Hello all!
name : Jo
gender : male
age : 31
I have been lurking around this forum for the past 4 months or so and the first thing I want to say is thanks!
Reading about
other peoples experiences has been invaluable to me as I don't know anyone that can relate to what I've been through, and what I've been through has been nothing short of an ordeal.
I had initially promised myself I would not post unless I had an absolute home-run of a story to tell you all. I've read enough whiney conclusion-less rants over the years and want to provide you all with something positive. I have not yet fully conquered my Bruce Lee style personal demon, but all is not lost, and the day I do I solemnly vow to tell you all about
it. For the time being Ive decided to break my silence as I do have some positives for you, that certainly if I could go back in time and convince my past self of said positives he/I (getting a bit sci-fi here, sorry) would be extremely grateful.
I developed gerd/lpr (not sure which to be honest no one ever really cleared that up for me) 5 years ago and to put it bluntly it completely effed up my life. My career went to crap, my social life down the pan and my self esteem was at an all time low. The drugs never did much for me, the searing pain/nausea was excruciating at times, sleeping became a traumatic experience (waking up in pain EVERY NIGHT after 3-4 hours is not the one). I found I put on weight because the act of eating was the only (temporary) respite (10-15 mins) I could find, also the reflux made my throat balloon in size (double chinsville) which left me mortified as I am completely vain. The toughest thing about
this condition for me is the fact that no one around you understands and even the ones closest to you struggle to remember even once you've explained it to them many times. After a while you can see them tire of you referencing it and cant help but see it as you moaning. I've lost track of the number of occasions (birthdays anyone) in which everyone around you is happy and relaxed and expect you to be the same despite the fact that you're in agony on the inside. There's a social stigma attached to chronic medical conditions I suppose. A big topic that I am not equipped to tackle.
Until this year of 2014 I could not afford to go private having received little help from the NHS. I had multiple GPs in London deny me specialist treatment and turn me away, giving me broad answers and looking at me blank faced until I left their office. I live in East London and it seems the GPs here are completely overloaded and struggle to give a crap unless you're basically dying. My pre-op demeester score turned out to be 67, which I'm told is crazily high, so their treatment of me was outright cruel. I don't know at some point I think I will chase it up and write letters. Eventually I went through my family GP in Southampton and he was more helpful. If I could go do it all again I would have gone straight to him but by the time I started to get somewhere with him I had lost patience (I was desperate for relief) and went private and which was much, much easier and faster (and pricey, oh my days, probably £18,000 including the op). I opted for the Linx despite my private GP (Dr Wong, Kings College Hospital) actually recommending me the Nissen, calling it the gold standard anti-gerd procedure and sighting unconvincing statistics regarding the Linxs' success rate. I should say, Dr Wong was a great help to me, guiding me through the diagnosis, he's very good at what he does and I think by recommending me the Nissen he was playing it safe which is understandable. My feeling was that despite his recommendation, the Linx was still a better option (the fact that the Nissen needs to be re-done every 15 years or so is a joke to me) so I asked him to recommend me a surgeon who performed the Linx Management procedure. The surgeon he recommended was Mr Ameet Patel (Kings College Hospital). Mr Patel has an impressive online bio and along with him being confident he could fix me, it was enough for me and I went ahead with the procedure in June.
So here I am at 3 months and 2 weeks. I recently had a second PH study done which I will hear about
on December the 15th so Ill get back to you on that.
What I would like to say about
my Linx experience so far is that the recovery is a VERY gradual process, like, don't even bother analysing your symptoms too much in the first 2 months, mine were all over the shop. I swear I had reflux still (or symptoms that were very similar) for the first couple of months and swallowing was really difficult too. I used to have to hug a toilet bowl and spit up all this thick saliva for 10 mins every other day. Dysphagia is no picnic, and I suspect mine still needs another month or 2 at least until it clears up. Plus points for me - my breathing had gone from painful and laboured to almost completely normal, I can drink booze for a full night out and get away with it and my sleep and lying down is much easier (but not perfect). I can say happily that if I was a gambling man I would bet on a near full recovery in a few months. We shall see chaps!
Main bullet points
If you think you have reflux CHASE it up, don't get disheartened, don't try and tough it out like I did for the first few years, be dogged in your interactions with medical professionals and never be shy when quizzing them. If you think your GP is mishandling you, change them, look up a good practice and sign up to that one. If you can afford it I would begrudgingly recommend you get private treatment (f you Cameron), firstly because as far as I'm aware you can't yet get the Linx done on the NHS and secondly the waiting times for the NHS are bananas (2-3 months wait for each step).
The PH and manometry test seems to be key when diagnosing reflux, far more reliable than a barium swallow, so push for that. It is pretty 'orrible though, tube up the nose never get easier. Dr Wong actually told me the best thing to diagnose reflux is called a 48 hour Bravo (but it costs 6 grand, so no thanks).
If you get the Linx, write off the first 2-3 months (the first couple of weeks were the worst for me, I felt worse than before which COMPLETELY freaked me out) DON'T worry at all about
the potential success or failure of the procedure within that time frame (unless of course you're having severe pain or something, you know, be safe of course). I would say take a month off work if you can, it took a serious toll on me, I don't know how these people move on with their lives after just 2 weeks. Dysphagia (guaranteed for the first 3 months) is a nasty condition don't underestimate it.
um ive run out of energy for now, I hope this has helped, i will try and answer questions
big hugs and kind thoughts
Jo
p.s. side note : Dr/Surgeon secretaries have a tendency to be tyranical power-mad maniacs, try and stay on their good side but sometimes you need to take them on a bit
Post Edited (josin) : 11/3/2014 3:09:10 PM (GMT-7)