caught a bad cold that was going around) that would not heal and needed a second op (CWU) 6 months later.  It's been a tricky, long road with my poor left ear.  The doctor said my ear canal is widening on its own but it's not being controlled.  I'm 44 years old now.  The ear dr. sent me for a ct scan a few weeks ago and he says the cholesteatoma is back!  He wants to do a Canal Wall Down and I'm pretty scared.  He said my eustacian tube is not working.  I've had the same ear doctor all along.  I live in N.Y. and had the surgeries in Manhattan.  The ear doctor is head of many departments, is qualified (accepts my insurance) and my ear looks very normal on theoutside...He said the CWD is actually an easier surgery.  This doctor told me years ago that I'm his one " problem patient. "   I guess all his other patients recover fully with no problems??  I felt so awful when he said that. I'm a respectful, quiet person who keeps her appointments. I never needed any other surgeries in my life and like the rest of us, never, ever, expected to grow an invasive ear tumor that I've never heard of before. I hate having to go through all this again 11 years later....He said the outcome would be similiar to what I'm doing now - office visits every 6 months, keep water out, etc.  Any advice?  Thank you - .

[Guest guest]

Wow!!!!

Good Luck!

Brad

Hello group.

I had my first CWU procedure for cholesteatoma in 1999. The ear surgeon said it was large and damaged one of the hearing bones. The surgery went well. While I was recovering, I caught a bad infection in the ear (I caught a bad cold that was going around) that would not heal and needed a second op (CWU) 6 months later. It's been a tricky, long road with my poor left ear. The doctor said my ear canal is widening on its own but it's not being controlled. I'm 44 years old now. The ear dr. sent me for a ct scan a few weeks ago and he says the cholesteatoma is back! He wants to do a Canal Wall Down and I'm pretty scared. He said my eustacian tube is not working. I've had the same ear doctor all along. I live in N.Y. and had the surgeries in Manhattan. The ear doctor is head of many departments, is qualified (accepts my insurance) and my ear looks very normal on the

outside...He said the CWD is actually an easier surgery. This doctor told me years ago that I'm his one "problem patient." I guess all his other patients recover fully with no problems?? I felt so awful when he said that. I'm a respectful, quiet person who keeps her appointments. I never needed any other surgeries in my life and like the rest of us, never, ever, expected to grow an invasive ear tumor that I've never heard of before.

I hate having to go through all this again 11 years later....He said the outcome would be similiar to what I'm doing now - office visits every 6 months, keep water out, etc. Any advice? Thank you - .

[Guest guest]

Hope her surgery goes well! 14 surgeries - poor girl..

From: s <thequeen.christine@...>cholesteatoma Sent: Fri, June 10, 2011 11:19:10 AMSubject: Chloe update

Chloe has been in surgery for three hours now, and the dr just switched to a CWD. She has a lot of regrowth, and much of the canal wall is eroded anyway. Hopefully, this will make it harder for the thing to grow back. This is her 14th surgery. We are very happy with our surgeon. Her case has just been unusually difficult. Encouraged by so many people having good results from this procedure!

On Thu, Jun 9, 2011 at 7:41 PM, Jenni <moonshadow2447@...> wrote:

Hi ,

I had surgery after 16 yrs. 3 actually. One being a CWD in September 2010. I haven't had many issues. I just had surgery again in April this year to remove a new growth and I didn't have any pain post op. I actually called and asked the surgeon if he did anything post op because I couldn't feel pain like I had in previous surgeries. I am not a big fan of water I do enjoy boating so having this procedure for me over having an ear that was not safe was a no brainer for me. I do keep my ear dry and people who look at my ear say they can't really notice anything different unless they look at my left side then my right side to compare. I haven't noticed many changes other than keeping it dry. Cleanings are better although the cold air does make me dizzy sometimes but nothing like before which is strange but I won't question it. When is your surgery? Taking the canal wall down will also help keep ctoma's from hiding back behind the wall (something mine

did) so your chances of recurrance are even lower.

Jenni

On Thu, Jun 9, 2011 at 2:53 PM, <jules-07@...> wrote:

Hello group.

I had my first CWU procedure for cholesteatoma in 1999. The ear surgeon said it was large and damaged one of the hearing bones. The surgery went well. While I was recovering, I caught a bad infection in the ear (I caught a bad cold that was going around) that would not heal and needed a second op (CWU) 6 months later. It's been a tricky, long road with my poor left ear. The doctor said my ear canal is widening on its own but it's not being controlled. I'm 44 years old now. The ear dr. sent me for a ct scan a few weeks ago and he says the cholesteatoma is back! He wants to do a Canal Wall Down and I'm pretty scared. He said my eustacian tube is not working. I've had the same ear doctor all along. I live in N.Y. and had the surgeries in Manhattan. The ear doctor is head of many departments, is qualified (accepts my insurance) and my ear looks very normal on the

outside...He said the CWD is actually an easier surgery. This doctor told me years ago that I'm his one "problem patient." I guess all his other patients recover fully with no problems?? I felt so awful when he said that. I'm a respectful, quiet person who keeps her appointments. I never needed any other surgeries in my life and like the rest of us, never, ever, expected to grow an invasive ear tumor that I've never heard of before.

I hate having to go through all this again 11 years later....He said the outcome would be similiar to what I'm doing now - office visits every 6 months, keep water out, etc. Any advice? Thank you - .

[Guest guest]

Seven hours of surgery, but other than vomiting whenever her eyes are open, she is doing great! Glad to be done this one, and hoping it does the job.   On Fri, Jun 10, 2011 at 3:48 PM, <jules-07@...> wrote:

Hope her surgery goes well!  14 surgeries - poor girl..

