Re: had enough

[Guest guest]

Hi Sue.

I was wondering what kind of pills you take for this. I have been suffering

with terrible spasms for the last two days, and my doctor gave me valium

yesterday. It worked. I was so happy. Nothing else seemed to help.

Welcome to the group Sue.

englishgirl55@... wrote:

> hello i am new to this group, i have had this problem now for

> eighteen years, have been dilated had lots of tests, its now after

> last tests been diagnosed as achalasia, i am on medicine for this

> well have been on same one for the seventeen and a half years, they

> do work fairly well although i still get the problem at times, i find

> it can happen with any food or drink, tea coffee, cannot drink pop, i

> do try and ice tea only at lunch time or supper time when i have

> taken the pills, i have to take these pills to eat.

>

> Anyway I have an appointment to see a surgeon 16th of this

> month, then talk what his going to do surgery, then i will have to

> decide if its worth going through that operation.

>

> oh i also cannot eat fruit, if anyone could give me any

> advise on surgery etc i would really appreciate this.

>

> thanks sue

>

>

>

>

>

[Guest guest]

,

I just started Nexium a week ago and haven't had a spasm night or day. For

me, it has been a wonderful drug. I was getting a great deal of spasms

recently.

You have to take it the first thing in the morning.

I hope I've helped.

Gayle

[Guest guest]

Hi--

This is a reply to Sue, who is new to the list. First, welcome! I hope

you find this discussion to be as helpful to you as it has been to me. I

talk about this listserv all the time to other folks, since I have yet to

meet another person with achalasia face-to-face.

You asked about surgery (I'm guessing you mean the myotomy). Lots of us on

this list have had a myotomy, and I get the feeling that most of us are

glad we did, even when we've had some complications here and there.

Personally, I was to the point where I couldn't swallow water before the

surgery. I think I had a loopy belief that this problem would just go away

if I ignored it long enough. Looking back, I can't believe I thought this

way.

Anyway, I didn't find the surgery a piece of cake, but I'd do it again in a

New York minute. (Note: other people on this list have described a much

easier course of recovery than I had, so perhaps techniques have improved

since the early days of the laparoscopic procedure. Or maybe I'm just a

wuss!)

Vicki

[Guest guest]

Hi all,I wrote to this group back in July. I began suffering with constant ear infections 3 years ago back in April I had exploratory surgery and was told when I re-visited my consultant in July I had an extensive cholesteatoma. I was told of all the risks if I didnt have surgery so decided to opt for the surgery as I have been in severe pain, with dizzines and constant ear discharge for months. The consultant put me onto the urgent surgery waiting list and told me I would have to wait 6-8 weeks this was 15 weeks ago!! I understand the nhs has long waiting lists and appreciate all the work they do but just dont how much longer I can put up with this. I have been back

and forth to my gp at least once a week who just keeps prescribing antibiotics and pain killers and doesnt seem to know much about cholesteatomas. I am very worried that the problem is getting worse the pain is unbearable, the discharge is disgusting and sometimes contains blood. I have explained all of this to my gp who doesnt seem to concerned, I just feel I cant cope much longer with this. I really have had enough now and dont know where else to turn if anyone has any similar story or advice it would be much appreciated.thank you all for taking the time to read my message. Leeah

[Guest guest]

Hi Leeah,

Like you I had exploratory surgery in May and only had my

surgery in September, GPs are useless in my opinion, keep fobbing you off with

antibiotics or ear drops! The waiting lists are awful.  Where about in the UK

are you? Hope you get your surgery soon. Have you tried phoning the waiting

list secretary?

My CToma was only discovered when he was in my ear to repair a

retraction pocket. His missed the CToma on the exploratory surgery, how on

earth he can miss it I don’t know! The op took 4 ½ hours!!! He clearly never

lifted my eardrum up.

I would suggest phoning the ENT dept and explain how much pain

you are in and hopefully you can be bumped up the list a little.

Kenna

From: cholesteatoma

[mailto:cholesteatoma ] On Behalf Of Leeah Davies

Sent: 05 November 2010 19:40

cholesteatoma

Subject: re: had enough

Hi all,

I wrote to this group back in July. I began suffering with constant ear

infections 3 years ago back in April I had exploratory surgery and was told

when I re-visited my consultant in July I had an extensive cholesteatoma. I was

told of all the risks if I didnt have surgery so decided to opt for the surgery

as I have been in severe pain, with dizzines and constant ear discharge for

months. The consultant put me onto the urgent surgery waiting list and told me

I would have to wait 6-8 weeks this was 15 weeks ago!!

I understand the nhs has long waiting lists and appreciate all the work they do

but just dont how much longer I can put up with this. I have been back and

forth to my gp at least once a week who just keeps prescribing antibiotics and

pain killers and doesnt seem to know much about cholesteatomas. I am very

worried that the problem is getting worse the pain is unbearable, the discharge

is disgusting and sometimes contains blood. I have explained all of this to my

gp who doesnt seem to concerned, I just feel I cant cope much longer with this.

