Dysphagia

[stuart39]

For all those no more panic friends out there that are at the end of their tether with an ongoing swallowing problem I aim to post some helpful feedback on here shortly as my GP has now given me a new referral for a round of fresh investigations at my local swallowing clinic.

After more research there is another procedure (more of an assessment) called Fluroscopy some of you may have had one some not. You sit with a speech and voice therapist who specialises in swallowing problems and they watch you eat whil;st the whole thing is recorded on x-ray video.
You are asked to eat various foods that are all coated in barium (nice!) and these show up on the video so that it can be played back in detail. a bit like a barium swallow but its a bit more thorough I would say. This will show the full swallowing reflex using a range of solids and liquids and should I hope pinpoint my particular problem. I get the feeling many ENT health specialists would prefer to palm sufferers off with a feeding tube or a life of puree'd food! i think youve got to push for your investigations until a satisfactory diagnosis is made.

anyway my approach to this long standing problem is not to go in and let the medical team tell me whats what. Obviously I will listen to them but this time round I am going to be far more assertive about my wishes and what tests I want. We all pay into the NHS with our taxes so why shouldnt we get a thorough service back out of it!

in doing all my research I am staggered to learn how many people suffer from problems with their swallowing when I thought it was just me about 3 months ago!

anyway i am seeing the consultant on 23rd June which is quite soon considering we hear about long NHS waiting lists but I will update on here what tests are agreed and again when the tests have been carried out any diagnosis.

Having suffered with this socially disabling condition for over 25 years, I want to be able to offer some solid advice to other sufferers about how they can possibly be treated and get their lives back on track because its miserable suffering this largely in silence.

There are far more investigations available for these conditions than just barium swallows and endoscopies!

[neptuno]

Hello Stuart !
I've had this test done - I found everything works OK but just a bit more slowly than usual due to muscles at back of throat being slightly flattened. Speech therapist recommended some exercises (like starting to yawn) which makes the muscles more rounded. Its not a quick fix and realistically it's not made any difference and I'm still having problems. I'm very interested to learn how you get on.
Be kind to yourself

[stuart39]

my approach is going to be on the basis that ive done my research and i will tell the consultant this and make sure that he or she is aware that i have quite a bit of knowledge on the subject which can only assist the medical team in making a diagnosis.

i will be pressing for the next test if the preceding one proves normal.then the next then the next until we find something.

it may turn out that there is no physical problem and we end up going down the CBT or hypnotherapy route. i'm not totally convinced that hypno is of an real help but my feeling is that there is a tightened or restricted area in the pharynx region. i am hopeful that the fluroscopy will show then the cack handed way that i am currently eating pocketing food at the sides between my cheeks and teeth and swallowing single sized mouthfuls in 3 or 4 small swallows as opposed to one swallow. this is what makes me so slow at meal times.

[stuart39]

went to see the consultant today who I am glad to say showed a fair bit of interest and agreed to progress with some fresh investigations.

i had a quick naso-endoscopy in the consulting room, not great, a thin flexible endoscope is passed up through one nostril to the back of your thoat which does agitate a fair bit as youre asked to swallow and make heeeee noises!! he said my tonsils are slighter on the larger side and it might help if these are removed but he also agreed to refer me for fluroscopy but he felt that an assessment with a senior consultant and their swallowing & speech therapy specialist in the first instance might help pinpoint the problem. he said the muscles in my neck did seem tensed up - maybe some muscles have just become lazy. i cannot explain that. Perhaps there isnt a physical/anatomical problem afterall (apart from maybe the tonsils) but i came away feeling like i'd made some positive progress. the thought of going back to a normal life and eating normally without thinking about it gives me quite a buzz and my social life will change overnight.

this speech therapy stuff sounds a bit like witchcraft to me and to be honest at this moment in time whilst intrigued and willing to participate (what have i got to lose), i wont hold my breath that it will help. can therapy be that effective? it wasnt explained what the therapist would do with me exactly so i will have more info on that next time i report. i go back in 3 weeks.

to anybody else with similar problems do what i did if you tend to forget everything once your asked into the consulting room, sit in front of your computer at home and make a list of every symptom you have and potted history of the problem with any prior tests/dates and other related info. i printed mine off on 2 sides of A4 and handed it to the consultant explaining that without doing this i was bound to forget to tell him something that could be vital to his assessments. he found it quite useful and certainly didnt feel like i was trying to tell him how to do his job. he asked if he could keep the notes and these are now on my file.

i think the consultant said the therapist will perform a "fees" or "feas" test-i may have misheard him on that. if anyone knows what this is, do let me know. do they watch how you eat food?

[stuart39]

FEES test- I have just found out what this is now =

Fibreoptic Endoscopic Evaluation of Swallowing.

A small endoscope is placed in the mouth whilst the patient is asked to eat-this is then viewed on a screen by the consultants. I aint looking forward to this but needs must!

