Re: Five year old Chloe mastoiditis osteamyelitis afoter 7th C-toma surgery

[Guest guest]

HI, I was wondering how large the lump was on the incision initially. My son developed a small lump on the incision 3 months post op and the surgeon thought it was the way he heals. There is no drainage from it, but I thought it was strange because I never noticed it before .

Five year old Chloe mastoiditis osteamyelitis afoter 7th C-toma surgery

First, let me apologize for the length of this email. We are new to this group, and I want to acquaint anyone willing to read this with our unbelievable situation before I ask for advice. I pormise to be brief in the future.I can't believe I am just finding this group after two and a half years of going it alone! In December of 2005, I noticed some infected drainage coming from my two year old's left ear canal./ To my knowledge, she never even had one ear infection. The pediatrician said it was not too uncommon to rupture the tympanic membrane with a bad infection, which is what he thought she had. Three days later, there was granuloma growing down her ear canl, so we were referred to a specialist. He tried numerous drops, cultures, even a set of ear tubes before finally referring us in March 2006 to Dr. Keamy at the Massachusetts Eye and Ear Infirmary. A CT scan showed a large cholesteatoma which he removed by tympanoplasty with a postauricular incision. It had completely eroded the malleus and incus, and partially eroded the stapes. He removed these, leaving the stapes footplate for possible prosthesis. There was no evidence at that time of mastoid disease. This was done canal wall up.In December 2006, she went in for the second look. The majority of the mastoid was full of cholesteatoma, and he spent hours drilling it out, so there are almost no air cells remaining.In June 2007, she went back in. No cholesteatoma, so she got the prosthesis. After six weeks, her hearing was near normal, so we were thrilled. In February 2008, we did a CT scan, just to make sure all was well. It looked good, except that the prosthesis had slipped (the audiogram backed up that her conductive hearing loss was significant). Also, she had had a persistant hole in the tympanic membrane, despite numerous grafts.She went for surgery on April 9. The plan was to reposition the prosthesis and repair the membrane with fascia from the right temporalis muscle. When he went in, however, there was a small amount of cholesteatoma on the backside of the eardrum involving the prosthesis. He decided to remove the tympanic membrane completely and do a total graft. He also replaced the prosthesis with a new one, slightly longer.She was healing great. No redness, flat stitch line, no fever...Six weeks post op, we drove 100mi to my inlaws. We had just walked in the door when I kissed her and felt a huge lump behind her ear. I had never seen anything like that in the previous 7 surgeries, so I called MEEI and the resident told me to bring her in, so 100mi back to Boston. She had a postauricular abscess, which he thought could be a wound infection. He drained it with needle aspiration, applied a glasscock dressing, which I am sure you are all familiar with, and admitted her for IV antibiotics. In the morning, the swelling had not returned, so the on call surgeon sent us home with amoxycillin and the glasscock and directions to follow up on Tuesday--it was Memorial Day weekend.So, 100mi back to the inlaws for a picnic--Chloe was feeling fine. She didn't even mind the dressing. I felt a little funny, though, about a wound that looked perfect for 6 weeks suddenly swelling like that, so after the picnic, I took a peek under the dressing. The swelling had returned, so 100mi back to Boston.This time she received an incision and drain. She was admitted again and the new oncall doctor concurred that it was not likely a wound infection. He was so bothered by it that he emailed her surgeon who called the floor to ask me what was going on. It was a huge relief to know that her doctor was now involved. The diagnosis was mastoiditis. He scheduled her for surgery, but said he would probably not do a mastoidectomy just then. He was able to put a tube into the new graft and thoroughly irrigate the middle ear. He told me he suspected there was a small amount of cholesteatoma regrowth in the mastoid, but the landmarks were so obscurred that he wanted to wait a few weeks before attempting further surgery. He kept her on IV unisyn for two more days--so a total of a week in the hospital. She was discharged Friday, and by Sunday, the swelling had returned. She was readmitted, and he scheduled her for the mastoidectomy on Wednesday. He called up after about four hours to say that her entire mastoid was full of cholesteatoma, and it was also involved with several structures of the middle ear. He removed it from the mastoid and took out the prosthesis, as well. The ear was still too infected to safely complete the removal, so she is scheduled for another mastoidectomy on July 2.In the meantime, we went home Friday night. I am giving her IV Vancomycin and IV ertapenem, as well as oral diflucan (there was yeast in the cultures from the mastoid). We had a great infectious disease consult from Mass General Hospital for Children. He came by everyday of the two weeks we ended up apending at Mass Eye and Ear.I know that the surgeon did not see cholesteatoma 8 weeks ago because I had previously read his op notes. Additionally, I had seen the CT scan in February, and it is very different from the one in May! He said he has never seen anything like this where the cholesteatoma regrows so quickly. The new drugs or maybe the mastoidectomy seem to be working. There is no new swelling one week post op. Has anyone had any of these experiences!!!?

