Annie

October 9, 2004

****Thank you,Annie!

****Your words are so encouraging!

****

****Maralee

****

************It's amazing how much our kids change over the years. When

************Louie was

************first diagnosed at 2.5, we were told the best thing we

************could do was to

************institutionalize him, visit him once a month, and try and

************get on with

************our lives. We were told that he would likely never talk or

************be able to

************be with anyone other than family, that he would likely

************never hold a job.

************So now here's Louie at 24: he's been in assisted living

************for 3 years and

************just moved to a less-restrictive house, he is his own

************guardian and makes

************his own decisions, he talks to anyone willing to listen

************(unless he's

************concentrating on something else), he has a paying job

********as Assistant

************Sexton at our church and they're thinking of adding another

************day for him

************next year because they're so impressed with his work (he

************works 2 days a

************week now), he has 2 volunteer jobs...one filling the wild

************bird feeders

************at a local wildlife/nature center (he's had this one 2.5

************years), another

************visiting an elderly lady at a local nursing home, he joined

************the church

************by his own decision (didn't ask us our opinion), he tithes

************from his own

************money which he also manages, he has a savings account

********as well as a

************checking account, and he's working toward having his own

************apartment with

************only part-time aides to come in daily to make sure he

************bathes and takes

************his meds and to cook for him. As you can see, he's

********turned out much

************differently than the drs. told us he would. And that's the

************thing. We

************can no more tell what our auties are gonna do than we can

************tell what our

************NT kids are gonna do. In either case, it's all in how you

************raise 'em and

************in the opinion of themselves you help to instill. Any kid,

************told daily

************that they can do anything they apply themselves to, will

************succeed...IMHO.

************

************We despaired that Louie would ever moved out too, because

************of how he was

************when he was younger and what we'd been told to expect as he

************matured.

************But move out he did, and he's happy as a clam about it.

************He visits us

************for Sunday dinner, and comes to church with us most

************Saturdays, but we

************just don't see him the rest of the week....his choice. :0

************

************Don't give up. He'll do well, just watch.

************

************Annie, who loves ya

********annie@...

************--

*****

****

October 9, 2004

Annie,

I always LOVE hearing about how Louie is doing! He is a real inspiration!!!

~hugs~

Rabecca

April 14, 2005

Hi Annie,

Hope everything goes fine with Zack. It is amazin that the ctoma became so large in just three years. My son's Nick's medium sized ctoma was detected by his Ped. when he was a little less than 3 yrs. All the ENTs that we went to gave a lot of credit to the Ped. I was told that many times it goes undetected because the Ped. is generally not looking for something like this. My Ped said that in his 30yr, average 3000 patient practice he had just 2 instances of Ctoma.

Did you say that it's going to be an inpatient procedure, I suggest, try to have Zack stay overnight. My son's surgeon had him stay overnight and because he threw up twice, he actually kept him a second night. I was happy to have him stay both nights because I was so scared to take him home with the bandage and cup. Nick will be going in for his second tympanoplasty next month.

good luck

Jaya

Annie Brickner <annbrickner@...> wrote:

Hi Shelli,

I took my little guy to see two otologist/neurotologist’s in Manhattan by the names of Dr’s Kohan and Selesnick. Both docs agree that Zack’s cholesteatoma is large, aggressive and has already most likely damaged all three hearing bones also exposing the facial nerve. They believe that it is congenital due to the size of it. It is extensive and is just everywhere including the mastoid area but did not travel any further than the there. Both docs agree

that a CWD procedure may be best due to the size and location but would make the final assessment once they go in. Neither doc holds much hope in retaining any of the hearing bones but hold out hope for reconstruction. Zack is only three so all of his hearing tests are questionable. The two docs differ in there procedure, however. Kohan wants another Ped ENT to remove Zacks adenoids and place a tube in the good ear because of the fluid retention. Upon healing for 3 to 4 weeks Dr. Kohan would then go in and remove the cholesteatoma. Selesnick believes in tackling the cholosteatoma first then in a subsequent procedure, perhaps 6 months later remove the adnoids while taking a look to check for more growth.

Both docs seemed very knowledgeable so it was a very hard decision but we decided to go with Dr. Selesnick. Zack is now scheduled for surgery on May 12th. I still wonder how the pediatricians could have missed this because it was sooooooo evident by looking in his hear to the first ENT I took Zack to. I hear that the surgery takes about 3 to 4 hours and is done on an out patient basis. Recovery they say is not so bad but I’d like to hear what others have to say about that.

How is Mikaela doing? Have you had a ct scan yet? Hope that all is going well.

Annie

-----Original Message-----From: ROBERT SHELLI PETERS [mailto:scott_sh] Sent: Monday, April 11, 2005 12:18 PMcholesteatoma Subject: Re: Dr. in Oregon for 6 yr old with Cholesteatoma

Annie:

I am anxious to hear what the surgeon in Manhattan said. I pray some of your questions were answered and you now have a better grasp on where to go from here.

