Re: Another cholesteatoma surgery

[Guest guest]

May be she has developed fistula with inner ear, which help to maintain body balance

Arun

On 10/8/08, lagiessi <lagiessi@...> wrote:

Hey. This is my first time writing to you guys. I am so worried about my daughter's upcoming fourth surgery for a right ear cholesteatoma. She is nine and had her first surgery at the age of 6, years after her

PE tubes fell out. I just wonder (and gather) if she is going to need surgery for the rest of her life. This time she just has a bad perforation of the eardrum that won't get better, but no cholesteatoma per CT scan. I don't understand then, why she has all the symptoms of

cholesteatoma, but the doc says he doesn't see one as of yet. In the last two months, she's had lots of headaches, tinnitus, dizziness, nasty,smelly, thick dark yellow/grey drainage. We also just cleared up

a nasty black fungal infection. Can anyone explain why this keeps happening-the symptoms and why she must keep enduring such a painful surgery? Please help me make some sense of this.

[Guest guest]

It's hard to watch as a mom. Chloe had her tenth surgery in July and her elevnth is scheduled for December 17.

Sometimes ctoma is too small to be seen easily on a ct scan. We had this happen in April when the scan showed no ctoma, but there actually was a small amount on the eardrum when he went in to repair the hole. This was involved with the prosthesis, which had to be replaced as well. She ended up getting a complete TM graft instead of a repair, but the recovery was similar.

She actually had some post op complications, because there was a small amount in the mastoid, also not visible on the scan that became infected two months after surgery and caused a rapid regrowth of ctoma that filled her mastoid and middle ear. This is very uncommon, and she is doing very well now.

You may not have any ctoma, and just have some infection issues, but it is really hard to tell without just doing the surgery.

As long as you are calm, she will be, too. I know how you feel, though, and once emailed our surgeon to ask why this was so hard!

On 10/8/08, Arun Gupta <drarunjind@...> wrote:

May be she has developed fistula with inner ear, which help to maintain body balance

Arun

On 10/8/08, lagiessi <lagiessi@...> wrote:

Hey. This is my first time writing to you guys. I am so worried about my daughter's upcoming fourth surgery for a right ear cholesteatoma. She is nine and had her first surgery at the age of 6, years after her

PE tubes fell out. I just wonder (and gather) if she is going to need surgery for the rest of her life. This time she just has a bad perforation of the eardrum that won't get better, but no cholesteatoma per CT scan. I don't understand then, why she has all the symptoms of

cholesteatoma, but the doc says he doesn't see one as of yet. In the last two months, she's had lots of headaches, tinnitus, dizziness, nasty,smelly, thick dark yellow/grey drainage. We also just cleared up

a nasty black fungal infection. Can anyone explain why this keeps happening-the symptoms and why she must keep enduring such a painful surgery? Please help me make some sense of this.

[Guest guest]

Thank you for your reply. It makes it a bit easier to hear from someone who understands. She has, by the way, had 3 grafts so far. I know there is no way to get out of having another surgery, I just wish it would go away! She is a tough cookie and still is on the A honor roll in school and plays violin beautifully. Thanks for reminding me to stay calm, at least around her.

Hey. This is my first time writing to you guys. I am so worried about my daughter's upcoming fourth surgery for a right ear cholesteatoma. She is nine and had her first surgery at the age of 6, years after her PE tubes fell out. I just wonder (and gather) if she is going to need surgery for the rest of her life. This time she just has a bad perforation of the eardrum that won't get better, but no cholesteatoma per CT scan. I don't understand then, why she has all the symptoms of cholesteatoma, but the doc says he doesn't see one as of yet. In the last two months, she's had lots of headaches, tinnitus, dizziness, nasty,smelly, thick dark yellow/grey drainage. We also just cleared up a nasty black fungal infection. Can anyone explain why this keeps happening-the symptoms and why she must keep enduring such a painful surgery? Please help me make some sense of this.

[Guest guest]

Hey. I am a nurse, but I never thought of that. It's a whole different ball game when it's your own kid. Have you had experience with that happening? Wouldn't a fistula show up on CT scan?

Hey. This is my first time writing to you guys. I am so worried about my daughter's upcoming fourth surgery for a right ear cholesteatoma. She is nine and had her first surgery at the age of 6, years after her PE tubes fell out. I just wonder (and gather) if she is going to need surgery for the rest of her life. This time she just has a bad perforation of the eardrum that won't get better, but no cholesteatoma per CT scan. I don't understand then, why she has all the symptoms of cholesteatoma, but the doc says he doesn't see one as of yet. In the last two months, she's had lots of headaches, tinnitus, dizziness, nasty,smelly, thick dark yellow/grey drainage. We also just cleared up a nasty black fungal infection. Can anyone explain why this keeps happening-the symptoms and why she must keep enduring such a painful surgery? Please help me make some sense of this.

