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

[Guest guest]

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!!!?