Yesterday I went to see the gastro specialist at the local private hospital. Despite my discomfort at the blatant queue jumping I felt I had no real alternative as the NHS list meant waiting until June to see the same consultant, something the consultant looked depressed and resigned about when he was told. Realistically this is the only one of the gastro consultants at the local hospital with enough experience of complex cases to see me. Whilst I could put up with the stomach symptoms for a few more months, they and the lack of sleep are having a major impact on my overall condition. So, private appointment felt like the only choice, particularly to allow the kind of time needed to go into the complications EDS causes.
The private hospital phoned in the morning to ask if they could bring the time of the appointment forward by 20 minutes. The neighbour who was giving me a 'Big Society' lift managed to rearrange her work schedule and her daughter's college project plans so she could fit in with the last minute change the hospital asked for. We arrived in plenty of time for the appointment but I wasn't seen until after the original appointment time, something which would be expected and understood in a busy NHS clinic where lots of doctors see multiple patients but less so in a private hospital with one consultant running a well spaced list.
Unfortunately the consultant had not received a referral letter from my GP although the practice had promised they would fax it last week. That always creates a difficult situation for a doctor, so wasn't the best start. I explained that I had Ehlers Danlos Syndrome, that I'd had these particular problems before and then we started to go through a routine set of questions about symptoms. I didn't realise until later that the first alarm bell for me was that the consultant didn't ask what type of EDS I have. A question which might seem unimportant but is vital to ensure the patient doesn't have the vascular type of EDS which typically proves fatal in middle age and carries with it far higher risks for any surgical procedure, however minor, than even the increased risks the other types of EDS produce.
The consultant ran through his checklist at a pace which would have alarmed me in an NHS clinic, but infuriated me in the private sector, the whole point of paying a consultation fee being to allow time to go into the much wider range of problems that having an underlying condition creates. There was no insight into the impact on my other symptoms or how I might be managing as a disabled person. No questions about whether I live alone or have support. All of which I have learnt to expect as standard lines of enquiry from NHS doctors.
The most common gastric problem in EDS patients is probably reduced motility due to stretchiness of the tissues. I currently have a grossly distended abdomen which is markedly worse when I'm standing up, in fact after a few moments upright breathing becomes noticeably more difficult. I've had this problem on many occasions in my life and it always fluctuates along with my overall tone. It's been a particular problem over the last year or so as I've had increased spinal instability in the thoracic region meaning my physio is having to manipulate not just my spine on a regular basis but also do lots of work on my diaphragm which bulges down and out as a result of the spinal instability.
Having raced through whether I had reflux, D and/or V, pain, constipation, etc, etc it was onto a quick physical examination with me lying on the examination couch and no comparison made with standing, something that's particularly important to look at as laxity is the primary cause of these problems and that alters depending on posture. I'd mentioned not eating gluten during the questions and that I get a strange, blistering rash on my feet when I do eat wheat or gluten. That was dismissed as dermatitis herpetiformis 'only' occurs on the legs. I have no medical training and am certainly not qualified to say what kind of rash I have, but this was another alarm bell for me. If there's one thing we EDS patients are reliably good at it's having bodies which do things that are far outside the 'only'. Hips or larynx's generally don't dislocate without severe, extreme trauma such as a blow or car crash, except in people with EDS who don't require any actual trauma to dislocate pretty much anything. A doctor unable to cope with the leap in thinking required to understand how a body does things that are supposedly impossible is not a good doctor for EDS patients even though they may be exceptionally skilled in their own particular field.
There was much mention of stress, depression, anxiety, upset and IBS and no mention of the things that are most likely at the route of the problem, laxity and motility. Well, no mention from him. He did know that people with EDS often have problems with the valve at the top of the stomach not closing properly though, but didn't seem to make the leap to the broader understanding that the laxity affects the entire gastric system not just isolated valves.
His initial opinion was that it could be gall bladder, inflammation, or IBS but that bloods, ultrasound and cameras up and down would be needed. All sensible investigations to make, but in an EDS patient who's as lax as I am reporting that this is a lifelong problem it's approaching the problem from the wrong angle. I gave the name of the specialist gastroenterology Professor at Barts who sees lots of EDS patients but that wasn't noted down. The consultant asked if I had a specialist for my EDS and I explained that Professor Bird had recently retired, and that I was now being seen by a local rheumatologist, but that he had only had the chance to meet me once. I thought it best to omit the local rheumy had looked like a rabbit in the headlights his 'oh crap I've never seen a patient like this' fear was so obvious. The consultant insisted he'd be able to get everything he needs to know from my local rheumatologist which is again worrying as the local rheumatologist made it very clear that a patient with my severity of EDS is far outside his realm of experience.
And that leaves me with a problem. I actually have complete faith in my local rheumatologist; his lack of knowledge is not an issue as he's the type of doctor to enjoy learning and capable of rapidly thinking outside the box. This particular gastric consultant is considered to be expert in his field. I have no reason to doubt that, he saved the life of a friend many years ago, and were I a 'normal' person I would have complete trust in this consultant. However, what I doubt is his understanding of the potential for an EDS body to behave in ways supposedly contrary to medical science and adapt rapidly and accordingly. In the past I've been on the receiving end of too much failed surgery compounded by too much surgical ego* which first blames previous doctors, then equipment, then the patient before labelling them as 'mad' whilst never considering the problem might be with the reasons or methods for performing the surgery and I'm not willing to ever be placed in that position again.
The biggest problem caused by going without a correct diagnosis and becoming a 'heartsink' patient is that it destroys the ability of the patient to trust their own instincts. Medical students are still taught that the patient will tell them the diagnosis if they ask the right questions and listen well, for good reason, the clues to what the cause of a problem is are almost always there in the patient's answers. We all know the difference between when we are really unwell and when it's just 'manflu' as it's something our bodies tell us, but years of being told there is nothing wrong regardless of what symptoms are reported undermines that natural instinct and creates a confusing situation where the patient doesn't trust what their body is telling them or what the doctor is saying so loses the ability to report the correct symptoms in an appropriate manner.This leads to a vicious circle where it becomes far more difficult for the doctor to sift through the reported symptoms to prioritise as the patient doesn't know what's normal or not and leads to much frustration and difficulty for both patient and doctor.
I've been diagnosed long enough now to start having the confidence to trust my own instincts again, and right now they are screaming at me that however excellent this particular consultant is, he is not the right kind of deductive thinker to treat someone who's body works contrary to the norms. I need to be treated by someone like Dr Freak Clinic who says he throws away all his taught medical knowledge and uses logic to work out how a body which is built differently to 'normal' might be going right or wrong.
Which basically means I'm fucked. Going privately again is out of the question, at least for now. I still had a little extra DLA money from the months I didn't have to pay gas bills and that will be used to pay for this consultation. If Professor Bird were still working within the NHS it would be relatively straightforward to get the local consultants to write or phone him for advice, but that is much more difficult now he has retired and not been replaced at Chapel Allerton. Fortunately a wise friend has suggested I could ask my GP to write to the expert Professor based at Bart's which is excellent advice as the local consultant is definitely not the type to accept a high level of expert knowledge from a patient but will hopefully be more open to that insight from a fellow professional.
*to be fair to the surgeon in question, he was the only doctor involved in my care to give me any kind of apology after I was diagnosed with EDS and would admit in private if not public that he let his ego get in the way of the patient's best interests. He has also drastically altered his surgical practices and particularly eligibility for surgery based on the mistakes made in my care and now does 95% less of that type of surgical treatment. A result which is far more important to me than any compensation payment could ever be.