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 on: June 09, 2013, 08:01:53 PM 
Started by westy674 - Last post by Mike in VT
Hello from VT. USA.
exactly two months ago i had the canal wall up procedure. the malleus and incus (hammer and anvil) bones
were removed. the tip of the hammer was salvaged and placed on the new ear drum in combination with
a micron II titanium prosthesis. in English this means the surgeon linked my inner ear from the stirrup to my ear drum again.
the highest frequencies for me are harder to hear. if i plug my good ear and listen to a fan across the room i'll hear the motor or some fan sound but not the air swishing. the 'top' of the S's are harder to hear.
one thing i can tell you is for two weeks following the surgery i was stone deaf in that ear due to the ear canal being stuffed like a sausage with antibiotic paste and Gauze. they do that so the ear canal retains it's shape and doesn't heal itself shut. having one ear only is different because EVERY sound is seemingly coming from one side. you have no directional capability. that is frustrating. you'll find yourself doing the Stevie Wonder moving your head back and forth to locate sounds.
If you can hear well enough now to get back in the military then get back in first.
cholesteatoma's must be dealt with through surgery but it won't engulf your facial nerve in a couple of months so you have some time on your side.
everyone is different. my surgeon., Dr. Mark Levenson, Saratoga Springs NY, has been in  this business for over 30 years. Also I'd find a way to determine what hearing levels are acceptable or waiverable in the military as there are a LOT of ear injured soldiers these days and many are still in.
Good luck. if you want to write, and I'll be happy to answer anything else if
I can. so far so good. my ear is very much still healing inside. the outer incision is barely noticeable as it was done on the crease of where my ear meets my head.
can't look back but hoping for a bit more of the high end stuff to come back alittle more.
take care.

 on: June 06, 2013, 02:20:53 PM 
Started by earmommy - Last post by Christopher
Hang in there! I had three ear operations to remove my c-toma (left ear only), all before the age of 6, and I required regular cleanings to minimize infections and complications all the way into my teenage years, in addition to some speech therapy. I'm now in my late thirties and I can tell you it will get better. I'm sure my parents went through what you're going through now.

I suggest you help your son develop healthy strategies that he can grow used to and feel okay with. I'm not fully aware of his details, but I'm essentially deaf in my left ear (it has a large empty cavity inside after nearly everything was removed). My right ear is okay. Based on my info, here are some tips that helped me (apologies if some or most of these don't apply for you).

* Always have ear drops ready. I've always used a formula with this ratio: 2tbsp hydrogen peroxide solution, 1tsp vinegar, 1tsp rubbing alcohol. The trick is getting the right temperature. Too hot stings badly. Too cold and the whole world will be spinning with a massive head ache.
* Keep clean tissues with him that are accessible. That way if his ear starts draining (and it might smell), he can do his best to clean it some if he's at school or with friends or out of the house--- until he can use the ear drops.
* Be upfront about his situation with friends and other families. They don't need all of the details, but need to know there will be complications likely with motion sickness and keeping the ear dry. Car rides could be troubling (less so for me as I got older). Amusement park rides should be out of the question. Swimming is complicated. Showers shouldn't be a problem, although I mostly took baths until around age 13-14.
* When it comes to hearing, he should become more strategic. I sit or walk next to someone so my good ear is closest to them, even if I have to tell them it's easier for me. For me, I can't sense the direction a sound is coming from. Large crowded areas are tough for me to focus. Finding friends in a busy lunch room was always a challenge for me (I also didn't know my vision was 20/50 growing up). If you have multiple phones in the home then make sure each phone has a different ringer.
* Let him know that the human body and mind are great when it comes to adapting. If he keeps a good attitude and continues to search for successful solutions then he will find them.
* Remind him that there is no such thing as normal. People like him are redefining normal every single day.

Also--- my ear only drains about once every few months and I've pretty much been able to manage it myself for the last 20 years. During this period, I've only visited a specialist twice (to get my cavity cleaned out). Otherwise, I practice prevention and self-cleaning.

Best wishes to you, your son, and your family.

 on: June 06, 2013, 03:47:49 AM 
Started by meagan - Last post by steve
Hi Meagan,
I hope your dizziness has now gone and you're back to a normal life.  I'd like to tell you and anybody else about the diziness and vertigo I experienced in the hope it may help.

