One year on...

[Guest guest]

Hello again everyone.

It's been a while since I last posted - haven't really felt that I

had anything useful or interesting to say, and certainly most of the

questions that are asked by the newer members of this Forum seem to

be answered with much authority, so I've been keeping a low profile

as they say.

However, it's now time, I feel, to add my two-pennyworth if for no

other reason than to celebrate the fact that it was exactly one year

ago that I had my CWD operation (here in England) and have lived to

tell the tale.

The past year has NOT been entirely straight forward from a progress

point of view. In spite of going to extreme lengths to keep the

mastoid cavity of the affected ear dry and clean, I have encountered

several infections, which are troublesome to say the least and

necessitate additional visits to ENT at my local hospital.

I last had a hearing test two months post operation, which

conclusively revealed a serious hearing loss on that channel. To

all intents and purposes I am totally deaf on that side, and, as

previously stated on more than several occasions, troubled with a

tinnitus which unfortunately has taken over my waking life.

The tinnitus, which is confined to that ear only, is a pretty good

pointer that " something is going on " meaning that when sound levels

increase beyond the norm, I can predict with some certainty there's

another infection on the way.

For most of the 68 years of my life I have slept with the right side

of my head on the pillow - the " problem " side.

Since the operation, I have tried to avoid doing this because the

area around the ear is still VERY sore.

Unfortunately, of course, what happens in my sleep is that I

invariably turn over to that side (habits of a lifetime are

difficult if not impossible to break) resulting in

eventually 'coming to' with a head full of pain and feeling very

unhappy with the world at large.

I welcome any questions or comments that anyone may care to raise.

Keep smiling and thank you to this Group for all that you do to so

many.

[Guest guest]

Hi ! My situation is similar in regards to the sleeping on one side. I am only 24 but the "problem ear" has always been my sleep-side preference. I was 14 & 15 when I had my removal attempts - the CWD was done at 15. I had problems staying on my "good side" when asleep and the area stayed tender for quite some time for me also. My solution at the time was to sleep with my arm at the top of my ear to raise my ear off the pillow.

Recently (August) I had a typanoplasty done and ran into the same problem again. The surgical site is at the top of my ear this time though which is where I place my arm to keep my ear from touching my pillow!! My solution now is to sleep with an extremely soft pillow and stay on my "good side" as much as possible. I go thru a lot of ibuprofen!! If you come up with a better solution please let me know!!

Thanks!

petergeralduk <donningtonart@...> wrote:

Hello again everyone.It's been a while since I last posted - haven't really felt that I had anything useful or interesting to say, and certainly most of the questions that are asked by the newer members of this Forum seem to be answered with much authority, so I've been keeping a low profile as they say.However, it's now time, I feel, to add my two-pennyworth if for no other reason than to celebrate the fact that it was exactly one year ago that I had my CWD operation (here in England) and have lived to tell the tale.The past year has NOT been entirely straight forward from a progress point of view. In spite of going to extreme lengths to keep the mastoid cavity of the affected ear dry and clean, I have encountered several infections, which are troublesome to say the least and necessitate additional

visits to ENT at my local hospital.I last had a hearing test two months post operation, which conclusively revealed a serious hearing loss on that channel. To all intents and purposes I am totally deaf on that side, and, as previously stated on more than several occasions, troubled with a tinnitus which unfortunately has taken over my waking life.The tinnitus, which is confined to that ear only, is a pretty good pointer that "something is going on" meaning that when sound levels increase beyond the norm, I can predict with some certainty there's another infection on the way.For most of the 68 years of my life I have slept with the right side of my head on the pillow - the "problem" side. Since the operation, I have tried to avoid doing this because the area around the ear is still VERY sore. Unfortunately, of course, what happens in my sleep is that I invariably turn over to that side

(habits of a lifetime are difficult if not impossible to break) resulting in eventually 'coming to' with a head full of pain and feeling very unhappy with the world at large.I welcome any questions or comments that anyone may care to raise.Keep smiling and thank you to this Group for all that you do to so many.

[Guest guest]

---

Hello there, wow, I could have wrote that except that my CWD surgery

was only a month ago. I also have SEVERE tinnitus in the ear and it

drives me nuts. So far there has been no infection. I am so glad that

you wrote in because a lot of times I post and no one answers. Do you

have to irrigate your ear? Does it hurt? I keep cotton in mine at all

times, do YOu? Did it hurt when you had your first post-op hearing

test? Do you have a hearing aid? Sorry for so many questions, but I

am so curious. I was a right side sleeper, but due to extreme

soreness from that ear I cannot lay on it yet. Although I did wake

myself up one night, guess I must have rolled over, and boy did it

hurt. Do you know of anything that helps the tinnitus? I try to sleep

with the T.V. on, but half of the time I cannot hear it unless it is

really loud and it drives my hubby nuts. Oh well, glad to hear you

are ok and if you could answer my questions I would appreciate it,

because like I said a lot of times I do post but no one answers me.

