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Still no appointment for ERCP under G.A

Posted , 7 users are following.

cupcakes62
cupcakes62

My gallstones kicked off back in January. I went through all the routine procedures for it to be diagnosed I have them in my bile duct. So, an appointment was made for a ERCP to be carried out. As I predicted to the consultant, the local sedation did not work. I was ent home and informed that an appointment would be made for me to have a G.A. Well that was nearly 2 month a go, I am in daily discomfort with nack aches, a pressure feeling in my diaphram area etc etc. I do occassionally have the cramps and pains, which do not last for a few hours but a couple of days. However, because I am not going to the hospital with each very bad attack or going to my G,P, I was told by the surgeons secretary that I am not classed as clinically urgent. The reason why I am not constantly at the hospital is because I would rather be at home than sat in an hospital for a MINIMUM 7 hours having the same old same old tests, being sent home with no meds, because truthfully nothing really works, it may give temporary relief. I now have an appointment with my G.P. tomorrow to see if there are choices for hospital places. My local hospital informed me that the G.A. procedure is allocated one place a month, and cancer patients (understandable) are given precedent isf that placing is required.  So, if anyone has any information about patients rights for going to another hospital for treatment, I would be interested to know. By the way my diet has changed drastically, the only dairy product I have is semi skimmed in tea. No pastries, chocolate, alcohol,cakes, I eat fresh fruit and veg, meat but not anything processed. Plenty of water can get a bit boring so sugar free dilute juice gives it some zest.

1 like, 23 replies

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  • cupcakes62
    cupcakes62

    Posted

    Apologies for some of my misspelling, I can confirm Back aches is what I suffer with.

     

  • hope4cure
    hope4cure cupcakes62

    Posted

    I can certainly identify with your pain. I had stones caught in my bile duct and beleive me it is not an experience I would wish on my worst enemy. 

    Rushed to ER several times the symptoms mimic heart attack. The tests showed no heart attack thank goodness however they never pursued any other cause for the symptoms. 

    They sent me home with pain meds. Until the next attract and wash rise and repeat. it took 10 yrs and 8 doctors to finally make a diagnosis. A gastrointerologist.

    I hope you can get in very soon to have the GB removed . The pain is dibilitating. I don't get the system in the UK. these GB attacks can literally leave you breathless from the pain of a slight breath. Don't let it go to long.

    i hope when you di get in for surgery that your recovery will go well.

    peace & heeling blessings sent ur way!

    in the mean time stay away from fatty foods. And especially hard shelled fruits and veggies and nuts of any kind. Stick to smoothies and protien shakes for a short time . Will be a lot less painful. I know very little about the GB Other than my experiences. 

    • cupcakes62
      cupcakes62 hope4cure

      Posted

      Thank you for your reply. I am at this moment having an attack, it's 4.30am and trying my best to relax hoping the diaphram cramps ease off. The city I live in has a large teaching hospital, and yet last month there was no anaesthetist available, therefore setting procedures back a month. My G. P is writing to the hospital to see if it will speed things up. I live in the UK under the NHS system. To speed the treatment I can go private at a minimum cost of £3000, to be treated at the same hospital. Thank you for your healing wishes, I trying to have calming thoughts at the moment.
    • yvonne86771
      yvonne86771 cupcakes62

