dysphagia lusoria

[feebee1993]

hello ,

its taken me a while to pluck up the courage to post on here as i dont have oesophageal cancer , but the condition i have been diagnosed with after years of swallowing problems and what i can only assume are oesophageal spasms , means i can really only swallow a liquid diet now . searches for lusoria return no results for help and as this site kept comeing up i thought i would watch it . lusoria is my right subclavian artery that is compressing my oesophagus . i was born with it but i have been told its only when the atreries start to harden that it can really impact on swallowing . so i think i share the blockage part .like a lot of other people on here it has taken me years to get a diagnosis . diagnosed may this year .

I was so relieved when i was told it wasnt cancer i said well soup and ice cream it is then and that was it .i am however strugeling to get enough pureed food down me as i can have a maximum of two desert spoons of puree before i feel full / blocked .it takes two hours to go down , i can hear it gurgle when it does like a blocked plug hole lol .

i finally spoke to a diatitian and he has prescribed liquid nutrition packs as he sais i cant get enough from such small amounts of food . so when i get them i am hoping my energy levels will improve .

this site is very posative and i wanted to say that my dad had throat cancer thirty three years ago and is still here now age ninty ,eating and enjoying food as is my mother who had colon cancer eleven years ago .

well i will now take the plunge and click send in the hope there may be someone else out there with the same condition .

[rayw55]

The condition you have must be very concerning for you and in many ways is similar to those who have inoperable cancer as the most basic need for food is the biggest issue. Trying to get sufficient calories can be difficult and I for example eat chocolate by the bucket load as it melts easily and is high in calories all I can say is hang in there and with the help of a dietitian you should get by. best of luck Ray

[feebee1993 in reply to rayw55]

thanks ray for the reply , it is the best excuse i have ever had to eat loads of ice cream !

[rayw55 in reply to feebee1993]

I have on average about 2kg of chocolate and 2kg of ice cream every week! And I still struggle to maintain 11.5 st. I'm 6 ft and was 15.5 from the age of 14 until I had my op

[Hidden]

Well done for doing the post, and you are most welcome! Not everyone has cancer-related problems, by the way.

Your condition must be rare, but I suspect that you share common issues with others who have swallowing difficulties for other reasons, and it is important not to let the very rarity of it prevent you from finding solutions.

Would food work its way down with gravity? Is it the peristalsis that is not working, ie the muscular action taking food down through your system?

Trying to blend nutrition drinks with, say, ice cream, or fruit smoothies might be an approach worth trying.

I suspect that eating 'little and often' would be important. There might be some hints worth thinking about in the downloadable booklet 'Swallowing when it is difficult' from the OPA website.

I am sure you have had a discussion with the doctors, but I am wondering whether an Upper GI surgeon might consider whether some form of procedure might help you like a dilatation or even a Heller's myotomy?

[feebee1993]

hello allan ,

thank you for your reply , following your advice i have now found and read the download on swallowing , it was very interesting and will be usefull thank you . i am not sure about the gravity or peristalsis which is working . my symptoms when i eat solid food or too thick pureed food is this awfull spasming feeling , and the feeling of being what i can only describe as how i imaging being strangled feels . i feel like i cant breath , but not in the way you feel you cant breath when something gets caught in your throat and you cough to remove it . more like a heavy pressure unable to breath . the blockage doesnt seem to trigger being sick and i have not tried making myself sick , as the spasming if thats a word ..gets me so frightened i have to try really hard not to panic . several casuilty visits over the years before diagnosis percieved as panic attacks. i found that if i drink very hot water and try and relax ...which is the hardest thing ,we usually end up driving around at all hours to take my mind off it . then after about two hours the blockage feels clear .but as you can imagine food has become rather frightening over the past fifteen years .

i was diagnosed finally through ent ,told my only treatment would be open heart surgery . the ent consultant said there was no other treatment available ie stents dilation , an unguarded comment from one health worker was that they were not suprised i couldnt swallow solid food , as i could barely swallow liquids !

i am assuming these spasm feelings are some sort of peristalsis .knowing what is happening takes away some of the fear ,but so many years of , like a lot of other people i suspect , being told its all in your head ,takes a lot of getting over .

just liquid diet days ,dont cause as many spasms ,but my energy levels are very bad .hopefully the diatitians prescription for food suppliments will have reached the doctors this week and i can start on the supliments . if there was something i could take to stop the spasms it would help , and save a lot of petrol !!!