Hearing

[Guest guest]

TSH is a factor for thyroid cancer patients. You must keep the level

to .1 or below to supress any possible remaining cancer cells post TT

and RAI.

I do not recommend self treating when dealing with thyca. You really

need to know what you are doing and it isn't as easy as just adding

Armour. I consider this to be very bad advice - this is speaking as

someone who has walked in these shoes.

> > >

> > > Hi. I am new to this group and have been lurking for months. I

also

> > > have tinnitus. I have noticed that it is much worse lately. I

am a

> > 30

> > > year Thyca survivor and also have low BP. My tinnitus seems to

get

> > > worse when my thyroid meds are reduced and notice that it also

makes

> > my

> > > BP go lower. My endo also told me that I would not need to worry

> > about

> > > iodine as I did not have a thyroid. I kept complaining of my

hypo

> > > symptoms and he told me that because at the time that my TSH was

> > around

> > > .2 that he could not ethically treat me. I fired him and am now

> > going

> > > to another, but I am not hopeful that it will be any different.

Just

> > > the come back in three months stuff. I go to her at the end of

> > March.

> > > If it is no different I will have to go to someone else. I felt

> > great

> > at

> > > 200 mg of synthroid medication, no problems, but currently have

been

> > cut

> > > back to 125 mg for months and feel bad. I have developed bags

under

> > my

> > > eyes and swelling under my eyebrows and look horrible. BP on

2/6/08

> > was

> > > 94/58. I have fibrocystic breast disease and a number of other

> > issues

> > > as well. Need to get on iodine I know...

> > >

>

[Guest guest]

i have 4years daugter.she is wearing a analoge hearing aids because of her

1.5hearing loss.i am not affod to go speech tharipest so i want some ideas of

speech tharipy for her in home please tell me what can i do about her speech

tharipy she speak same words but i want she speak with us as a nomal child can u

help me hows its possible i am very gratefull to u to help me in home arrange

speech tharipy.zainab mother

[Guest guest]

Hi - You mention that your hearing has turned out very well considering what your ear has been through. Can I ask what procedure your doctor did to improve your hearing? About a month ago I had a titanium 'ear bone' (not BAHA) put in and my doctor told me it could take 2 or 3 months to know the full extent of my hearing improvement. Since my cholesteatoma in my childhood (23 years ago) I have had almost no hearing in that ear so I am VERY excited (Beatles in STEREO anyone?!!!!!) for even slight improvement. I should mention- my hearing is definately improved and it still feels plugged up and full. Can't wait for another 4 weeks to pass as the gel pack slowly dissolves!JimmyFrom: Graves <graves7@...>Subject: Re: pregnant and just diagnosedcholesteatoma Date: Saturday, January 29, 2011, 4:22 PM

Hi there - Let me 1st apologize for the extensive email. The condition is as extensive as the stories

I have been following and reading these post for quite sometime and this is the first time I feel I should respond and tell my story. It is so similiar to yours!! I had complained of earaches, fullness, dizziness for most of my teenage years - Multiple docs throughout the years diagnosing me with everything from MVP, hypoglecemia, stress ( you name it )... I started working as an office manager for an ENT in 2000 that I had known for some time and at the time I was 5 months preg. with my 2nd child ( and celebrating my oldest daughters 1st bday ) I had always knew something was wrong but I could just not figure out what it was... After the birth of my 2nd daughter ( while on maternity leave ) I as walking through the mall ( with both babies in a stroller ) and almost passed out. It felt like my vision went black.. It scared me so bad I called the ENT I worked for on his cellphone crying and told him "something is wrong"... He told me to

come in right away and as soon as he looked in my ear he could not believe - He said " you have a huge cholesteatoma and we need to do immediate surgery ".. 2 days later I was in preop with the same fears you are currently having, will I be ok? Can I take care of the babies? How bad will the pain be? etc etc.. Rest assured ~ You will be FINE!! This tumor had wrapped around my facial nerve, destroyed all of the bones in my ear - My ENT was my angel - He went in behind my ear- removed the tumor and stapled me up. The surgery took approx 4 hours and I was in recovery for an hour or two then sent home. It is important to rest and take good care of the packing - within 3-5 days you should be able to return to semi normal... I know with a baby nothing is normal.. I kept the baby in a high pack n play so I did not have to lean over and thankfully my oldest was mastering climbing on the couch to sit with me my while I fed the

baby.. I know it seems ovewhelming right now but please know- It will all work out )

In 2002 I was back in for my 2nd surgery because my eardrum collapsed - I had moved and let a different ENT do this surgery ( big mistake ) he placed a TE tube and removed some residue of a tumor..

