Topic: Aintree, pre-op and spyglass

Hello all

I spoke to Aintree hospital today and they have booked mum in for the 29th july,

they said that the spyglass procedure will be done on the 30th july and the secretary mentioned something about a pre-op assessment on the 29th july,

I asked the secretary whether the dates could be brought closer, and she said that due to the spyglass being a specialist procedure, they don't carry this out weekly and only do it twice per month and due to the delay from our hospital to Aintree- she has just missed out ,

I asked the secretary what the pre op assessment was all about and she advised me to speak with the specialist nurse at Aintree- she said that they do this to see if someone is fit for surgery

I have a couple of questions,

1, does anyone have any experience of the spyglass procedure- I have read that it is very accurate in detecting cc as it can get right into the bile duct, I know that mums bile duct stricture is nearly  3 cm long and its right at the bottom near the pancreas end as opposed to the liver end

2, am I reading too much into this that they may be thinking that mum could be a candidate for surgery- as the intital letter from the MDT said that the surgery of choice in this case would be the whipples procedure,

3, is there any way I can or my mum can request a full copy of the MDT report that wa typed up following on from the local mdt and the mdt at Blackburn , as If they are starting to consider whipples surgery, I would like to maybe have a consultation/discussion with proefessor lodge and maybe do this privately, I am guessing the best way to get a thorough consult is to have the MDT report given to us with all the facts laid out bare

I feel a bit calmer and so does my mum and dad, we still feel upset that the local hospital have messed us around and mum could have been in for the procedure by now and we could be talking next steps or preparing for surgery if that is a possibility.

Re: Aintree, pre-op and spyglass

Dear Moonpie, WOWSER! Great news! When my Teddy was DX his was at the head of the Pancreas in the Ampulla of Vater area and they did a Whipple. You can Google Spyglass Surgery and there is a lot of information on it. Sounds to me like you are headed for either one of those but as you know I am not a DOC. Teddy's Surgeon had to cut the head of the Pancreas to make sure the CC had not spread there and that was 8 years ago, things have come a long way since then. This I do know, the Whipple is the largest surgery to the human body but NOT life threatening. Heart surgery is more life threatening. But one step at a time and this is good news. Bad news is the other Hospital and something should be done. Of course I have a big mouth and I would start with the Manager of the Hospital, nicely but sternly. NO excuse for treating patients  that way. As far as I know most Docs will not do a surgery without a pre-op. I would think you can get a copy of anything you want from any Hospital. May I ask why you want a private session with Prof Lodge? I know I shouldn't ask as its private!! But I think your Mom should be in on things as she may not get as frightened if she understands and hears it from the Prof. I just feel a patient feels more secure when they understand fully.
Well, I tried to answer most as best I could. Do not worry it will all happen as it should. One suggestion...could you call Prof Lodge Secretary and ask to be on a waiting list in case someone cancels?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Aintree, pre-op and spyglass

Hi Lainy

With regards to prof lodge, I don't mean behind my mums back but mean paying privately for a consultation and mum is in full agreement that it would be helpful to have a copy of the MDT reports.  It seems though if you have money you get seen quicker and if we can be seen quicker and get some answers from a top guy then we feel it is money worth spent.

Re: Aintree, pre-op and spyglass

Sad, isn't it, but in a lot of cases you are right. Is it possible to get on a list to be called if there are cancellations. I am very glad she is aware of everything going on, it helps her and it helps you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Aintree, pre-op and spyglass

Hi Moonpie,

Anyone can request their medical notes.  Your mum can apply for copies of hers no problem.  For the private referral - does Professor Lodge consult privately? Even if he does, his professional opinion and judgement should be the same whether you see him via Nhs or privately.   I know what  you mean about money getting you seen quicker and some situations in the NHS, going private can expedite things but CC is so specialist that I'm not sure a private facilty would be the best.  From Gavin's AMMF post about Aintree is looks like that although, the referral has been very badly managed, Aintree is exactly the kind of centre that people with CC should be getting treated. 

Is there no way your mum can be put on the list that runs prior to 30th July or is that the next spyglass date?

A pre-op assessment is where they will go through the procedure with your mum, take bloods, check her medication, general medical history, possibly consent her for the procedure.

Clare

In the stars now . . . .

Re: Aintree, pre-op and spyglass

thank clarem, I will mention to mum about requesting the notes

the secretary said that the spyglass procedure is only done twice per month as it is such a specliaist procedure and piece of equipment

Reflecting back, I think aitnree is best equipped to deal with mum and don't think that getting prof lodge to review things so far wont make a big change, its best for mum to get these further tests done and stick with the specialist team

prof lodge also works at the spire hospital which is private.

thanks for clearing up the thing about the pre-op , as I didn't think they would be assessing for surgery as that has been clearly marked out in her notes and from two teams that they thought surgery would be highly unlikely for mum

Re: Aintree, pre-op and spyglass

Hi Moonpie,

Glad to hear that the ball is now finally rolling and things are moving along with Aintree. Remember to let us know how everything goes there for your mum as well.

As to Aintree itself, personally if it was me that had CC and I was being referred there then I would be very happy with that decision. I did a bit of digging around about them last week and they are certainly doing much good work in treating patients in that area with CC. They are also the first hospital in the UK to launch a CC support group for patients which tells me that they are ahead of many other facilities IMO. I spoke with Helen at AMMF who met the team there very recently and I am sure that she would not mind me sharing this here, but she was also very impressed with the team and the work that they are doing there. That speaks volumes to me as well. Your mum is in good hands there Moonpie.

As to the whole NHS/private thing. Yes, seeing Prof Lodge on a private basis may speed up an initial app in getting to see him, but any treatment that he would then do would most probably be done in an NHS facility using NHS equipment, staff etc. He may work at a private hospital but as I said, most work he would then do if he could would be at an NHS hospital.

Glad to hear that you and your parents are feeling a bit calmer now and I hope that your mums treatment goes well.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Aintree, pre-op and spyglass

hi gavin,

my mum got a 16 page letter from Aintree explaining the procedure and in the letter it also explained that we would be seen by the consultant afterwards and the results from the biopsy from the spyglass will be given that day as they have an onsite lab, mum and dad are very impressed with the facilities and the way they are explaining the procedure

so you are right gavin, feel very lucky to have mums care be dealt with this by this team.

Re: Aintree, pre-op and spyglass

That's great Moonpie. I hope that your mum is starting to feel better now that things are moving and I hope also that the booklet has helped put her a bit more at ease about everything and about being referred to Aintree as well. Getting test results on the same day as testing has been done is hugely beneficial and saves everyone having to go through the scanxiety that we all go through after testing, CT's etc. I hope that all goes well.

Best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.