[Guest guest]

I discussed what I'd heard about children and cholesteatoma with my

doctor and he indicated that problems are often worse for children

because their Eustachian tubes function even worse than they will as

adults. As their body matures, I sure hope they kind of grow out of

things. They also have even smaller spaces to deal with and that can

make detection more difficult.

I think mentioned this on a recent post, but once you have one

problem with this stuff, you have to keep after it with checkups.

Please instill in your child the necessity of regular visits to their

doctor. I see too many stories from folks that had this as a kid and

then stopped having it looked after - only to have more complicated

situations later in life that should have been caught earlier.

Matt

s wrote:

> It's hard to watch as a mom. Chloe had her tenth surgery in July and

> her elevnth is scheduled for December 17.

>

> Sometimes ctoma is too small to be seen easily on a ct scan. We had

> this happen in April when the scan showed no ctoma, but there actually

> was a small amount on the eardrum when he went in to repair the hole.

> This was involved with the prosthesis, which had to be replaced as

> well. She ended up getting a complete TM graft instead of a repair,

> but the recovery was similar.

>

> She actually had some post op complications, because there was a small

> amount in the mastoid, also not visible on the scan that became

> infected two months after surgery and caused a rapid regrowth of ctoma

> that filled her mastoid and middle ear. This is very uncommon, and she

> is doing very well now.

>

> You may not have any ctoma, and just have some infection issues, but

> it is really hard to tell without just doing the surgery.

>

> As long as you are calm, she will be, too. I know how you feel,

> though, and once emailed our surgeon to ask why this was so hard!

>

> On 10/8/08, *Arun Gupta* <drarunjind@...

> <mailto:drarunjind@...>> wrote:

>

> May be she has developed fistula with inner ear, which help to

> maintain body balance

> Arun

>

>

> On 10/8/08, *lagiessi* <lagiessi@...

> <mailto:lagiessi@...>> wrote:

>

> Hey. This is my first time writing to you guys. I am so

> worried about

> my daughter's upcoming fourth surgery for a right ear

> cholesteatoma.

> She is nine and had her first surgery at the age of 6, years

> after her

> PE tubes fell out. I just wonder (and gather) if she is going

> to need

> surgery for the rest of her life. This time she just has a bad

> perforation of the eardrum that won't get better, but no

> cholesteatoma

> per CT scan. I don't understand then, why she has all the

> symptoms of

> cholesteatoma, but the doc says he doesn't see one as of yet.

> In the

> last two months, she's had lots of headaches, tinnitus,

> dizziness,

> nasty,smelly, thick dark yellow/grey drainage. We also just

> cleared up

> a nasty black fungal infection. Can anyone explain why this keeps

> happening-the symptoms and why she must keep enduring such a

> painful

> surgery? Please help me make some sense of this.

>

>

>

>

--

[Guest guest]

Thanks,Matt. I hope it gets better. We do follow up every 6 months. I never have a problem getting her to go since we make an outting out of it and have lunch after!--- On Wed, 10/8/08,

[Guest guest]

,

Chloe plays violin, too! We also have lots of fun after her appointments in Boston.

She did have some erosion of the lateral semicircular canal, but it was not all the way through to a fistula. That may or may not show up on a scan, but your doc should see it in surgery. Let him know if she starts to have new balance problems or if her eyes show " nystagmus " which is sort of a rapid twitching or shaing. Chloe had this for several months, but I did not know it was related to her ears. I made an appt with the opthalmologist instead.

Her surgeon covered the area with fascia and she has been fine ever since.

We've had a bunch of grafts, too, but this one seems ok so far.

When is your surgery?

On 10/8/08, lauren giessinger <lagiessi@...> wrote:

Thanks,Matt. I hope it gets better. We do follow up every 6 months. I never have a problem getting her to go since we make an outting out of it and have lunch after!--- On Wed, 10/8/08,

[Guest guest]

Hey . That's so cool. Seems we have some things in common. Too bad we're so far away. We're all the way in Slidell, LA,just outside of New Orleans where we are from. Anyway, her surgery is Oct.23. I'm pretty sure she has more going on inside her ear than showed up on CT scan. She has this nasty, thick, foul smelling drainage in her ear and she has been complaining about her right eye " hurting inside". She wears glasses, too. How old is Chloe?

