Achalasia
Posted , 7 users are following.
Hi. I am a 46 yr old. I had a helleirs myotomy and funden nisopllication when i was 12 yrs old. Ever since the op i have had trouble getting most food to pass into my stomach without the aid of a drink. Things started to get worse in the last few years so i went to my G.P. He referred me to a specialist who gave me botox injections but this didn't help. Last year i went back and had a small ballooon dalitation (there are 3 sizes) which also didn't work. I went back again and had a medium balloon dalitation and that didn't work either. My consultant said the only treatment left is the large balloon dalitation but strongly advised against me having that as it has high risk of death or long term stay in intensive care (he told me the last time he did this procedure the patient ended up in intensive care for 3 months and almost died). He referred me for a second opinion but that consultant couldn't offer any other options either just told me to go back if i suffer significant weight loss. My original consultant has arranged for me to have an edoscopy once every 2yrs for the rest of my life to check for cancer.
My consultant was honest to inform me that my future didn't look very hopeful and i wondered if anyone else knew of someone who had had the same procedures of me that then later died and how long they lived for. I know it's diffferent for some people than others but i am just curious.
Ever since the op i had my lungs get sore if i run very short distances and feel cold but none of the doctors have an explanation for this.
Does anyone know about these symptoms and why i have them?
Thanks.
1 like, 26 replies
DJ-RN k84461
Posted
k84461,
I hate to hear you're having so much trouble with your Alchalasia. I think the Dr. who recommended you not have another pneumatic dilatation was probably one of the best calls he could have made. And I doubt seriously even if you did come through it ok, it probably wouldn't have helped you anyway. I have stage 3 Alchalasia and I am not a candidate for dilatations. Makes me wonder which you have. It sounds like it may be stage two. The risks greatly outweighed any benefits for you undergoing another dilatation. Perforation is of great concern in your case especially since that tissue has been stretched so much. I'm glad you chose to see him and not someone else who might have been dilatation happy to give you another. When I had my manometry the technician told me that she had just finished doing a 5th manometry on a man who had already had THREE partial myotomies and Dor and Nissen Fundoplication. He had suffered with it most his life and it took another surgery to straighten him out. And I feel quiet certain they will come up with something that helps you. Perhaps another plication overstitch procedure or something. I know you must be very afraid, uncertain and stressed out with all your dealing with, but there is someone out there who can and will help you. I asked my GI Doc if he was me, what step would he take next. He told me he would fly to either Northwestern in Chicago, Jonhns Hopkins in Baltimore or better yet the Cleveland Clinic. These are three places who are advanced in treating all types of Alchalasia. I have the top Dr's names at each of them. If you would like to research them, shoot me a private message and I'll be happy to forward the names of them to you. Are you in the US you say?
Regards,
DJRN
PS: plan on hanging around awhile...you're not going anywhere. 😊
DJ-RN
Posted
Northwestern – Nat Soper, Eric Hungness
Cleveland Clinic – Jeff Ponsky
Case Western – Jeffrey Marks
Ohio State University – Kyle Perry
k84461 DJ-RN
Posted
k84461 DJ-RN
Posted
Thank you so much for your reply.
k84461
Posted
I forgot to mention that i was also recently diagnosed with hypoperistalsis and presbyoesophagus. My consultant said i had a stomach of a 90 year old!
I had asked my old g.p a few years back if i could get any further problems with achalasia and he told me that once a person has an op he has no further trouble (which if course wasn't true), and this lead me to leaving it a longer time to mention i was having problems.
My consultant tried me on Nifedipine 5mg caps, one every eight hours when required but they didn't help.
He also had an extensive chat with a surgeon who refused to operate on me as he said the risk of perforation and death were too great. I would have a huge ugly scar across my chest as well.
k84461
Posted
My consultant also told me to look up Rome 4 classification and Oesophagus Dysmotility but the internet is so big i didn't know where the best place was to look or start.
Does anyone know anything about these things?
dolphinz930 k84461
Posted
I am so sorry to hear of your complications. I have told that the balloon dilation can only be done a few times and each time will become less effective, and that the chances of a rupture is possible. I am going on Wednesday to the surgeons to discuss my options so I will be more that happy to ask him more about what you were told. I have been told many many different things of DO and DON'TS that it is hard to know which way is up!. But that being said I do know that from my reading and doctors that after any procedure swallowing will never be like it used to be and that you must not eat large portions and I will have to get used to drinking WITH each bite instead of at the end of the meal. Will get back to you soon
Beth
donna15310 dolphinz930
Posted
Eat small amounts, slowly, and 'graze' during the day to get the calories and nutrition into you.
k84461 donna15310
Posted
k84461 dolphinz930
Posted
Beth is correct. You can only have three balloon dilatations and they are three different sizes. My dr wouldn't give me the third and biggest as perforation was too risky.
He has done all he can but will keep seeing me for check ups. My next is at the end of this month and it will be my first in about 2 years.