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> Sue,

>

> I am sorry to hear about your son. I know how hard it is to have

this

> desease, but I can only imagine what the loved ones are going

through.

> My wife ask me to write to tell you if you ever needed someone to

> talk to to please write her at cutshaw@p..., or post a message

> here either one.

>

> She has dealt with my desease the entire seven years we have been

> married. Just remember that God knows all that is happening and he

> does still answer prayers. Hang in there!!!

Sorry for the VERY late response. I've been waiting to hear results

of a second blood test, and we should know something by Monday.

Sue

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Hi Sue,

Just picked up your response - another Wales person!

I'm really pleased to hear that you re informing yourself and now able to

make more empowering decisions for you and your family

I will definately be joining Natural family life group

Take care

Love le

" If you want the rainbow, you gotta put up with the rain. " - Dolly Parton

R & R Strauss Houseofstrauss@...

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  • 2 years later...

Sue, It is only law in the US that children cannot go to school without

vaccines. It is not law that they must just have them in the hosp, etc. Do

you know what in the world they gave you in the hosp when they said you

would die if you did not get it? I cannot imagine what that would be. You

said " silent killer "

Have a great day :) :) :) :) :) :) :)

Bambi

>From: " Amy Lee Waters " <amyleewaters@...>

>Reply-Vaccinations

><Vaccinations >

>Subject: Re: need info

>Date: Thu, 8 Jan 2004 17:32:07 -0500

>

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Actually that's what they would have us believe. But there is no law in the US

that children must be immunized to attend school... every state has an exemption

to allow children to go to school without being vaccinated. They never present

it that way though.

Kay

**********

Sue, It is only law in the US that children cannot go to school without

vaccines. Bambi

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  • 5 years later...
Guest guest

Hello Sue,

well, this certainly puts things in perspective! So you had no symptoms before they found out? How was the brain abcess discovered? And the abcess was completely and only due to a cholesteatoma? No other issues? This is horrifying! Thanks for sharing your story-I wish you well from here on in. Of all the replies yours seemed to hit home with me the most. Don't know why yet. I will ponder that a while. Oh, and can you tell me what a BAHA implant is?

Thank you Sue. Your sharing of your story has meant the world to me.Most appreciated!

Denna Poulos

From: Sue <suethestitcher@...>cholesteatoma Sent: Sunday, July 19, 2009 5:14:40 PMSubject: Re: who regrets having this surgery

HiI just wanted to add my voice to other replies.I had a cholesteatoma which was not diagnosed and therefore I have experienced the effects of not having surgery!I developed a brain abscess and was not expected to survive. I have been very fortunate in that I have survived and have not even suffered any resulting brain damage.I had an emergency mastoidectomy as well as surgery by neurosurgeons to drain the abscess. I was in hospital for almost two months and had to continue on anti-biotics for a further two months. I lost the ability to walk and had to learn again, there were lots of other things too. I had further revision surgery eight months later and have had plenty of outpatient appointments. I'm now just going every six months, this is four years later.So much of my middle ear was destroyed that no re-construction was possible. At the beginning of last year I had the surgery for a BAHA implant and since I have had the BAHA

itself I have been able to cope with hearing so much better.Do not put off surgery, I am extremely lucky that I am still here!Sue

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BAHA= Bone Anchored Hearing Aid

Arun 

On 7/20/09, Sue <suethestitcher@...> wrote:

 

Hi DennaThanks!I had hearing loss on one side but my GP just said it was due to getting older. I had also had a foul smelling discharge for a short while but it stopped and I was told not to worry about it as it had cleared up. I refuse to see that particular GP ever again.

The real trouble started with a terrible earache, the worst pain I have ever experienced. I kept going to the GP and the out of hours service. The last doctor I saw at the GP's tried to get me to emergency ENT clinic at Guy's and St ' Hospital in London but they were too busy to see me because it was the start of the Easter weekend, they made an appointment for me to go a week later. However I became unconscious a few days later my son rang the GP's for advice and then phoned for an ambulance and I was taken to King's College Hospital. Lucky for me that it is one of the top places for neurosurgery, apparently I was operated on quickly but I didn't know anything about it. They sent for a consultant from Guy's and St '. She performed the mastoidectomy whilst the neurosurgeons put a further drain into my brain.

Once things were settled and I saw my ENT consultant she said that the brain abscess was caused by cholesteatoma. I have been shown in subsequent CT and MRI scans where bone was eroded by the cholesteatoma and the infection entered my brain.

The BAHA implant is a piece of titanium implanted into the bone. When it has all healed and the titanium has begun to band with the bone I received the second part, the sound processor, which snaps into the abutment screwed into the implant. I can then hear by bone conduction. I think there are others in this group with BAHAs. Mine certainly makes a big difference to me.

I know that I am here thanks to the skill of the neurosurgeons and ENT consultant who treated me. This was four years ago, the neurosurgeons discharged me a year later but I have seen my ENT consultant many times since, I know that I will always need regular checks with ENT but they are much less frequent now. I don't mind this commitment, they saved my life.

What I have learned is not to give up if you are sure that something is not right. Some doctors pass things over too quickly but we have to trust those who really know. The only safe option for cholesteatoma is surgery.

Thanks for listening, I find telling my tale sometimes helps me to come to terms with what has happened to me! I hope that this helps.RegardsSue

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