advise needed

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Afternoon All, 

Looking for a little advise, my last update on here I explained how I had the IPPS test and was now awaiting surgery date. Well the test was over a month ago now and the hospital have had two MDT meetings since. I am yet to receive a date for surgery as I'm sure you are all aware this is increasingly frustrating. 

My hours have been reduced at work to only 4 hours a day now, they tried to keep me off sick but due to the depression if I was to stay at home I'd go even more insane. Anyway Im going off topic, after speaking to the hospital today after pounding them for an update all the time. They have now told me I need to wait for an appointment to see a clinical team before I can get a surgery date, has anyone had one of these appointments and know what and why I need to have one? 

I haven't heard of anyone else having to go to one of these meetings, its not with one person but apparently a team. its not like I'm going to say no to surgery I'm going mad and deteriorating day by day. 

any advise or help would be greatly appreciated, I really thought I'd have my surgery date by now but it just never seems to coming and I'm getting worse and even more depressed! 

 

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  • Posted

    Ace..Im pretty sure you are not from U.S. but doesn't really matter; I don't think those who operate on us for Cushings quite understand the turmoil and devastating symptoms each of us endure. I only know that with my first pituitary surgery, I would have what I called a "Cushings attack" and I knew if i was going to have another one I wpuld have died. We know our bodies. I was so sick I had my mattress laying next to the bathroom door I was that sick. You say you are still trying to work. If they are scheduling a meeting it more than likely is they are planning their approach for the surgery, this is a very delicate surgery. Plus it's good to know you have a "team" working on you. I am praying for you that the drs will get this meeting set up so you can start toward a speedy recovery.

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    • Posted

      Thank you for your response, what did you experience with the "Cushing attack" other than the sickness?? It sounds like you have had a pretty rough time with it all too.

      I have seriously bad stomach pains nearly everyday that get worse when I eat and at night time, Is this another system of Cushing disease??

      They don't understand at all, I'm on no medication and they won't allow me to go on anti depressents as it will mess with the hormone imbalance. I am still working and even though they are extremely supportive I know they want a date for surgery as I have gone a police officer to someone sat the office 4 hours a day with people trying to find me stuff to do. I hate it.

      Today i got the news that I'm yet waiting for another appointment and I haven't left my bedroom since coming home from work. I just know anyone else who has had to meet a team before surgery so wondered what it entailed.

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  • Posted

    Hi Poor you having to wait for so long.  I had a pre-surgery appointment too.  A team of medics who will be responsible for you pre, during and after the op.  They will as far as I was concerned explain to you again what they are going to do, check that the aenethatist is happy for you to be given a general anaesthetic.  Sorry about the spelling.  Blood will be taken and you will also have swabs taken to make sure that you are not going to bring any nasties into the ward.  These are in your mouth, nose and groin.  They will explain to you how you will feel after the op and what to expect.  It is a very worthwhile meeting so grin and bear it.  You will soon be having your op.  Let us know how your  meeting goes so that we can give more advice to others on your journey.
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    • Posted

      Thank you for your reply. So am I right in thinking that this meeting beforehand that she said was a clinical meetings is essentially my pre op meeting?

      I'm just confused as I don't understand how I am to have a pre op appointment without an operation date the Secretary said I have to have this meeting before they book surgery date.

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  • Posted

    Yes it is really so that everyone knows what everyone else is doing!  It saves time on the actual op date.  Just relax knowing that you have a good team taking care of you.  Hope you get an op date soon!
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