I really have had enough now and dont know where else to turn if anyone has any

similar story or advice it would be much appreciated.

thank you all for taking the time to read my message.

Leeah

[Guest guest]

Hi

Which hospital do you go to? Exeter, Dereford?

As your local hospital doesn't seem to be meeting your needs I suggest that you

look at other hospitals which you can get to. I personally did my research via

the internet but you can call up. You need a Head and Neck surgeon.

You could see who is at the nearby private hospital and see who the consultants

are and see if the are in the NHS too. Ring the secretary and ask what their

experience is with c/tomas.

Find someone who meets your needs, go back to you GP and tell them you need an

Urgent referral as the c/toma is growing again - go with a short supporting

printout about c/tomas which summarises the seriousness of it. Yes they Usually

do grow slowly but the sooner they are dealt with the better. Remind of smelly

discharge, pain etc. Be short and to the point. Go to the GP with notes jotted

down so you don't forget anything

Be firm. Do not go away with anything other than a referral. You Choose offers

you the right to select the surgeon. Out of area will mean a delay as the have

to get permission but sometimes this is the best way forward

I live in the US now but feel free to email me

[Guest guest]

Hi Leeah

Thought I'd send you a reply since our stories are so similar!

I have had pain/dizziness/discharge for 2 years which the consultants explained

to be a simple ear infection, despite the fact Ive had 4 ops due to

cholesteatomas. Eventually I persuaded them to do exploratory surgery back in

August. Even then they missed my Cholesteatoma completely. FINALLY in September

they found it and assured me they would operate within the next 6 weeks. Well

its been 2 the months and I've yet to recieve anything at all. My consultant

assures me I'm on the list, he just doesnt know when surgery will happen,

although I can just predict it will be in the new year now.

It's incredibly frustrating, whilst I respect the NHS is very busy, like you,

this is driving me crazy! I am in pain and pretty pissed that they missed the

diagnosis for so long, and i definately agree the discharge is vile!

I have been on 12 courses of antibiotics and none of them have worked at all. My

consultant told me the discharge is unlikely to repond them. So probably better

off not bothering with your GP at all.

I hope your op comes through for you soon, all the best. Becca

>

> Hi all,

> I wrote to this group back in July. I began suffering with constant ear

> infections 3 years ago back in April I had exploratory surgery and was told

when

> I re-visited my consultant in July I had an extensive cholesteatoma. I was

told

> of all the risks if I didnt have surgery so decided to opt for the surgery as

I

> have been in severe pain, with dizzines and constant ear discharge for months.

> The consultant put me onto the urgent surgery waiting list and told me I would

> have to wait 6-8 weeks this was 15 weeks ago!!

>

> I understand the nhs has long waiting lists and appreciate all the work they

do

> but just dont how much longer I can put up with this. I have been back and

forth

> to my gp at least once a week who just keeps prescribing antibiotics and pain

> killers and doesnt seem to know much about cholesteatomas. I am very worried

> that the problem is getting worse the pain is unbearable, the discharge is

> disgusting and sometimes contains blood. I have explained all of this to my gp

> who doesnt seem to concerned, I just feel I cant cope much longer with this. I

> really have had enough now and dont know where else to turn if anyone has any

> similar story or advice it would be much appreciated.

> thank you all for taking the time to read my message.

> Leeah

>

[Guest guest]

Hi,

I am sorry to hear about your difficulties.

Unfortunately, it all sounds very familiar.

My last surgery was three years ago, and I suspect it went all wrong. I have

always had some pain in my ear from time to time after this, but it was not so

bad that it was bothering me too much up until a year ago. Then I had the flue

and got an ear-infection. The antibiotics did not seem to work so well and for

the next months the pain got worse and worse. Finally I went back to the ENT in

last week of February. They tried more antibiotics - no effect - and then I had

MRI, ...bla bla bla ... they could not figure out what was wrong and did not

dare to do another surgery on me. They where afraid it might cause more pain. So

I went to another hospital for a second opinion. And then I came to a surgeon

that would like to do surgery.

I came back to the first hospital in witch they had problems advising me to take

the surgery.

Instead they are sending me to pain-specialist who gives me large amounts of

drugs.

Finally I called back to my ENT saying I could not take it anymore and that they

had to transfer me to the other hospital (that is how it works in my country),

because they have more experience in rear cases like mine. I actually cried my

tears out on the phone, and I think that made it more obvious how much I was

struggling. I also asked for a copy of my journal. I would like to see what they

are writing and also have it in case the new doctors I come to don´t have it. I

think that makes them think " why is she asking for it? " .

And we do have a department that take care of patients rights.

You just keep on calling them again and again. My family doctor tells me it

helps.

I hope you will have your surgery very soon. You obviously need it as soon as

possible.

And I hope I will, too.

The best of luck!

Wenche