[Guest guest]

The first lump was the size of a robin's egg. When it returned, it was more like a lima bean. The thing that makes it an abscess is that you can tell there is fluid in it- you could feel it give a little when you pressed on it. Also, when the resident aspirated it, the fluid was clearly infected.

Her lump formed because she had not tubes and her eustachian tubes don't function at all, so when the mastoid became infected, the path of least resistance for the drainage was out through the skin.

Does your son have any pain when you touch it? That might be a good clue whether or not it is just scar tissue or something else.

Hope that helps,

On Thu, Jun 12, 2008 at 8:13 AM, <nels4487@...> wrote:

HI, I was wondering how large the lump was on the incision initially. My son developed a small lump on the incision 3 months post op and the surgeon thought it was the way he heals. There is no drainage from it, but I thought it was strange because I never noticed it before .

Five year old Chloe mastoiditis osteamyelitis afoter 7th C-toma surgery

First, let me apologize for the length of this email. We are new to this group, and I want to acquaint anyone willing to read this with our unbelievable situation before I ask for advice. I pormise to be brief in the future.

I can't believe I am just finding this group after two and a half years of going it alone! In December of 2005, I noticed some infected drainage coming from my two year old's left ear canal./ To my knowledge, she never even had

one ear infection. The pediatrician said it was not too uncommon to rupture the tympanic membrane with a bad infection, which is what he thought she had. Three days later, there was granuloma growing down her ear canl, so we were referred to a specialist. He tried numerous

drops, cultures, even a set of ear tubes before finally referring us in March 2006 to Dr. Keamy at the Massachusetts Eye and Ear Infirmary. A CT scan showed a large cholesteatoma which he removed by

tympanoplasty with a postauricular incision. It had completely eroded the malleus and incus, and partially eroded the stapes. He removed these, leaving the stapes footplate for possible prosthesis. There was no evidence at that time of mastoid disease. This was done canal

wall up.In December 2006, she went in for the second look. The majority of the mastoid was full of cholesteatoma, and he spent hours drilling it out, so there are almost no air cells remaining.In June 2007, she went back in. No cholesteatoma, so she got the

prosthesis. After six weeks, her hearing was near normal, so we were thrilled. In February 2008, we did a CT scan, just to make sure all was well. It looked good, except that the prosthesis had slipped (the audiogram

backed up that her conductive hearing loss was significant). Also, she had had a persistant hole in the tympanic membrane, despite numerous grafts.She went for surgery on April 9. The plan was to reposition the

prosthesis and repair the membrane with fascia from the right temporalis muscle. When he went in, however, there was a small amount of cholesteatoma on the backside of the eardrum involving the prosthesis. He decided to remove the tympanic membrane completely and

do a total graft. He also replaced the prosthesis with a new one, slightly longer.She was healing great. No redness, flat stitch line, no fever...Six weeks post op, we drove 100mi to my inlaws. We had just walked in