      Posted

      Hi, I was diagnosed with chronic pancreatitis last June 19 the firsr specialist had no interest even though my liver scan that detected CP showed s blockage he would not have it He sent for a CT scan saud he would have me back in once he got the results! months passed I was ringing his secretary! finally I recieved my results in a letter Firstly I was referred to as a He instead of a She! the results confirmed CP also a nodule in my lung which he wanted to re x-ray months passed no app I went to my GP he sent me for x-ray ! I was in so much pain ansouloute agony I was ringing receptionist for app At last app for August, I was mortified how i was bring treated This Dr at Wigan also said my condition was caused through Alcohol abuse from 15 year ago ( I haven't drank for 15yr) before he would admit it was caused through this blockage! Anyhow I wash rushed through A&E the week before app ! three was a great doc in Wigan who said he thought the blockage where stones from my gall bladder and we should get that sorted urgently! then I only had my CP to worry about , great I thought getting somewhere, MRI ,urgent , 10 days later no app ,I had been discharged, I rang my fav secretary no help I managed to get through to x-ray that said a app had been sent out and not attended told them I hadn't recieved! eventually MRI goes for results This specialist still days to many inconsistencies I'm in freeking agony on codeine twice a day 4 x day and cocodomol sends me urgent for EUR ? lije an endoscopy but betrer . Right 5 large stones blocking my pancreatic duct and a cluster of small.. Right refer me to Manchester Royal URGENT that was 17 week since ...he didn't put Urgent on my referral which incidentally was lost for over a week!

      my App is next week I've been in Agony on morphine and Orimorphe PRN I'm sick almost every day I've lost over 2 stone In weight , My Doctor wrote an Expidite letter to no avail Ivd now new told having the procedure could be another wait I'm desperate if I had money I'd go private, I work for the nhs this is Horrendous I know the guy at Mcr has app available at his private clinic so why are we in nhs list waiting so long its wrong and it's dangeroys this procedure could have been sorted in a day I could have my life back But because s doctor didn't out on myreferal urgent I've suffers likr hell , my mental state is unreal constant crying ,forgetful , nauseous or vomiting 24/ 7 using orimorphe like s bottle of juice to ease my pain! I'm told go to A&E who will admit me sort my pain and discharge as im o the list!

      I will be putting together biggest complaint ever ! doctor at Wigan I'm not Yellow ! my liver count is going higher n higher And I'm more and more depressed !

      Thanks To You Dr at Wigan !!

  • cynthia89958
    cynthia89958 cupcakes62

    Posted

    If you are in England, approach your local PALS office as they should look into your case and advocate for you. They have worked wonders sorting things for some people on here.

    That said, the 18 weeks treatment rule has no real teeth, I've been ill everyday since Nov and 3 operations cancelled so far, not much they say they can do as one was due to dr strikes and the others staffing. Won't go into my details here - have posted already ongoing.Too many of us are suffering for too long with these issues, it takes it oll on you eventually. You are right to continue with diet moderation in the meantime. Good luck and please update how you get on.

    • hope4cure
      hope4cure cynthia89958

      Posted

      HI Cynthia,

      great advice. Here in the US we go straight to the hospital administration file a complaint and let the insurance companies fight the battle if there is any issue with treatment or we can go see another doc. 

    • cupcakes62
      cupcakes62 cynthia89958

      Posted

      I approached PALS for info, they told me about 18 week rule. I even asked my G. P yesterday if I could be referred to another hospital that carries out more of these procedures, plain answer is NO. She is however going to write to the hospital, she was quite puzzled at the information I told her about the number of ERCP procedures under G. A are carried out. Unfortunately our G.Ps have no influence on hospitals.

    • cupcakes62
      cupcakes62 cynthia89958

      Posted

      In the meantime Cynthia, I wish you a speedy process so you can get back to having a normal daily life.
  • sandrog
    sandrog cupcakes62

    Posted

    Hi, I had the same problem 4 years ago, but one the stones was jammed in the joint where the bile duct and gall bladder meet, I was told it measured 4 centimetres diameter. Apparently this is known as Mirrizzis Syndrome. I went through 6 procedures in 3 different hospitals before they actually got it out. I felt that I had lost 18 months of my life going in and out of hospital. I hope you get your appointment soon, and they do it in one go. All the best Sandrog
  • cupcakes62
    cupcakes62

    Posted

    UPDATE: A couple of week ago I was admitted for two nights in my local general hospital. For 48 hours I ate nothing, only drank water. When I was admitted it was because my liver was giving high readings, even though at the time I had no discomfort. During my stay I was awaiting the gastro-surgeon to visit me. However,  there was no surgeon on the hospital grounds for 24 hours (not knowing this at the time).