2004 - I knew something was going on ( it was so strange, my body just knew ) I thought I better go back to the 1st ENT - No matter how far I need to drive! He was not happy with me because after your 1st surgery you SHOULD go back within the next year for an explotitory to see how things look ( which I neglected to do ).. I will not lie, I dreaded doing that surgery again and hoped the problem would just go away!!

It didn't and I sincerely regret not following his instrustions ~ The tumor was back for a 3rd time and just as bad as the 1st. This time was another 4 hour surgery - however this time I had to stay in the hospital one night. Mind you - I did not know the extend so when I went under the ENT was just doing a simple exploritory surgery and I woke up in a room with a head full of terrible pain.... This time canal wall down, removal of the tumor ( facial nerve again ) and he opened the canal just a little for easier access to the mastoid for cleaning.The recover was not to bad, I had the kids ( 4 & 3 ) and my husband had to go back to work after 2 days so I was left alone. He made up lunches and drinks and put them on the bottom shelf of the frig and the girls grabbed them while I layed on the couch and watched over things..Within a week I was again, functioning as normal. I did not take pain meds for either surgery they made me feel to loppy

and with the kids I did not want to be out of it.. So I just took motrin / tylenol. I can honestly say, I do not remember the pain being to much to handle. The doc did give me dipositories for nausea and I only used them the DAY of my surgery, he also gave volium for the dizziness - I am a whimp so 2 mg was all I could handle and I only took one at bedtime - They do help and to this day if I get a dizzy spell he recommends taking until it subsides.

If I had to give you advice - Find a GREAT doc ( not a good one!! ) Do your research - My ENT was an Otolartngologist/neurologist and my hearing is perfectly fine ( there are a few tones that I have a hard time hearing ) overall my hearing is great. When I have hearing tests now they can hardly believe I have had all of these surgeries! This is a condition that you will always contend with so educate yourself because the docs do not know how YOU will heal or respond. I have spoke with many ENT's on the subject - I do not let water in this ear at all, I use a plug to shower and swim. That is a small price to pay - Also, you have to stay active to maintain your balance - My ENT gave me some vestibular exercises to do - I do recommend them as they do help OR I use the balance board for the WII.

In 2009 I finally had my sinus surgery ( that was always on the list ) to help with the ear as well - Last month I insisted on a CT scan to see how things were going and all is clear ;O) My ENT officially told me -YOU ARE DONE, Stop worrying ( but I still do, and always will )

Keep your head up and stay strong ;o)!!! All will work out and this site is fantastic to listen to the stories and know that you are not alone ! To my fellow cholesteaoma friends - God bless!!

Email me if you need additional support - graves7@...

From: janelleschnulle <janelleschnulle@...>cholesteatoma Sent: Fri, January 28, 2011 8:41:17 PMSubject: pregnant and just diagnosed

hi everyone, I was just diagnosed this past tuesday after problems with hearing loss/ fullness, and recently very bad earache. The dr pulled what looked like a jagged tooth out of my eardrum in his office, and told me I needed a CT and surgery after delivery of my baby. (I am 35 weeks pregnant). Two days later he inserted a tube for (hopefully) temporary relief of pain and fluid. I had a severe perforation of eardrum 10 yrs ago so I'm guessing its been growing since then. I am having the CT day after I deliver baby. He said I could wait a few months after baby is born unless I still continue to have pain- then I need it asap after baby. My husband and family think I should go ahead and get the surgery over with asap after baby born either way. Any advice? My concern is being able to breastfeed and care for a newborn, wake up every few hours, etc... AND deal with the pain and other issues from surgery. (although I will have family help at home.) If I

wait until baby is 3 months old, it'll then be almost summer, and the two children I have in school part time will also be at home full time. I have 4 YOUNG children and another that'll be here in a few weeks. This really sucks. I'm trying not to be depressed, but feel like this is just gonna ruin my life, and my poor kids' lives. My OB wants to do an amnio at 37 weeks to see if baby's lungs are mature enough for me to be induced then. (since I'm not sleeping much due to the pain, etc..) Does anyone know if I can even push during labor? sigh......... thanks in advance, glad there is a group like this.