the door when I kissed her and felt a huge lump behind her ear. I had never seen anything like that in the previous 7 surgeries, so I called MEEI and the resident told me to bring her in, so 100mi back to Boston. She had a postauricular abscess, which he thought could be

a wound infection. He drained it with needle aspiration, applied a glasscock dressing, which I am sure you are all familiar with, and admitted her for IV antibiotics. In the morning, the swelling had not returned, so the on call surgeon sent us home with amoxycillin and

the glasscock and directions to follow up on Tuesday--it was Memorial Day weekend.So, 100mi back to the inlaws for a picnic--Chloe was feeling fine. She didn't even mind the dressing. I felt a little funny, though,

about a wound that looked perfect for 6 weeks suddenly swelling like that, so after the picnic, I took a peek under the dressing. The swelling had returned, so 100mi back to Boston.This time she received an incision and drain. She was admitted again

and the new oncall doctor concurred that it was not likely a wound infection. He was so bothered by it that he emailed her surgeon who called the floor to ask me what was going on. It was a huge relief to know that her doctor was now involved.

The diagnosis was mastoiditis. He scheduled her for surgery, but said he would probably not do a mastoidectomy just then. He was able to put a tube into the new graft and thoroughly irrigate the middle ear.

He told me he suspected there was a small amount of cholesteatoma regrowth in the mastoid, but the landmarks were so obscurred that he wanted to wait a few weeks before attempting further surgery. He kept her on IV unisyn for two more days--so a total of a week in the

hospital. She was discharged Friday, and by Sunday, the swelling had returned. She was readmitted, and he scheduled her for the mastoidectomy on Wednesday. He called up after about four hours to say that her entire

mastoid was full of cholesteatoma, and it was also involved with several structures of the middle ear. He removed it from the mastoid and took out the prosthesis, as well. The ear was still too infected to safely complete the removal, so she is scheduled for another

mastoidectomy on July 2.In the meantime, we went home Friday night. I am giving her IV Vancomycin and IV ertapenem, as well as oral diflucan (there was yeast in the cultures from the mastoid). We had a great infectious

disease consult from Mass General Hospital for Children. He came by everyday of the two weeks we ended up apending at Mass Eye and Ear.I know that the surgeon did not see cholesteatoma 8 weeks ago because

I had previously read his op notes. Additionally, I had seen the CT scan in February, and it is very different from the one in May! He said he has never seen anything like this where the cholesteatoma regrows so quickly.

The new drugs or maybe the mastoidectomy seem to be working. There is no new swelling one week post op. Has anyone had any of these experiences!!!?

[Guest guest]

Thanks for the great info, I will check his incision tonight. Your daughter must have felt awful with all the pressure in her head and mastoid.

God bless these kids!!! They are so precious.