    During this long wait with no information, I contacted the private hospital (next door) to enquire about the ERCP procedure done privately. The total cost would come to £2,740 including overnight stay for observation.

    The consultant on my case worked in both sectors of these hospitals, therefore my notes would be refered to quicker.

     After 48 hours I was allowed home after I finally received a visit from the gastro-surgeon, on the understanding I would be re-admitted for my ERCP under G.A on the 7th July.

    ?Yesterday I had my pre-op assessment, and the nurse informed me more in detail  what was happening.

    It would seem that a normal liver reading is 40 or under, my readings have been between 500 to 1200, so obviously that is not good. I am now to be admitted this coming Thursday for my ERCP.

    At my pre-op assessment, the nurse also informed me that the average wait time for the gallbladder removal is 10 week. 

    For anyone out there still awaiting a ERCP, my advice is keep contacting the surgeons secretary for possible dates of ERCP, and keep up with the visits to the assessment ward (not A&E) you may have been sent to by your G.P.

    ?

    • cynthia89958
      cynthia89958 cupcakes62

      Posted

      Hi just noticed yr post - good that things are finally moving forward but sorry your ordeal has been going on. Hope the ercp can ease things for you and your liver readings will soon come down.

      10 weeks does not sound an unduly long w/list for the Gb op. I'm still in limbo as my next op date was cancelled yet again. Have got PALS looking into why this has kept happening for 6 months now, but no response yet. In the meantime I had a 2nd opinion privately and based on that, am looking to move my NHS care to the consultant at the other hospital, unfortunately much further away and I then need to go to the end of their list but I have more faith in them, hope I am doing the right thing as I have already waited so long.

      But thank you for sharing your experiences as there is much to learn on this journey and much we do not get to know. Best of luck for your procedure and recovery, take care.

  • cupcakes62
    cupcakes62

    Posted

    Update: I do not believe it!

    ?This morning my procedure got under way. Then when I woke up I was informed the surgeon could not find any stones in my bile duct. So in the last two week where have the 8 little blighters gone?

    ?Scans/tests/x-rays they've  been there. agonizing pain and cramps to prove it, and now they have just vanished. I now have to wait for an out patient appointment to see what is next.

    ?I just cannot believe this. I had a nosy at the notes about my procedure, and it would seem it only took 12 minutes...12 minutes, my dentist takes longer than that to fill a tooth.cry

    • cynthia89958
      cynthia89958 cupcakes62

      Posted

      That does seem odd- did the doctors think you have passed the stones out of your body? Maybe it can happen?

      I have no experience of this, but I do know the level of pain and illness we feel is not always evident when they do scans and tests, when I've felt at my very worst ever in A & E, all tests came back clear and normal, I could not believe it.

      Where will you go from there now?

    • cupcakes62
      cupcakes62 cynthia89958

      Posted

      I'm just so puzzled. My records have shown my liver levels between 500 - 1200,which of course is way above the normal level of 40. Then there's the pains and cramps, which I agree can't be recorded. For the past few days my urine colour as gone back to normal. Dark orange is a bile duct blockage symptom. I personally thought once they were on the bile duct they were there until removed by ercp. Deep down I'm having thoughts that the surgeon missed them, because they are suppose to be the size of grit. On Monday I'm going to phone the consultant to see if he has any answers, until I get a out patients appointment.

    • cupcakes62
      cupcakes62 cynthia89958

      Posted

      Im still waiting for the letter for out patient appointment. he meantime Im going to make an appointment with G.P this week, see if can get any info.

      ​Gallbladder stones seems such a common problem, reading the night mare stories it makes me  wonder why  the hospitals arent on the ball with this. I have found the biggest problem is lack of communication between departments.

    • cynthia89958
      cynthia89958 cupcakes62

      Posted

      That is so true! The NHS here may be under resourced, however, does not seem to be very well co-ordinated. We often have to keep chasing and it is so exhausting! Hope you get on OK!
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