Re: Second surgery in 10 days

[Guest guest]

Ick! I remember taking Chloe in to continually have her suctioned until surgery. She was two at the time, was braver than I would be!

 

We are so lucky in Boston to have Mass Eye and Ear which has an otological ER dept. I can't imagine trying to deal with the regular ER. Her regular pedi was very rude to me once, and said she just had an ear infection (five weeks Post op). He got angry when I asked if I should give her surgeon a call and said he knew what an ear infection looked like. That was Friday of a holiday weekend. Around suppertime, I noticed a huge swollen lump behind her ear--it looked like an egg. I called MEEI, and they said to bring her in. She had mastoiditis osteomyelitis (infection of the bone) which had caused her middle ear and mastoid to fill with cholesteatoma debris when she had none five weeks earlier. She stayed two weeks in Boston, had two emergency surgeries followed by another four weeks later, and had IV antibiotics through a PICC line for a few months---I hope I never get " just an ear  infection " like that!

On Sat, Sep 4, 2010 at 2:34 PM, joanne peterson <jtpeterson@...> wrote:

Hi everyone, I've been away on holidays trying to keep my mind off the upcomming surgery. Had a complication a few weeks ago. Clear drainage started out of my cj-toma ear. Shortly after sever pain began in my head that was very different than the pain I always felt in my ear. The pain started moving down the side of my head and behind the ear in the surgery spot from my last tympanomastoidectomy. It felt like a vice grip on my head. I didnt fool around and went straight to ER. Unfortunately none of the ER Dr's are equipted here to understand anything about c-toma's. Both ENT's were away on holidays at the same time, as well as my Neurosurgeon and family Dr were all away. I kind of got lost between the cracks and had to give them all a synopsis of my disease and what I was afraid of. They did a cat scan which we all know does not show signs of brain tissue swelling...so that was kind of useless...they put me on strong antibiotics and sent me home. It got worse 2 days later and I was back in ER...again they sent me home. The local ENT came back from holidays the next day and got me in immediately, we switched antibiotics and they made a difference in one day! She said I definately had edema of the lining, but I was very fortunate that It did not get infected. She sucked out a pile of infection and I had to go see her every two days to have that difficult proceedure done to keep the infection under control. Its doing well right now, just trying to keep things infection free so they can do the surgery on the 14th. It was the first time that I felt really scared with this c-toma. I cant wait to get it out! Although, I am trying to remember the recovery and what I need to bring with me as I will be in another city and staying at a hotel for a few days afterwards. I remember I had a lot of packing, but I cant remember for how long...can any of you remember? Also, I know I used guaze and tape around my ear for the first long while when I would shower...anyone have any other idea's for what I may need in the first week poost-op? This will be another surgery where they go in through the skull and temporal bone. I would appreciate any reminders..

All the best,Joanne------------------------------------

[Guest guest]

Hi , I honestly could not imagine having my son, who is now six, go

through this...it must have been so hard for you! That helps me realize it could

be worse. I would rather have this myself than have Aidan go through this ANY

day!

All the best

>

> > Hi everyone, I've been away on holidays trying to keep my mind off the

> > upcomming surgery. Had a complication a few weeks ago. Clear drainage

> > started out of my cj-toma ear. Shortly after sever pain began in my head

> > that was very different than the pain I always felt in my ear. The pain

> > started moving down the side of my head and behind the ear in the surgery

> > spot from my last tympanomastoidectomy. It felt like a vice grip on my head.

> > I didnt fool around and went straight to ER. Unfortunately none of the ER

> > Dr's are equipted here to understand anything about c-toma's. Both ENT's

> > were away on holidays at the same time, as well as my Neurosurgeon and

> > family Dr were all away. I kind of got lost between the cracks and had to

> > give them all a synopsis of my disease and what I was afraid of. They did a

> > cat scan which we all know does not show signs of brain tissue swelling...so

> > that was kind of useless...they put me on strong antibiotics and sent me

> > home. It got worse 2 days later and I was back in ER...again they sent me

> > home. The local ENT came back from holidays the next day and got me in

> > immediately, we switched antibiotics and they made a difference in one day!

> > She said I definately had edema of the lining, but I was very fortunate that

> > It did not get infected. She sucked out a pile of infection and I had to go

> > see her every two days to have that difficult proceedure done to keep the

> > infection under control. Its doing well right now, just trying to keep

> > things infection free so they can do the surgery on the 14th. It was the

> > first time that I felt really scared with this c-toma. I cant wait to get it

> > out! Although, I am trying to remember the recovery and what I need to bring

> > with me as I will be in another city and staying at a hotel for a few days

> > afterwards. I remember I had a lot of packing, but I cant remember for how

> > long...can any of you remember? Also, I know I used guaze and tape around my

> > ear for the first long while when I would shower...anyone have any other

> > idea's for what I may need in the first week poost-op? This will be another

> > surgery where they go in through the skull and temporal bone. I would

> > appreciate any reminders..

