Re: Anyone here from the UK?

[Guest guest]

Hi Steve,

Yes I'm in the UK, whereabouts are you?

Graham (35)

West Sussex

UK

At 09:37 09/02/2004, you wrote:

>I'm thinking everyone here is from US but perhaps there is somebody else

>from the UK besides me?

>

>Steve

[Guest guest]

Hi Steve,

Yes I'm in the UK, whereabouts are you?

Graham (35)

West Sussex

UK

At 09:37 09/02/2004, you wrote:

>I'm thinking everyone here is from US but perhaps there is somebody else

>from the UK besides me?

>

>Steve

[Guest guest]

Hi Caroline,

I have a consultant in North Manchester ... I'm in Burnley, Lancashire.

If you arnt responding to Pred what are you currently on? How bad are your aches?

Steve

Do you know anyone who would like to earn an extra £200 - £2000 per month in their spare time or retire early with a lifestyle of their dreams? If so, pass on my web address www.realearners.com

-----Original Message-----From: Caroline Baylis [mailto:caroline@...]Sent: Monday, February 09, 2004 2:07 PMStillsdisease Subject: Re: Anyone here from the UK?Hi SteveI'm Caroline (C 2) and I live in Oxted, Surrey in England. I've been ill for about 18 months and 'probably' have AOSD. Not confirmed as I didn't react positively to prednisolone last summer and that confused the doc. Where do you go to see a rheumy? I was going up to UCH in London but am trying to get treatment nearer to home. As yet I've had no luck in finding anyone helpful. Where in the UK do you live?C 2On 9 Feb 2004, at 09:37, wrote:

I'm thinking everyone here is from US but perhaps there is somebody else from the UK besides me? SteveVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

>

> I was wondering if anyone on here is from the UK? What part of the UK are you

from? Have you had surgery yet? And what was the outcome?

> Sorry for all the questions, it's just i'm due to have my first op on the 19th

of this month and am interested to find out what other peoples experiences in

the uk are like. Unfortunatly we don't have a choice who we get to see in the

UK.

>

> Thank you.

>

Hi

I am from the uk but am a surgeon.

You do have a choice- your GP should be able to refer you to someone with an

interest in ear surgery and cholesteatoma, (although they may not know who that

is.) Alternatively when you have been seen by ENT they may have cross referred

you to someone with an interest in this subject.

Hopefully this has taken place and I hope your op goes well.

[Guest guest]

Hi Simone,

I'm from the UK, based in Middlesex - had 2 surgeries for acquired

cholesteatoma. One last year at Central Middlesex and one 6 years ago at

Northwick Park. My experience of the surgery has been good. Both times I had

advanced disease that required a 4-hour op and I've recovered well both times.

Don't expect to have any sort of follow-up directly with your surgeon.

Experienced ENT surgeons tend to be tied up doing surgery most of the time; it

is unlikely that you will see your surgeon in clinic afterwards.

IMO the most important thing to be aware of is aftercare. ENT services in the UK

are massively oversubscribed and you may sometimes find you'll be seen in clinic

by junior staff who don't know about the condition.

My tips for navigating ENT aftercare in the UK:

Don't allow yourself to be discharged after surgery without first getting a

confirmed appointment to have the packing removed from your ear canal. In my

experience ENT clinics delay booking, so a 2 week appointment becomes a 4 week,

2 months becomes 3. It is important to make sure this first post-op visit is in

a clinic served by one of the senior ENT staff, and is timely.

Make sure you manage your follow-up. When you're seen in clinic you will find

that over time the staff may increase the length between appointments to 6

months then 12 months. This may be OK if your condition is well-managed.

However, if you ever have to visit A & E on account of post-op ear infection then

the length of time between clinic visits is too long and you should let the folk

in your hospital ENT practice know.

Don't cancel appointments and make sure your employer knows well in advance when

you have an appointment. If you have a high-commitment job you need to let your

employer know that your ENT appointments are sacrosanct.

Always let juniors / students have a look... Sometimes you'll be asked this when

you're being seen in clinic and the ENT doctor is peering in your ear through an

otoscope. The more people in your hospital get to know about the condition and

its after-effects, the better your experiences will be over the term.

Don't get frustrated. I've been going to the same clinic now for 7 years and I

often see folk complaining about clinics running late. The people who work in

ENT clinics in NHS hospitals are usually committed and hard-working people who

have to put up with a lot.

Its not all doom and gloom though. My local hospital trust is a big metropolitan

area trust and you may have different experiences where you are.

Hope all goes well with your op on the 19th.

Garry

>

> I was wondering if anyone on here is from the UK? What part of the UK are you

from? Have you had surgery yet? And what was the outcome?

> Sorry for all the questions, it's just i'm due to have my first op on the 19th

of this month and am interested to find out what other peoples experiences in

the uk are like. Unfortunatly we don't have a choice who we get to see in the

UK.

>

> Thank you.

>