Five year old Chloe mastoiditis osteamyelitis afoter 7th C-toma surgery

First, let me apologize for the length of this email. We are new to this group, and I want to acquaint anyone willing to read this with our unbelievable situation before I ask for advice. I pormise to be brief in the future.I can't believe I am just finding this group after two and a half years of going it alone! In December of 2005, I noticed some infected drainage coming from my two year old's left ear canal./ To my knowledge, she never even had one ear infection. The pediatrician said it was not too uncommon to rupture the tympanic membrane with a bad infection, which is what he thought she had. Three days later, there was granuloma growing down her ear canl, so we were referred to a specialist. He tried numerous drops, cultures, even a set of ear tubes before finally referring us in March 2006 to Dr. Keamy at the Massachusetts Eye and Ear Infirmary. A CT scan showed a large cholesteatoma which he removed by tympanoplasty with a postauricular incision. It had completely eroded the malleus and incus, and partially eroded the stapes. He removed these, leaving the stapes footplate for possible prosthesis. There was no evidence at that time of mastoid disease. This was done canal wall up.In December 2006, she went in for the second look. The majority of the mastoid was full of cholesteatoma, and he spent hours drilling it out, so there are almost no air cells remaining.In June 2007, she went back in. No cholesteatoma, so she got the prosthesis. After six weeks, her hearing was near normal, so we were thrilled. In February 2008, we did a CT scan, just to make sure all was well. It looked good, except that the prosthesis had slipped (the audiogram backed up that her conductive hearing loss was significant). Also, she had had a persistant hole in the tympanic membrane, despite numerous grafts.She went for surgery on April 9. The plan was to reposition the prosthesis and repair the membrane with fascia from the right temporalis muscle. When he went in, however, there was a small amount of cholesteatoma on the backside of the eardrum involving the prosthesis. He decided to remove the tympanic membrane completely and do a total graft. He also replaced the prosthesis with a new one, slightly longer.She was healing great. No redness, flat stitch line, no fever...Six weeks post op, we drove 100mi to my inlaws. We had just walked in the door when I kissed her and felt a huge lump behind her ear. I had never seen anything like that in the previous 7 surgeries, so I called MEEI and the resident told me to bring her in, so 100mi back to Boston. She had a postauricular abscess, which he thought could be a wound infection. He drained it with needle aspiration, applied a glasscock dressing, which I am sure you are all familiar with, and admitted her for IV antibiotics. In the morning, the swelling had not returned, so the on call surgeon sent us home with amoxycillin and the glasscock and directions to follow up on Tuesday--it was Memorial Day weekend.So, 100mi back to the inlaws for a picnic--Chloe was feeling fine. She didn't even mind the dressing. I felt a little funny, though, about a wound that looked perfect for 6 weeks suddenly swelling like that, so after the picnic, I took a peek under the dressing. The swelling had returned, so 100mi back to Boston.This time she received an incision and drain. She was admitted again and the new oncall doctor concurred that it was not likely a wound infection. He was so bothered by it that he emailed her surgeon who called the floor to ask me what was going on. It was a huge relief to know that her doctor was now involved. The diagnosis was mastoiditis. He scheduled her for surgery, but said he would probably not do a mastoidectomy just then. He was able to put a tube into the new graft and thoroughly irrigate the middle ear. He told me he suspected there was a small amount of cholesteatoma regrowth in the mastoid, but the landmarks were so obscurred that he wanted to wait a few weeks before attempting further surgery. He kept her on IV unisyn for two more days--so a total of a week in the hospital. She was discharged Friday, and by Sunday, the swelling had returned. She was readmitted, and he scheduled her for the mastoidectomy on Wednesday. He called up after about four hours to say that her entire mastoid was full of cholesteatoma, and it was also involved with several structures of the middle ear. He removed it from the mastoid and took out the prosthesis, as well. The ear was still too infected to safely complete the removal, so she is scheduled for another mastoidectomy on July 2.In the meantime, we went home Friday night. I am giving her IV Vancomycin and IV ertapenem, as well as oral diflucan (there was yeast in the cultures from the mastoid). We had a great infectious disease consult from Mass General Hospital for Children. He came by everyday of the two weeks we ended up apending at Mass Eye and Ear.I know that the surgeon did not see cholesteatoma 8 weeks ago because I had previously read his op notes. Additionally, I had seen the CT scan in February, and it is very different from the one in May! He said he has never seen anything like this where the cholesteatoma regrows so quickly. The new drugs or maybe the mastoidectomy seem to be working. There is no new swelling one week post op. Has anyone had any of these experiences!!!?

[Guest guest]

She is definitely feeling better now! We go back to Mass Eye and Ear tomorrow for a follow up, but we are officially 1 week with no emergencies!.

On Thu, Jun 12, 2008 at 4:55 PM, <nels4487@...> wrote:

Thanks for the great info, I will check his incision tonight. Your daughter must have felt awful with all the pressure in her head and mastoid.

God bless these kids!!! They are so precious.