> > All the best,

> > Joanne

> >

> >

> >

> > ------------------------------------

> >

> >

[Guest guest]

It is true that it all sounds really awful. But we only lived it one day at a time. She has been having surgery since she was two and she is now seven and a half (the half is very important). She has had thirteen surgeries and some of the yucky stuff, but certainly not the worst things. Hers was tricky because it did not behave normally and grew very fast. It also seemed to be everywhere. Anyway, it's all so normal to her now that she actually has a harder time imaging what it will be like NOT to have surgery. I hope your surgery goes well. You will feel so much better when all the infection that comes with this is gone! (Don't forget to have some yogurt or probiotics with all those antbiotics. It helps keep away yeast infections, especially in the intestinal track, nothing worse than being post op AND having diarrhea!)

On Sat, Sep 4, 2010 at 6:27 PM, joanne peterson <jtpeterson@...> wrote:

Hi , I honestly could not imagine having my son, who is now six, go through this...it must have been so hard for you! That helps me realize it could be worse. I would rather have this myself than have Aidan go through this ANY day!  

All the best

>> > Hi everyone, I've been away on holidays trying to keep my mind off the> > upcomming surgery. Had a complication a few weeks ago. Clear drainage

> > started out of my cj-toma ear. Shortly after sever pain began in my head> > that was very different than the pain I always felt in my ear. The pain> > started moving down the side of my head and behind the ear in the surgery

> > spot from my last tympanomastoidectomy. It felt like a vice grip on my head.> > I didnt fool around and went straight to ER. Unfortunately none of the ER> > Dr's are equipted here to understand anything about c-toma's. Both ENT's

> > were away on holidays at the same time, as well as my Neurosurgeon and> > family Dr were all away. I kind of got lost between the cracks and had to> > give them all a synopsis of my disease and what I was afraid of. They did a

> > cat scan which we all know does not show signs of brain tissue swelling...so> > that was kind of useless...they put me on strong antibiotics and sent me> > home. It got worse 2 days later and I was back in ER...again they sent me

> > home. The local ENT came back from holidays the next day and got me in> > immediately, we switched antibiotics and they made a difference in one day!> > She said I definately had edema of the lining, but I was very fortunate that

> > It did not get infected. She sucked out a pile of infection and I had to go> > see her every two days to have that difficult proceedure done to keep the> > infection under control. Its doing well right now, just trying to keep

> > things infection free so they can do the surgery on the 14th. It was the> > first time that I felt really scared with this c-toma. I cant wait to get it> > out! Although, I am trying to remember the recovery and what I need to bring

> > with me as I will be in another city and staying at a hotel for a few days> > afterwards. I remember I had a lot of packing, but I cant remember for how> > long...can any of you remember? Also, I know I used guaze and tape around my

> > ear for the first long while when I would shower...anyone have any other> > idea's for what I may need in the first week poost-op? This will be another> > surgery where they go in through the skull and temporal bone. I would

> > appreciate any reminders..> > All the best,> > Joanne> >> >> >> > ------------------------------------> >> >

[Guest guest]

Thanks , yes I have been on jprobiotics for the past week..trying to

build up the immune system with a few things before surgery, especially since I

just finished a couple weeks of heavy duty antibiotics. Best wishes for your

daughter..she sounds like quite a trooper!

> > >

> > > > Hi everyone, I've been away on holidays trying to keep my mind off the

> > > > upcomming surgery. Had a complication a few weeks ago. Clear drainage

> > > > started out of my cj-toma ear. Shortly after sever pain began in my

> > head

> > > > that was very different than the pain I always felt in my ear. The pain

> > > > started moving down the side of my head and behind the ear in the

> > surgery

> > > > spot from my last tympanomastoidectomy. It felt like a vice grip on my

> > head.

> > > > I didnt fool around and went straight to ER. Unfortunately none of the

> > ER

> > > > Dr's are equipted here to understand anything about c-toma's. Both

> > ENT's

> > > > were away on holidays at the same time, as well as my Neurosurgeon and

> > > > family Dr were all away. I kind of got lost between the cracks and had

> > to

> > > > give them all a synopsis of my disease and what I was afraid of. They

> > did a

> > > > cat scan which we all know does not show signs of brain tissue

> > swelling...so

> > > > that was kind of useless...they put me on strong antibiotics and sent

> > me

> > > > home. It got worse 2 days later and I was back in ER...again they sent

> > me

> > > > home. The local ENT came back from holidays the next day and got me in

> > > > immediately, we switched antibiotics and they made a difference in one

> > day!

> > > > She said I definately had edema of the lining, but I was very fortunate

> > that

> > > > It did not get infected. She sucked out a pile of infection and I had

> > to go

> > > > see her every two days to have that difficult proceedure done to keep

> > the

> > > > infection under control. Its doing well right now, just trying to keep

> > > > things infection free so they can do the surgery on the 14th. It was

> > the

> > > > first time that I felt really scared with this c-toma. I cant wait to

> > get it

> > > > out! Although, I am trying to remember the recovery and what I need to

> > bring

> > > > with me as I will be in another city and staying at a hotel for a few

> > days

> > > > afterwards. I remember I had a lot of packing, but I cant remember for

> > how

> > > > long...can any of you remember? Also, I know I used guaze and tape

> > around my

> > > > ear for the first long while when I would shower...anyone have any

> > other

> > > > idea's for what I may need in the first week poost-op? This will be

> > another

> > > > surgery where they go in through the skull and temporal bone. I would

> > > > appreciate any reminders..

> > > > All the best,

> > > > Joanne

> > > >

> > > >

> > > >

> > > > ------------------------------------

> > > >

> > > >