Thanks,Matt. I hope it gets better. We do follow up every 6 months. I never have a problem getting her to go since we make an outting out of it and have lunch after!--- On Wed, 10/8/08,

[Guest guest]

Chloe is five and had her first surgery at age two. If you told me then what was ahead for us, I would have been terrified, but we have always taken each day with its challenges. We have a very conservative surgeon who keeps a close eye on her.

Your surgery is coming up, so that must be heavy right now. Does she have the ossicular replacement chain? If she is not getting any of that sort of reconstruction, she should probably feel well enough to trick or treat. Might be fun to work on a cool costume while recovering. I always find it helps us to think of the fun things on " the other side " of surgery! Not so much time to dwell on the yucky stuff that way! Since Chloe is having hers a week before Christmas, with a planned ossicular chain reconstruction, which requires less activity, we are planning a Pajama Day Christmas for the whole family.

As far as having surgery forever, it may not be needed, but she should always have those yearly checkups with a good specialist, and make sure to call if anything seems odd. Matt is right that some of the issues may get better with age, and pediatric ctoma is typically more aggressive than adult.

We will be thinking of you all on the 23rd! We've spent many hours in the family waiting room, although they usually send us to the cafeteria with a pager for the first hour or so. Now I insist on spending the night, so we have a room to wait in. That helps me in planning since she has been in the recovery room until eight or nine pm several times. I also like seeing the surgeon in the am before we trek 45 miles back from Boston! Her surgeon has been great about this. Have I mentioned how very much we love him?

Blessings to you! Can't wait to hear a good post op report!

On Fri, Oct 10, 2008 at 9:15 PM, lauren giessinger <lagiessi@...> wrote:

Hey . That's so cool. Seems we have some things in common. Too bad we're so far away. We're all the way in Slidell, LA,just outside of New Orleans where we are from. Anyway, her surgery is Oct.23. I'm pretty sure she has more going on inside her ear than showed up on CT scan. She has this nasty, thick, foul smelling drainage in her ear and she has been complaining about her right eye " hurting inside " . She wears glasses, too. How old is Chloe?

Thanks,Matt. I hope it gets better. We do follow up every 6 months. I never have a problem getting her to go since we make an outting out of it and have lunch after!--- On Wed, 10/8/08,

[Guest guest]

I love her idea. Tell the nurses at the hospital, and I bet they will make sure she has lots of gauze and other cool dr stuff! I know MEEI sends us home with more supplies for Chloe's dr kit every time. She even has one of those " glasscock " dressings--the thing that they put over her ear after surgeries. She likes to perform ear surgery on anyone who will sit still for two minutes. She has her own dr badge, too. One of those nice blue surgical caps will cover up any incision/ packing, too! (Don't forget the fabulous blue booties to match!)

Are they definitely going in from behind the ear? Sometimes if it's not too hard to get at and is small, they can get it from the canal. Our Dr. checks that first in each surgery, but hers has always been too " suspicious " and had to have the postauricular incision.

One quick thing to ask about is " T tubes " . They stay in much longer (three to five years) and will help prevent another perforation, if your doc thinks it is the best thing for her. Chloe had a persistent perforation from Dec 05 to April 08, but the graft in April (a complete graft vs. the usual patch grafts of previous surgeries), and subsequent t tube mean no perf so far. She had it repaired numerous times before this.

I wish you guys the best outcome!

On 10/11/08, lauren giessinger <lagiessi@...> wrote:

Her ossicular chain is stiil in tact. We seem to have caught the cholesteatomas early each time, so she's not had much damage, thank God. Thanks for the post op fun tip. Gabby wants to be a scary doctor for halloween, so that would be a good time to decorate some scrubs for her costume. Your Pajama Party Christmas sounds great. I'm sure I'll think of you guys on Christmas day. Keep in touch. I'll keep you posted.

Thanks,Matt. I hope it gets better. We do follow up every 6 months. I never have a problem getting her to go since we make an outting out of it and have lunch after!--- On Wed, 10/8/08,

[Guest guest]

Hi! I recently had surgery and the doctor put a stint in my inner ear to prevent my ear drum from retracting back/negative pressure and to stop the development of another cholesteatoma. Will see if this works over time.

Re: Another cholesteatoma surgery

Hey , we never got any kind of kit from the hospital and I thought they were so great. I didn't ask either. I am a med/surg nurse so I get stuff from the hospital if I need it(don't tell). Maybe I will ask this time. The nurses are wonderful. Yes, the do have to go behind the ear. The first two surgeries were thru the canal, but the last one and this one doc feels need to go post for ease of exploration and to clean it out better. She had an 80% perf last time and a graft that lasted 8 months (longer than other two). I did wonder if they could put a tube in the graft. Can they do that? It would make sense that this would be a good idea to prevent negative pressure issues. I'm going to call the doc's nurse tomorrow. Oh, wanted to tell you incase you may be interested, Gabby also takes karate. I think it helps with her balance problems and her self esteem. She's really good at it. She's testing for her purple belt tomorrow.