When I first developed cholesteatoma (before diagnosis) I began to feel more wobbly every day.  As time went on it got worse to the point I would fall over if I turned my head sideways.  Although I was on a waiting list to see a ENT doctor, at that point I decided to admit myself to a hospital with a ENT clinic.  I was in for 1 week until the infection (what they thought it was) had cleared and I was discharged.

The following night I awoke experiencing two spin attacks (like being on an out of control fairground ride) - the worst experience of my life - back to hosptial via ambulance.
Fortunately in hospital I had the luck of being seen by a doctor that sent me straight for a CT scan, and all was revealled.

After surgery I remember looking out the hospital window enying those that could walk around enjoying a normal life, I could hardly walk in a straight line without needing to hold on to something.
My specialist got me carrying out Cawthorne Cooksey exericeses which I carried out 3/4 times a day, more intensively as my balance got better.  I got my wife to throw a small rugby ball around the room for me to catch which helps tremendously.

After about 2 months I was able to drive again and today (7 years later) I don't notice my balance, only when i close my eyes when walking around.  One thing I remember that also helped is visiting old properties with uneven floors as you really notice it.  Uncomfortable but helps the brains adapt.

I hope this helps, Steve (UK).

 on: June 04, 2013, 08:17:21 PM 
Started by westy674 - Last post by earmommy
My son is at 40dbs and it is like missing half your hearing on that side.  He can still hear but it has to be loud.  In the States I believe that you would not pass the hearing test to join the military with this hearing loss.  Further, anyone here that has ever had a cholesteoma is not eligible for military service but if you are already in you can stay in it seems in most cases so I understand your line of thinking.

That said I think you have to be careful here.  If you let that thing grow too much prior to having surgery it could get into more places like your facial nerve so you should get it taken care of ASAP.  Unfortunately, once you have the surgery you will have a large scar behind your ear.  There is no way any decent medical officer is going to miss it.  Any ear surgery here is a disqualifier.  Sometimes you can petition for waiver but I don't know how often they grant them for this problem.  Because you know its not good to have an ear problem flare if you are in combat.

I know this sucks but please put your health first, always, no matter what.  Careers, pass times, hobbies, people you may want to impress, they all come and go and in the end you are left with you and you are the one that has to look out for and protect your precious self.  You have to stand strong for yourself and your health and put this first.

I know these things about the military because I used to work with a lot of soldiers in the US.  Also I have a 13 year old who is a scout, loves all the survival stuff and talks about how he would like to join the military and be a special forces guy one day.  I have had to gently remind him that it is just not in the cards for him but there are a thousand careers out there he would be great at.  He's a little badass too, just cant get that ear wet!

Take care

 on: June 04, 2013, 07:55:34 PM 
Started by saveme - Last post by earmommy
I see no one answered your question- I just joined her.  I will say a prayer for you right now to find the right help.  My son has had lots of problems and has an unusual case but I do know that most kids don't have much problem with the tumor coming back if they have the canal wall down procedure.  From what you wrote it sounds like your child has been having canal wall up procedures.  The canal wall down is more radical and there are some restrictions about getting water in the ear afterwards but it usually gets rid of all the cholesteoma.  My son had one at 6.  He has had to have more surgeries not because the c-toma came back but due to complications but he is unusual.

They even have a newere procedure where they can do the canal wall down then rebuld the ear to canal wall up all in the same surgeries.  If I was starting with this now I would as about this.

 on: June 04, 2013, 07:41:22 PM 
Started by earmommy - Last post by earmommy
My son had a canal wall down and and then had a revision two months ago.  He had a CWD at 6 and is 13 now so has always had to go in the pool with a plug and ear band as instructed by his surgeon.  Afterwards we put a vinegar alcohol solution in his ear.  He had a revision surgery about two months ago.  Tonight he jumped in the poo and went all the way under and said his ear got wet inside.  We used the vinegar alcohol solution that we always do after he goes swimming but I am scared to death.  His ear hurt after it happened and he had a headache but a half hour later said it was fine and he felt fine.

I am always torn between letting him do as much as he can and protecting him.  I would be happy if he never went in a pool or took a shower again but that is not realistic I know and his surgeon even reminded me of that.  I guess I am just venting I will be worried now for weeks waiting to see if everything is ok.

My son has had surgeries, complications, infections since he was 4 even though he had a CWD at 6.  We live several hours from John Hopklins so we are lucky that he has great care.  It is still hours away and I wish we could just move close to the hospital but it is not realistic as I am disabled myself and need help getting him back and forth to the doc sometimes and when he was younger needed family to help with him after his dad died.    I just love him so much and so much want a normal life for him.  He is such a nice guy and generally happy even with all he has been through.  Please say a prayer for us.  Nine years is a long time and I just want him and our family to have a little break where he is fine.  I pray at night for God to give us a few straight years of no infections and no scarey stuff just so we can get a little break from the stress. 