Five year old Chloe mastoiditis osteamyelitis afoter 7th C-toma surgery

First, let me apologize for the length of this email. We are new to this group, and I want to acquaint anyone willing to read this with our unbelievable situation before I ask for advice. I pormise to be brief in the future.

I can't believe I am just finding this group after two and a half years of going it alone! In December of 2005, I noticed some infected drainage coming from my two year old's left ear canal./ To my knowledge, she never even had

one ear infection. The pediatrician said it was not too uncommon to rupture the tympanic membrane with a bad infection, which is what he thought she had. Three days later, there was granuloma growing down her ear canl, so we were referred to a specialist. He tried numerous

drops, cultures, even a set of ear tubes before finally referring us in March 2006 to Dr. Keamy at the Massachusetts Eye and Ear Infirmary. A CT scan showed a large cholesteatoma which he removed by

tympanoplasty with a postauricular incision. It had completely eroded the malleus and incus, and partially eroded the stapes. He removed these, leaving the stapes footplate for possible prosthesis. There was no evidence at that time of mastoid disease. This was done canal

wall up.In December 2006, she went in for the second look. The majority of the mastoid was full of cholesteatoma, and he spent hours drilling it out, so there are almost no air cells remaining.In June 2007, she went back in. No cholesteatoma, so she got the

prosthesis. After six weeks, her hearing was near normal, so we were thrilled. In February 2008, we did a CT scan, just to make sure all was well. It looked good, except that the prosthesis had slipped (the audiogram

backed up that her conductive hearing loss was significant). Also, she had had a persistant hole in the tympanic membrane, despite numerous grafts.She went for surgery on April 9. The plan was to reposition the

prosthesis and repair the membrane with fascia from the right temporalis muscle. When he went in, however, there was a small amount of cholesteatoma on the backside of the eardrum involving the prosthesis. He decided to remove the tympanic membrane completely and

do a total graft. He also replaced the prosthesis with a new one, slightly longer.She was healing great. No redness, flat stitch line, no fever...Six weeks post op, we drove 100mi to my inlaws. We had just walked in

the door when I kissed her and felt a huge lump behind her ear. I had never seen anything like that in the previous 7 surgeries, so I called MEEI and the resident told me to bring her in, so 100mi back to Boston. She had a postauricular abscess, which he thought could be

a wound infection. He drained it with needle aspiration, applied a glasscock dressing, which I am sure you are all familiar with, and admitted her for IV antibiotics. In the morning, the swelling had not returned, so the on call surgeon sent us home with amoxycillin and

the glasscock and directions to follow up on Tuesday--it was Memorial Day weekend.So, 100mi back to the inlaws for a picnic--Chloe was feeling fine. She didn't even mind the dressing. I felt a little funny, though,

about a wound that looked perfect for 6 weeks suddenly swelling like that, so after the picnic, I took a peek under the dressing. The swelling had returned, so 100mi back to Boston.This time she received an incision and drain. She was admitted again

and the new oncall doctor concurred that it was not likely a wound infection. He was so bothered by it that he emailed her surgeon who called the floor to ask me what was going on. It was a huge relief to know that her doctor was now involved.

The diagnosis was mastoiditis. He scheduled her for surgery, but said he would probably not do a mastoidectomy just then. He was able to put a tube into the new graft and thoroughly irrigate the middle ear.

He told me he suspected there was a small amount of cholesteatoma regrowth in the mastoid, but the landmarks were so obscurred that he wanted to wait a few weeks before attempting further surgery. He kept her on IV unisyn for two more days--so a total of a week in the

hospital. She was discharged Friday, and by Sunday, the swelling had returned. She was readmitted, and he scheduled her for the mastoidectomy on Wednesday. He called up after about four hours to say that her entire

mastoid was full of cholesteatoma, and it was also involved with several structures of the middle ear. He removed it from the mastoid and took out the prosthesis, as well. The ear was still too infected to safely complete the removal, so she is scheduled for another

mastoidectomy on July 2.In the meantime, we went home Friday night. I am giving her IV Vancomycin and IV ertapenem, as well as oral diflucan (there was yeast in the cultures from the mastoid). We had a great infectious

disease consult from Mass General Hospital for Children. He came by everyday of the two weeks we ended up apending at Mass Eye and Ear.I know that the surgeon did not see cholesteatoma 8 weeks ago because

I had previously read his op notes. Additionally, I had seen the CT scan in February, and it is very different from the one in May! He said he has never seen anything like this where the cholesteatoma regrows so quickly.