Thank you, Charla

In cholesteatoma , " petergeralduk "

<donningtonart@a...> wrote:

>

>

> Hello again everyone.

>

> It's been a while since I last posted - haven't really felt that I

> had anything useful or interesting to say, and certainly most of

the

> questions that are asked by the newer members of this Forum seem to

> be answered with much authority, so I've been keeping a low profile

> as they say.

>

> However, it's now time, I feel, to add my two-pennyworth if for no

> other reason than to celebrate the fact that it was exactly one

year

> ago that I had my CWD operation (here in England) and have lived to

> tell the tale.

>

> The past year has NOT been entirely straight forward from a

progress

> point of view. In spite of going to extreme lengths to keep the

> mastoid cavity of the affected ear dry and clean, I have

encountered

> several infections, which are troublesome to say the least and

> necessitate additional visits to ENT at my local hospital.

>

> I last had a hearing test two months post operation, which

> conclusively revealed a serious hearing loss on that channel. To

> all intents and purposes I am totally deaf on that side, and, as

> previously stated on more than several occasions, troubled with a

> tinnitus which unfortunately has taken over my waking life.

>

> The tinnitus, which is confined to that ear only, is a pretty good

> pointer that " something is going on " meaning that when sound levels

> increase beyond the norm, I can predict with some certainty there's

> another infection on the way.

>

> For most of the 68 years of my life I have slept with the right

side

> of my head on the pillow - the " problem " side.

>

> Since the operation, I have tried to avoid doing this because the

> area around the ear is still VERY sore.

>

> Unfortunately, of course, what happens in my sleep is that I

> invariably turn over to that side (habits of a lifetime are

> difficult if not impossible to break) resulting in

> eventually 'coming to' with a head full of pain and feeling very

> unhappy with the world at large.

>

> I welcome any questions or comments that anyone may care to raise.

>

> Keep smiling and thank you to this Group for all that you do to so

> many.

>

>

[Guest guest]

>

> ---

> " ....Hello there, wow, I could have wrote that except that my CWD

surgery

> was only a month ago. I also have SEVERE tinnitus in the ear..... "

Hi Charla

Thanks for your response: I'll do my best to answer the queries you

have raised but you should understand, please, that I am not

medically qualified, so I can only discuss my own experiences and/or

pass on informed opinions that I myself have received from the

various medical sources I have consulted since having these problems.

First of all I think it is widely accepted that the downside (for

want of a better expression) of the CWD surgical procedure is that

the cavity is more prone to infection. My own surgeon urges that I

go to great lengths to ensure that I keep the ear cavity dry, so

showering and washing my hair becomes a major operation. (As an

aside, I have now perfected the technique of stuffing my ear full of

cotton wool before going into the shower, placing my right index

finger over the packing as added protection, then washing my hair

with my left hand only.)

You should ask your own doc whether it's sensible for you to keep

cotton wool in your ear all the time. My understanding is that you

should allow as much air as possible to circulate, so perhaps it is

unwise for you to do this.

My own ears produce a lot of wax, so I need to have the cavity

suction cleaned more often than most folk. I can usually tell when

it's time for another clean-out because the tinnitus in that ear

will suddenly increase in volume (Not a very scientific explanation

I'm afraid, but that's the way it is.)

It is interesting that you seem to achieve some relief by having the

tv on. Most tinnitus clinicians suggest that sufferers should

experiment with what is known as " masking devices " ie, the tv,

gentle background music, or by using one of those little battery

driven devices you can buy (here in the UK anyway) which make the

sound of waves crashing on the shore, bird song, white noise and so

on, but in my case, extraneous " noise " , no matter how beautifully

contrived, only adds to the problem - so in my particular case the

quieter the environment, the easier life becomes.

I remain convinced, however, it was the cholesteatoma in the first

place which caused the nerve damage and the severe tinnitus I

suffer. It is the opinion of my ENT surgeon that he added to the

problem because of all the drilling into and around the skull area

that took place during the surgical process. He's sorry, of course,

but that is the nature of the beast. (The cholesteatoma I mean, NOT

my surgeon!)

So, that explanation seems logical to me; after all said and done

tinnitus is caused by damage to the hearing nerves, and

cholesteatoma, as we all now know can do an awful lot of harm to

one's hearing mechanism.

Charla, I hope this is of some help, but please come back with more

questions if you'd like me to expand on anything I've mentioned.

Best regards, .