[stuart39]

had the FEES test today and not too bad.

after a brief chat with the consultant and speech and swallowing therapist the exam began. i was sat in a comfy chair and a small nasogastric tube with a camera on the end was inserted into my left nostril-it wasnt painful but i wouldnt say it was fun either. the camera is pushed in so that it can sit just above and view the back of the throat and once in place the discomfort soon passes although your eyes might water up a bit-they give you a tissue for this. you can see the image on a video screen which isnt great seeing your own insides but it helps to understand what the doctors are telling you about their observations.

i was given a cup of water with blue dye in it and asked to sip it a few times. the swallowing felt a bit odd with having the camera hovering just above the back of the throat but it went down no problem. i was then given a chocolate digestive to eat and again no problems. the test took less than ten minutes to complete. they reckon the motility is all fine.

the upshot was that the tonsils are fine but the muscles at the back of the throat look quite low when they should actually be higher creating more space in the pharynx area where the food passes through. the speech therapist has suggested a couple of throat exercises to stimulate the muscles involved and so i was discharged until august when i will go back to see if the exercises have made any improvements.

at the moment i cant see these making a blind bit of difference but i said i would give them a go. 10 times a day a few minutes a time.

will update as and when for those in a similar boat to me.

[nomorepanic]

Stuart

Will the exercises help with just that general feeling you can't swallow problem as well?

Thanks for keeping this thread updated with your progress as well.

[stuart39]

i needed to update this thread today before i lose the plot.
i was offered a job about 9 days ago after being out of work for about a year (self-employed) and was due to start today. a good salary, excellent benefits, local commute, nice office, 9 till 5 monday to friday and a nice boss etc etc. it couldnt be better yet the time came to get washed and dressed and leave for my 1st day today and after sitting down in front of the TV i couldnt do it. i wasnt watching the TV it was just on and i was sast there thinking about all the reasons why i should not bother. i had a poor nights sleep tossing and turning thinking about eating sandwiches in the office next to colleagues and out with customers for lunch or entertainment. its also not unusual to be taken out to lunch with the boss on day 1 in this industry and i was dreading the whole thing. i emailed my new boss an excuse quoting a family member being taken ill and she was fine suggesting my start date could be moved back.
i feel like a complete fraud and this eating disorder has made me into a person that i hate. i cannot relax with people when food is in the offing or on the agenda. nights out for meals or bowling or just socialising are just alien to me and have been in the 30 odd years I have been harbouring this disorder to myself (apart from GPs, Consultants). to anyone else who has swallowing problems you know only too well how disabling it can be and how it affects your quality of life. i have turned my back on all my family and friends hiding behind totally fabricated reasons to disown them and blame them for things that arent really there when really the problem is me.
i have emailed my speech and language theparist again to see if she can refer me for a barium tablet test as part of my evaluation. i recently started taking fish oil tablets to help keep my joints supple and almost everytime i take one i can feel it stick in my throat. this has to be a physical impairment somewhere. the test does exist but the last time i saw my consultant she wasnt aware of such a test apart from a liquid barium swallow which is not the same thing. if my hospital doesnt do it surely i can be referred to another ?
life is just sh*t right now.
i would like nothing better than to win a huge sum of money so that i didnt have to work (and thus mingle with people) again. to hide my dysphagia i would gladly buy a small cottage in the middle of knowhere so i could eat in private.

[stuart39]

after 30 years of utter secrecy about having dysphagia i told my best friend (well my only friend after blowing all the others out!) and his wife last weekend. i told them about the new job and when i was going in they wanted to know why and if i was okay. my mate said you should ring up my new boss, apologise for all the excuses and explain what is truly the problem in a bid to get my job back. thats a bridge too far right. there will be other jobs.
i couldnt hide it any longer and once we got talking i did feel like a weight had been lifted. id recommend it if youre in the same boat. its hard but as long as you really know and trust the persons concerned youll be okay. in fact they were quite interested and we bounced all the different aspects around. they said that knowing i have this condition it does explain some aspects of my behavious in the past.
anyway back to the condition. a letter came through from the speech and language therapist fully discharging me and suggesting another review by the Upper GI team.
my GP has agreed to this and i am now waiting for them to send me an appointment.

once i get to see them i will be asking for a barium tablet test. im not even certain that the NHS conducts tests with barium tablets as yet. swallowing one of these should identify any subtle stricture in the esophagus at the point of any hold up that the standard barium test may not pick up on and afterall its solid food dysphagia i have not liquids so this is what i would expect with a really subtle stricture.
ive been after one of these tests for years but only now am i pushing for it.
ive had the modified barium swallows/meals using that awful thick concrete like barium gunk but nothing solid like a pill. with my cod liver oil pills i can feel them stick in the throat and the sensation lasts for around 10 seconds before slowly easing. my aim is to replicate this with a barium coated pill. the xray will highlight the hold up point. i see no reason why it shouldnt and ill be frank, we'd better have this in the UK because i really dont feel that standard bariums are the be all and end all of finding this kind of problem. will update once ive seen the consultant. i reckon if the test was widely used in the NHS then it would help identify patients problems where the normal test failed to spot anything.

tbh i'll even consider going private and/or abroad to a country that does conduct the test depending on costs if i draw a blank in the NHS.

[Anxious_gal]

have you had a scan done to see if maybe it's your thyroid?