The new drugs or maybe the mastoidectomy seem to be working. There is no new swelling one week post op. Has anyone had any of these experiences!!!?

[Guest guest]

Good, I look forward to hearing a good report!

Five year old Chloe mastoiditis osteamyelitis afoter 7th C-toma surgery

First, let me apologize for the length of this email. We are new to this group, and I want to acquaint anyone willing to read this with our unbelievable situation before I ask for advice. I pormise to be brief in the future.I can't believe I am just finding this group after two and a half years of going it alone! In December of 2005, I noticed some infected drainage coming from my two year old's left ear canal./ To my knowledge, she never even had one ear infection. The pediatrician said it was not too uncommon to rupture the tympanic membrane with a bad infection, which is what he thought she had. Three days later, there was granuloma growing down her ear canl, so we were referred to a specialist. He tried numerous drops, cultures, even a set of ear tubes before finally referring us in March 2006 to Dr. Keamy at the Massachusetts Eye and Ear Infirmary. A CT scan showed a large cholesteatoma which he removed by tympanoplasty with a postauricular incision. It had completely eroded the malleus and incus, and partially eroded the stapes. He removed these, leaving the stapes footplate for possible prosthesis. There was no evidence at that time of mastoid disease. This was done canal wall up.In December 2006, she went in for the second look. The majority of the mastoid was full of cholesteatoma, and he spent hours drilling it out, so there are almost no air cells remaining.In June 2007, she went back in. No cholesteatoma, so she got the prosthesis. After six weeks, her hearing was near normal, so we were thrilled. In February 2008, we did a CT scan, just to make sure all was well. It looked good, except that the prosthesis had slipped (the audiogram backed up that her conductive hearing loss was significant). Also, she had had a persistant hole in the tympanic membrane, despite numerous grafts.She went for surgery on April 9. The plan was to reposition the prosthesis and repair the membrane with fascia from the right temporalis muscle. When he went in, however, there was a small amount of cholesteatoma on the backside of the eardrum involving the prosthesis. He decided to remove the tympanic membrane completely and do a total graft. He also replaced the prosthesis with a new one, slightly longer.She was healing great. No redness, flat stitch line, no fever...Six weeks post op, we drove 100mi to my inlaws. We had just walked in the door when I kissed her and felt a huge lump behind her ear. I had never seen anything like that in the previous 7 surgeries, so I called MEEI and the resident told me to bring her in, so 100mi back to Boston. She had a postauricular abscess, which he thought could be a wound infection. He drained it with needle aspiration, applied a glasscock dressing, which I am sure you are all familiar with, and admitted her for IV antibiotics. In the morning, the swelling had not returned, so the on call surgeon sent us home with amoxycillin and the glasscock and directions to follow up on Tuesday--it was Memorial Day weekend.So, 100mi back to the inlaws for a picnic--Chloe was feeling fine. She didn't even mind the dressing. I felt a little funny, though, about a wound that looked perfect for 6 weeks suddenly swelling like that, so after the picnic, I took a peek under the dressing. The swelling had returned, so 100mi back to Boston.This time she received an incision and drain. She was admitted again and the new oncall doctor concurred that it was not likely a wound infection. He was so bothered by it that he emailed her surgeon who called the floor to ask me what was going on. It was a huge relief to know that her doctor was now involved. The diagnosis was mastoiditis. He scheduled her for surgery, but said he would probably not do a mastoidectomy just then. He was able to put a tube into the new graft and thoroughly irrigate the middle ear. He told me he suspected there was a small amount of cholesteatoma regrowth in the mastoid, but the landmarks were so obscurred that he wanted to wait a few weeks before attempting further surgery. He kept her on IV unisyn for two more days--so a total of a week in the hospital. She was discharged Friday, and by Sunday, the swelling had returned. She was readmitted, and he scheduled her for the mastoidectomy on Wednesday. He called up after about four hours to say that her entire mastoid was full of cholesteatoma, and it was also involved with several structures of the middle ear. He removed it from the mastoid and took out the prosthesis, as well. The ear was still too infected to safely complete the removal, so she is scheduled for another mastoidectomy on July 2.In the meantime, we went home Friday night. I am giving her IV Vancomycin and IV ertapenem, as well as oral diflucan (there was yeast in the cultures from the mastoid). We had a great infectious disease consult from Mass General Hospital for Children. He came by everyday of the two weeks we ended up apending at Mass Eye and Ear.I know that the surgeon did not see cholesteatoma 8 weeks ago because I had previously read his op notes. Additionally, I had seen the CT scan in February, and it is very different from the one in May! He said he has never seen anything like this where the cholesteatoma regrows so quickly. The new drugs or maybe the mastoidectomy seem to be working. There is no new swelling one week post op. Has anyone had any of these experiences!!!?