From: s <thequeen.christine@...>cholesteatoma

Sent: Fri, June 10, 2011 11:19:10 AMSubject: Chloe update 

Chloe has been in surgery for three hours now, and the dr just switched to a CWD. She has a lot of regrowth, and much of the canal wall is eroded anyway. Hopefully, this will make it harder for the thing to grow back. This is her 14th surgery. We are very happy with our surgeon. Her case has just been unusually difficult. Encouraged by so many people having good results from this procedure!

On Thu, Jun 9, 2011 at 7:41 PM, Jenni <moonshadow2447@...> wrote:

Hi ,

I had surgery after 16 yrs. 3 actually. One being a CWD in September 2010. I haven't had many issues. I just had surgery again in April this year to remove a new growth and I didn't have any pain post op. I actually called and asked the surgeon if he did anything post op because I couldn't feel pain like I had in previous surgeries. I am not a big fan of water I do enjoy boating so having this procedure for me over having an ear that was not safe was a no brainer for me. I do keep my ear dry and people who look at my ear say they can't really notice anything different unless they look at my left side then my right side to compare. I haven't noticed many changes other than keeping it dry. Cleanings are better although the cold air does make me dizzy sometimes but nothing like before which is strange but I won't question it. When is your surgery? Taking the canal wall down will also help keep ctoma's from hiding back behind the wall (something mine

did) so your chances of recurrance are even lower.

Jenni

On Thu, Jun 9, 2011 at 2:53 PM, <jules-07@...> wrote:

 

Hello group.

 

I had my first CWU procedure for cholesteatoma in 1999.  The ear surgeon said it was large and damaged one of the hearing bones.  The surgery went well.  While I was recovering, I caught a bad infection in the ear (I caught a bad cold that was going around) that would not heal and needed a second op (CWU) 6 months later.  It's been a tricky, long road with my poor left ear.  The doctor said my ear canal is widening on its own but it's not being controlled.  I'm 44 years old now.  The ear dr. sent me for a ct scan a few weeks ago and he says the cholesteatoma is back!  He wants to do a Canal Wall Down and I'm pretty scared.  He said my eustacian tube is not working.  I've had the same ear doctor all along.  I live in N.Y. and had the surgeries in Manhattan.  The ear doctor is head of many departments, is qualified (accepts my insurance) and my ear looks very normal on the

outside...He said the CWD is actually an easier surgery.  This doctor told me years ago that I'm his one " problem patient. "   I guess all his other patients recover fully with no problems??  I felt so awful when he said that. I'm a respectful, quiet person who keeps her appointments. I never needed any other surgeries in my life and like the rest of us, never, ever, expected to grow an invasive ear tumor that I've never heard of before.

 

I hate having to go through all this again 11 years later....He said the outcome would be similiar to what I'm doing now - office visits every 6 months, keep water out, etc.  Any advice?  Thank you - .

[Guest guest]

If anything, I wish we would have done the CWD earlier on JinMei. She had her

2nd one last week & then they found ersosion to the degree that we are looking

at a Radical Mastoidectomy. I can't help but wonder if things wouldn't have

gotten that far if we would have done a CWD earlier. JinMei has had 10 surgeries

on her ears but I think 19 over-all including her cleft palate issues.

If this is Chloe's first CWD, be prepared for the gaping hole in her ear. I was

not prepared at all the first time. We just had the packing taken out of the

latest one on Wednesday & it was pretty impressive. 8-9 sponges in one ear.

GROSS! Wish I would have gotten a picture. Can't believe they all fit in there.

I'll be praying for Chloe. JinMei had troubles this time with nausea as well. I

wish I had remembered I was going to try mints this time. Can't hurt.

Donna DeBoer

[Guest guest]

She didn't get the sponges. The Fellow who assisted told me this morning that

what he put in was like a tampon. That's a great mental image, huh? There's a

little string to pull it out next week. If she happens to pull it then we have

to rush back in to repack it.

On Jun 10, 2011, at 22:22, " Donna " <Donna_is@...> wrote:

> If anything, I wish we would have done the CWD earlier on JinMei. She had her

2nd one last week & then they found ersosion to the degree that we are looking

at a Radical Mastoidectomy. I can't help but wonder if things wouldn't have

gotten that far if we would have done a CWD earlier. JinMei has had 10 surgeries

on her ears but I think 19 over-all including her cleft palate issues.

>

> If this is Chloe's first CWD, be prepared for the gaping hole in her ear. I

was not prepared at all the first time. We just had the packing taken out of

the latest one on Wednesday & it was pretty impressive. 8-9 sponges in one ear.

GROSS! Wish I would have gotten a picture. Can't believe they all fit in there.

>

> I'll be praying for Chloe. JinMei had troubles this time with nausea as well.

I wish I had remembered I was going to try mints this time. Can't hurt.

> Donna DeBoer

>

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[Guest guest]

YIKES!

Donna DeBoer

>

> > If anything, I wish we would have done the CWD earlier on JinMei. She had

her 2nd one last week & then they found ersosion to the degree that we are

looking at a Radical Mastoidectomy. I can't help but wonder if things wouldn't

have gotten that far if we would have done a CWD earlier. JinMei has had 10

surgeries on her ears but I think 19 over-all including her cleft palate issues.

> >

> > If this is Chloe's first CWD, be prepared for the gaping hole in her ear. I

was not prepared at all the first time. We just had the packing taken out of

the latest one on Wednesday & it was pretty impressive. 8-9 sponges in one ear.

GROSS! Wish I would have gotten a picture. Can't believe they all fit in there.

> >

> > I'll be praying for Chloe. JinMei had troubles this time with nausea as

well. I wish I had remembered I was going to try mints this time. Can't hurt.

> > Donna DeBoer

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