OK pity party over,  Anyone reading that's so much for being out there.  The stress is just overwhelming sometimes and my sons case has been so unusual there is no one to talk to

 on: June 04, 2013, 06:46:26 AM 
Started by steve - Last post by steve
Due to the severity of my cholesteatoma in my left ear I was left deaf in this ear and wobbly (vertigo).  Cawthorne cooksey excersises helped cure my balance and I got used to only having one good ear.

After 3 wall up procedures to clear me of the cholesteatoma and 5 peaceful years, my faulty euastachian tube has pulled another cholesteatoma into formation.

As I have no hearing in this ear my specialist has decided to take out the bones and ear drum and seal up the ear with fat tissue from my belly (all those beers paid off)!!

I was given the wall down option but he thought I might be blighted with constant infections.

Has anybody else had the remove everything op' and what was it succesful???

 on: May 26, 2013, 01:00:59 AM 
Started by westy674 - Last post by westy674

This is my very first post so forgive me if I've posted in the wrong thread etc.

I am 21 years old, living in Australia, and I suspect I've had cholesteatoma since I was about 17-18, when the first symptoms showed up. When I was 19 I joined the military and had the masterstroke idea of having them deal with it under private health, but I was injured overseas before they could plan a surgery. I have discharged since then and dare not say a word to Veterans Affairs because I hope to re-enlist in the future dependant on my recovery. I am now one week away from a canal wall up mastoidectomy and am positively horrified.

My doctor is Dr. Nigel Biggs who is a very caring and understanding man, as is his assistant who I met to discuss the surgery with just the other day. She suspects that they may have to remove the ossicular bones and I may suffer up to 50db hearing loss, though they won't be sure until they get in there. I have minimal bone erosion and they suspect there will be low to no risk of nerve damage.

My main questions are: has anyone had a similar procedure (Rhetorical question I guess!) under similar circumstances? Does anyone here suffer similar hearing loss? That is my main concern. I'm just not sure what to expect, what does a 50db hearing loss actually feel like? I hear it's classed as "moderate".

They didn't mention much about regrowth and only briefly skimmed over the topic of reconstructing my hearing so I guess they're not sure what to expect until they get in there.

Any personal experience would be greatly helpful.

 on: May 18, 2013, 11:22:31 AM 
Started by Happymom - Last post by saveme
Hello,Ethan's Mom,

Not sure if you will still come back to this board.Anyway,if you get chance see this post,I would like to ask some questions.

How about your son now? Is his hearing improved a lot? When you mentioned the doctor used the skin under his arm to reconstruct the ear bone,I felt a hope.As my son's ear bone was all gone and the doctor we saw said he was not sure if the ear bone can be rebuild or not.So I do want to try the doctor you mentioned,hopefully miracle will happen to my son!

Take care!

 on: May 14, 2013, 04:54:23 AM 
Started by lynntabor - Last post by Scottymate
So the left ear the eardrum is stuck to or fused with the middle ear. My left eardrum is fused to the bones. However my cholesteatoma was in my right ear. I had a discharging middle ear and a right perforated eardrum. These were my symptoms. I had my Ears cleaned by my Ear Nose and Throat surgeon who had seen me since 1988 a had a cleft palate and have very narrow ear canals i have had grommets many times. when i had a 'Lava flow from my right ear'and and had to have my ears cleaned every three weeks.  so in September 1994  when i was 10years old I went in the Mater Childrens Hospital in Brisbane Australia to have exploratory surgery when an hour into surgery they found the culprit a cholesteatoma it was quite big but the surgical team got it all out and my senior surgeorn did my ear drum graft. Now I see a different surgeon because my previous surgeon had retired in 2000. In 2000 i had another infection which resulted in dizziness while i was in high school with the same syptoms this time i had a CT Scan and had middle ear surgery at the Wesley Private hospital to remove the infection and middle ear fluid however this time there was no Cholesteama so my Right Ear canal was widened to facilitate easy cleaning of my ear canal. My Ear nose and throat surgeon had to kneel on the floor in order to get the microscope and suction device in the correct place beacause my left ear was unchanged. Now  i see my specialist at present ever one to two months. Now I have 2 Bone achored hearing aids. becuase i have conductive hearing loss

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