[Guest guest]

Hi ,

Our daughter is eight years old and has had some similiar experiences.

Her cholesteatoma was dx when she was four. She had a tympanoplasty with

post auricular incision and had the same erosoin of her bones as your

daughter with the partial stapes left for revision, done canal wall up.

Six months later she had the prosthetic placed and her hearing was

greatly improved. We were thrilled. She was 5 at this time.

She also developed an abcess behind her ear, never complained , I just

noticed it when she turned to the side. This happened when she was 7 .

We had recently moved from Florida to Michigan when this happened. She

took oral antibiotics for three weeks and had another surgery and in the

DR.s words a huge c-toma had returned and eroded the prosthesis and her

mastiod was full of c-toma. He removed the prosthesis and the c-toma

from the mastoid. He had the intention of trying to insert a new

prosthsis in 6 mos.

I didn't have confidence in his abilities and we switched insurance so

we could go to University of Michigan Medical Center.

This past January she was to have a possible prosthesis placed by a

neurotologist/ent at UofM. The c-toma had returned and again filled her

mastoid . And our daughter had a radical mastoidectomy. I can't begin

to tell you what a relief this has been to us..to hopefully be off this

c-toma rollercoaster. It breaks your heart to have your children keep

going through these surgeries.

I wish you and your daughter the best and my heart goes out to you both.

Cheryl

>

> First, let me apologize for the length of this email. We are new to

> this group, and I want to acquaint anyone willing to read this with

> our unbelievable situation before I ask for advice. I pormise to be

> brief in the future.

>

> I can't believe I am just finding this group after two and a half

> years of going it alone!

>

> In December of 2005, I noticed some infected drainage coming from my

> two year old's left ear canal./ To my knowledge, she never even had

> one ear infection. The pediatrician said it was not too uncommon to

> rupture the tympanic membrane with a bad infection, which is what he

> thought she had. Three days later, there was granuloma growing down

> her ear canl, so we were referred to a specialist. He tried numerous

> drops, cultures, even a set of ear tubes before finally referring us

> in March 2006 to Dr. Keamy at the Massachusetts Eye and Ear

> Infirmary.

>

> A CT scan showed a large cholesteatoma which he removed by

> tympanoplasty with a postauricular incision. It had completely eroded

> the malleus and incus, and partially eroded the stapes. He removed

> these, leaving the stapes footplate for possible prosthesis. There

> was no evidence at that time of mastoid disease. This was done canal

> wall up.