The Dr.'s suspect her condition may be congenital but are not sure. The Dr. told us she may have been born or acquired this when she could not communicate so her body adapted to the pressure and pain making it normal for her. She only has the cholesteatoma in the left ear. She did not have ear infections as an infant and only was sick a few times with cold type symptoms. Her first "swimmer's ear infection" was diagnosed and treated with antibiotics in 2003. At that time she did not complain of pain, only an odor-no drainage. However, it did take several months and two different types of antibiotics to clear up the infection. The Pediatrician tried to irrigate her ear at that time because she had low visibility of the ear drum. I was told my daughter produced an excess amount of ear wax and

that blocked water in her ear causing bacteria to grow and infection. A hearing test was performed after the infection was cleared with antibiotics. She had no hearing problems at all. Mikaela is in kindergarten and her teachers have not noticed any type of hearing impairment. I have not noticed anything either. My husband and I joke it is because we already have an 11 year old that suffers from "selective hearing" that we do not notice a problem with Mikaela. The only other ear incident was the end of March 2005. Mikaela had a cold and complained of pain in her right ear and had an odor coming out of her left ear again. I took her to a Pediatrician who could not see the ear drum and irrigation did not help. She referred me on to an ENT to have her ear vacuumed. The ENT vacuumed out both ears. The left took quite some time and he still could not remove all of the debris. He prescribed antibiotics

and ear drops and told me to come back in two weeks. When we returned in two weeks he again had to vacuum out her left ear. He could see her ear drum had recessed and could see the cholesteatoma. He sent us to have a CT scan and scheduled an audiogram. I was told to flush Mikaela's left ear twice a day with vinegar until the appt on the 19th. We do not know the extent of the damage at this juncture. The ENT has not mentioned anything about adenoids, tonsils, or tubes in her ears.

I am encouraged that our little ones are not feeling pain. I hope your appt with the surgeon went well. Have a nice evening!

Shelli

RE: Dr. in Oregon for 6 yr old with Cholesteatoma

Hi Shelli,

I can’t help since my son was just diagnosed too. He also didn’t have ear infections until last summer which was also first diagnosed as swimmers ear. I did hear, however, that what you are looking for is a ototologist/neurotologist (please forgive the spelling) not just a ped ENT.

Good luck, Annie

-----Original Message-----From: Shelli [mailto:scott_sh] Sent: Saturday, April 09, 2005 12:31 AMcholesteatoma Subject: Dr. in Oregon for 6 yr old with Cholesteatoma

Hello! I am really impressed with all of the information posted for this group regarding Cholesteatoma. My 6 yr old daughter was recently diagnosed with Cholesteatoma. We are waiting for the results of the CT scan and audiogram. She did not have her first ear infection until the age of three. She does not experience any pain or pressure, just an odor from her ear. It was first diagnosed as "swimmer's ear" by a Pediatrician and was treated with Antibiotics and ear drops. Just this

month we were finally referred to an ENT. We are now looking for a surgeon in Oregon to perform the removal of the Cholesteatoma. Can anyone give us any advice on finding a surgeon? Advice on what to expect from surgery? I am new to this and am trying to find all the information I can. Thank you!

December 8, 2008

Ann,

I have a question..your doctor said that the epidurals are addicting,

certainly he didn't mean that the medication, methyl pred is addicting. I

am going to assume that he meant being pain free is addicting. I have never

seen in print any mention of prednisone being addicting. The words you used

" warm and glowy " would equate with the euphoria that oral or IV steroids can

cause...I am completely unaware of this side effect from a epidural

injection. Unless your doc is giving you a very large dose. Some docs do a

series of three injections 1-2 weeks apart, how long ago was your last

injection? Some docs wont let you do more then 3 in a year, others will let

you do 6 or 9 in a year. I have had 50 plus injections over the last 10

years. They have always relieved some of the pain.

Deb RN

From: neck pain

[mailto:neck pain ] On Behalf Of grasshopperx_10

Sent: Monday, December 08, 2008 12:18 PM

neck pain

Subject: Re: Annie

GREAT!!! thats so good to hear. i'm glad. sometimes i'm not getting

my emails thru. So in case you email and i dont answer, thats my new

email not working right. got to figure it out and get it fixed. cindy-

-- In neck pain

<mailto:neck pain%40> , Ann Wood Fuller

<gatorma1@...> wrote:

>

> Hi Cindi,

> I am BACK home and doing great!!!!!!!! at least in my mental status.

> I am back to church singing and also practicing Bach chorals for

Xmas and Handel's Messiah for A City production--- I sing opera-- if

I forgot to tell you. Google Gainesvile Civic Chours if youy wqant to

read about the huge choir I am in.

>

> BUT my neck's epidural is wearing off and I am getting crippled and

saw the ortho spine Dr and asked him about those steroids and YES

they are addicting and i can have another one in January but not

before Xmas. Boo

> Has anyone else had this reaction to these epidurals??they make you

feel all warm and glowy and too take away the pain in the neck.

> He said I can have the surgery but that I have opted not to right

now- there is a 4 %chancece of it affecting my vocal chords and I

cant have that.

> I am still using the Lorcette-- too.

> email me soon, and thank you for asking how I am.

> Love Annie

>

> A poet is, after all, to see

>

> From: grasshopperx_10 <woody1014@...>

> Subject: Annie

> neck pain

<mailto:neck pain%40>

> Date: Saturday, December 6, 2008, 1:02 PM

>

> Annie how are you doing? and how did you do the other night? we are

> having trouble with our emails coming in. sometimes we arent

getting

> them cindy

>

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

>

December 8, 2008