Thanks,Matt. I hope it gets better. We do follow up every 6 months. I never have a problem getting her to go since we make an outting out of it and have lunch after!--- On Wed, 10/8/08,

[Guest guest]

When he did the complete graft, he waited a little while before putting in the tube, no big deal, 15 minute procedure. When ear drum has been patched in the past, he put the tube right in during that surgery.

Chloe takes ballet. She is a mouse and a peppermint in the Nutcracker the week before her surgery. She has ahd two ossicular replacements, though, and is headed for a third. These require long periods of restricted activity, so no fun sports or dance. She can sew really well and made several outfits this summer--not too many five year olds doing that.

On 10/12/08, lauren giessinger <lagiessi@...> wrote:

Hey , we never got any kind of kit from the hospital and I thought they were so great. I didn't ask either. I am a med/surg nurse so I get stuff from the hospital if I need it(don't tell). Maybe I will ask this time. The nurses are wonderful. Yes, the do have to go behind the ear. The first two surgeries were thru the canal, but the last one and this one doc feels need to go post for ease of exploration and to clean it out better. She had an 80% perf last time and a graft that lasted 8 months (longer than other two). I did wonder if they could put a tube in the graft. Can they do that? It would make sense that this would be a good idea to prevent negative pressure issues. I'm going to call the doc's nurse tomorrow. Oh, wanted to tell you incase you may be interested, Gabby also takes karate. I think it helps with her balance problems and her self esteem. She's really good at it. She's testing for her purple belt tomorrow.

Thanks,Matt. I hope it gets better. We do follow up every 6 months. I never have a problem getting her to go since we make an outting out of it and have lunch after!--- On Wed, 10/8/08,

[Guest guest]

Wow. She sounds like an awesome little girl. Such serious surgeries for such a young girl. Was her first cholesteatoma large? I think you said that already. I think the way they deal with it depends alot on how we deal with it. You sound like a great mom. I didn't get to call the doc today, but I will to ask about the tubes. I don't know why it was never mentioned.

Thanks,Matt. I hope it gets better. We do follow up every 6 months. I never have a problem getting her to go since we make an outting out of it and have lunch after!--- On Wed, 10/8/08,

[Guest guest]

When I asked her surgeon after the first surgery how big it was. He said it was huge and his eyes got big, but then he said, well of course he was looking through a microscope the whole time, and that the whole area is only the size of a large grape. Hers pretty much filled the middle ear and mastoid cavity.

She's really enjoying her break from surgeries!

On 10/13/08, lauren giessinger <lagiessi@...> wrote:

Wow. She sounds like an awesome little girl. Such serious surgeries for such a young girl. Was her first cholesteatoma large? I think you said that already. I think the way they deal with it depends alot on how we deal with it. You sound like a great mom. I didn't get to call the doc today, but I will to ask about the tubes. I don't know why it was never mentioned.

Thanks,Matt. I hope it gets better. We do follow up every 6 months. I never have a problem getting her to go since we make an outting out of it and have lunch after!--- On Wed, 10/8/08,

[Guest guest]

If she should ever have to have surgery again ask for pictures. My surgeon took pictures and gave us a copy of exactly what the cholesteatoma looked like/its location in the inner ear and a picture of the installed stint he put in to keep the eardrum from retracting.

Re: Another cholesteatoma surgery

When I asked her surgeon after the first surgery how big it was. He said it was huge and his eyes got big, but then he said, well of course he was looking through a microscope the whole time, and that the whole area is only the size of a large grape. Hers pretty much filled the middle ear and mastoid cavity.

She's really enjoying her break from surgeries!

On 10/13/08, lauren giessinger <lagiessi (DOT) com> wrote:

Wow. She sounds like an awesome little girl. Such serious surgeries for such a young girl. Was her first cholesteatoma large? I think you said that already. I think the way they deal with it depends alot on how we deal with it. You sound like a great mom. I didn't get to call the doc today, but I will to ask about the tubes. I don't know why it was never mentioned.

Thanks,Matt. I hope it gets better. We do follow up every 6 months. I never have a problem getting her to go since we make an outting out of it and have lunch after!--- On Wed, 10/8/08,

[Guest guest]

I'm totally planning on asking for pictures. May sound gross, but I want

pics...

Pamela Waling " smile, it confuses people... "

> Thanks,Matt. I hope it gets better. We do follow up every 6

> months. I never have a problem getting her to go since we

> make an outting out of it and have lunch after!

>

> --- On Wed, 10/8/08,