>

> In December 2006, she went in for the second look. The majority of

> the mastoid was full of cholesteatoma, and he spent hours drilling it

> out, so there are almost no air cells remaining.

>

> In June 2007, she went back in. No cholesteatoma, so she got the

> prosthesis. After six weeks, her hearing was near normal, so we were

> thrilled.

>

> In February 2008, we did a CT scan, just to make sure all was well.

> It looked good, except that the prosthesis had slipped (the audiogram

> backed up that her conductive hearing loss was significant). Also,

> she had had a persistant hole in the tympanic membrane, despite

> numerous grafts.

>

> She went for surgery on April 9. The plan was to reposition the

> prosthesis and repair the membrane with fascia from the right

> temporalis muscle. When he went in, however, there was a small amount

> of cholesteatoma on the backside of the eardrum involving the

> prosthesis. He decided to remove the tympanic membrane completely and

> do a total graft. He also replaced the prosthesis with a new one,

> slightly longer.

>

> She was healing great. No redness, flat stitch line, no fever...

> Six weeks post op, we drove 100mi to my inlaws. We had just walked in

> the door when I kissed her and felt a huge lump behind her ear. I had

> never seen anything like that in the previous 7 surgeries, so I

> called MEEI and the resident told me to bring her in, so 100mi back

> to Boston. She had a postauricular abscess, which he thought could be

> a wound infection. He drained it with needle aspiration, applied a

> glasscock dressing, which I am sure you are all familiar with, and

> admitted her for IV antibiotics. In the morning, the swelling had not

> returned, so the on call surgeon sent us home with amoxycillin and

> the glasscock and directions to follow up on Tuesday--it was Memorial

> Day weekend.

>

> So, 100mi back to the inlaws for a picnic--Chloe was feeling fine.

> She didn't even mind the dressing. I felt a little funny, though,

> about a wound that looked perfect for 6 weeks suddenly swelling like

> that, so after the picnic, I took a peek under the dressing. The

> swelling had returned, so 100mi back to Boston.

>

> This time she received an incision and drain. She was admitted again

> and the new oncall doctor concurred that it was not likely a wound

> infection. He was so bothered by it that he emailed her surgeon who

> called the floor to ask me what was going on. It was a huge relief to

> know that her doctor was now involved.

>

> The diagnosis was mastoiditis. He scheduled her for surgery, but said

> he would probably not do a mastoidectomy just then. He was able to

> put a tube into the new graft and thoroughly irrigate the middle ear.

> He told me he suspected there was a small amount of cholesteatoma

> regrowth in the mastoid, but the landmarks were so obscurred that he

> wanted to wait a few weeks before attempting further surgery. He kept

> her on IV unisyn for two more days--so a total of a week in the

> hospital. She was discharged Friday, and by Sunday, the swelling had

> returned.

>

> She was readmitted, and he scheduled her for the mastoidectomy on

> Wednesday. He called up after about four hours to say that her entire

> mastoid was full of cholesteatoma, and it was also involved with

> several structures of the middle ear. He removed it from the mastoid

> and took out the prosthesis, as well. The ear was still too infected

> to safely complete the removal, so she is scheduled for another

> mastoidectomy on July 2.

>

> In the meantime, we went home Friday night. I am giving her IV

> Vancomycin and IV ertapenem, as well as oral diflucan (there was

> yeast in the cultures from the mastoid). We had a great infectious

> disease consult from Mass General Hospital for Children. He came by

> everyday of the two weeks we ended up apending at Mass Eye and Ear.

>

> I know that the surgeon did not see cholesteatoma 8 weeks ago because

> I had previously read his op notes. Additionally, I had seen the CT

> scan in February, and it is very different from the one in May! He

> said he has never seen anything like this where the cholesteatoma

> regrows so quickly.

>

> The new drugs or maybe the mastoidectomy seem to be working. There is

> no new swelling one week post op.

>

> Has anyone had any of these experiences!!!?

>

>

>