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spyglass test


dmc236
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thanks for the link anne, it does sound good.

aparentley used a lot in usa but not yet over here, my local centre has ordered the equipment and im waiting for it to arive before we go further, as it may remove the need for a whipples in theory.

just not sure how long they will wait for, because like you i just want the ipmn out now.

i can understand the desire to have this first though as it might avoid major surgery if its available soon enough.

:D

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  • 1 month later...

still tapping my fingers waiting for this test to be ready before we make a treatment plan. getting frustrated to be honest but symptoms not worse so believe me i realise how blessed i am after reading the posts on the forum. many of which are tragic and send me to tears. i hope everyone takes comfort in the support available from this site, just as i do. i dont know how id cope without this link to other people in similar circumstances.my wife is struggling to not be angry and im trying not to put on her too much . so i'm not talking about 'this thing inside me' anymore in front of her. plus i cant let my kids know whats happining untill i know more. thank you pcuk you help more than you realise.

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  • 4 weeks later...

still waiting for the test to be done, first waited for new equipment...then waited for a second doctor to be available, now im told they dont have a theatre available. the test is oredered at a different hospital as they dont do it at the regional centre.

as you can imagine i'm getting very frustrated with my life on hold. not knowing if i will have surery till this test is done or not.


ive contacted pals todayfor help. i dont like to complain but i realy dont want to feel messed about any more.

so if pals cant help i think i will take it higher.

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I think that you are doing the right thing.


It's not the fact of complaining. This is your life, and as everyone on this site knows, things can turn fairly quickly with PC.


You have every right to stand up and say heh - I want this operation, I am entitled to this operation.


Good luck, don't sit back, grab the bull by the horns.


louie xxx

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following on from my complaint via pals yesterday, after waiting since january to have this procedure done.. i had a phone call to say its all booked for next week yay.

at last things will start moving forward a little.

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hi there dmc , well some good news for you at last, sure you must feel relieved and anxious. lets hope your "passenger" [ bri's name for his tumour] gets off at the next available stop eh!

i'm sorry your wife doesnt want or like talking about your situation, i can talk quite happily about things, treatment etc, but then when bri says something like, " well yes ok but i might not be around then!" then i feel awful and ask him not to say things like that, i know its reality, but i will deal with it when i have to, i don.t think i am in denial, just live for the now, we are both fairly positive and i want to continue like that. perhaps if you really want to discuss things with your wife, could you tell her just that and make a "date" to have a discussion? that way perhaps she could prepare herself and come to some sort of understanding, i recall nicki saying that ted was always in denial, but she could deal with that, see we are all differant, just have to find a way to meet in the middle. i.ve rabbitted too long, good luck thinking of you love laura x

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  • 3 weeks later...

well i went for the spyglass, which was coupled to ercp at same time. the procedure was abandoned because of difficulties accessing the ducts with guide wire due to ?stenosis/scarring.

i had review with consultant and he will discuss at mdt, but he feels that they are unable to confirm ipmn in main duct due to acess problems on the test, but the scarring would indicate chronic pancreatitis, which may be caused by the ipmn tumours if they are there or may be ideopathic explaining my symptoms. so he wont operate..said the risks of mortality too high.he also said he wont try re do the test.

the plan is symptomatic relief/pain clinic and ongoing creon for life.

i will also have to attend for repeat scans and bloods every so often to make sure that nothings changing quickly.


bit of a mixed blessing ....im so lucky i realise that the tumours arent growning and i have some future to look forward to again :D

i did hope though for some kind of curative procedure even if it isnt a full whipples as he'd discussed before.

i was terrified of the surgery though i have to admit so over all its positive news and i wanted to share with everyone here . youve all been so supportive. thank you

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Hello Dan,

I'm pleased to hear that you have had the test at long last.

My IPMN's were diagnosed because the duct was getting wider and wider as a result of the growth of the tumours and the production of mucus.

They could see mucus seeping out through the papilla (fish-eye appearance) on ERCP.

I know they are hard to diagnose and it was seven years before the cause of my pancreatitis was recognised.

Luckily your tumours aren't growing. Before the diagnosis I was like you, relying on pain relief and Creon.

The best thing you can do is to be very vigilant. If you notice any worsening of your symptoms, get checked straight away.

Wishing you well,

Anne.

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Thank you Anne....they can't see classic fish eye or mucin hence the probs with diagnosis.all the scans have shown dilated main duct though. I've never been a drinker and not had acute pancreatitis either so its hard to know why I shud have chronic pancreatitis. Seems to be an anomoly but the symptoms are awfull ....as you know.well I will be vigilant and hope the monitoring picks up on any changes soon enough to act. I'm very gratefull for all the advise by the way. Thanks again Anne. Hope you are well :)

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PCUK Nurse Jeni

Hi DMC,


Good news for you at least that you don't have to have the surgery.


Hope all goes well with the surveillance, and as Anne says, just be very vigilant with the symptoms and make sure any changes are attended to asap.


Keep well,


Jeni.

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  • 3 months later...

ho everyone, been a while since i posted. ive had some ups and downs. now on numerous meds, had surgery to cut the nerves from pancreas to help pain. just been for review. they suspect involvment of bile duct and gallbladder now so have to undergo new ct and mri etc. im praying for a good outcome and would apreciate anyone whod like to help me in those prayers. thank you. getting scared again now. dmc

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  • 2 weeks later...

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