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Can any one help with advise?

Posted , 6 users are following.

barbara35845
barbara35845

This Achalasia is a curse on my life .I am waiting to see a surgeon to discuss having the operation... been waiting quite a long time i might add.My consultant referred me after my last check up, 18 months earlier i had a dilation it helped a little but didn't last.I have type2 i am told this is the better type of the 3.Most days i can manage though i do get bad spasams in and among which drain me then it eases off after about 24 hours.At present i am suffering with food sticking in my throat which is causing me to cough as i feel its going into the air ways.Does any one out there have these same symptons and is it a sign of getting worse?. I can't seem to get the food out of my throat, this has gone on for quite a number of days now.I would appreciate other Achalasia sufferers getting back if they have any self help advice.

0 likes, 16 replies

16 Replies

  • richard70210
    richard70210 barbara35845

    Posted

    Barb,

    When my symptoms first started I was just making sure I drank water with everything.   Not knowing at the time that this regimine was to become life long.  I waited 4 years to have the surgery thinking I could get along.  By the time I had the surgery my esophagus was so large that I had other complications from food remaining in it as it would not go into the stomach without pushing.  I should have had the dilation or surgery earlier.  I can recommend that you eat small bites, chew like crazy and drink liquid with every bite and swallow.  Eat slowly. Eat often in little amounts giving your stomach a chance to digest and pass the food down....You may have some issues with aspiration /food liquit in the lungs....It passes if not severe and taught me to be careful and follow the suggestions about eating prior to sleep etc.  Total life change but Im just as active and happy.  Still go to dinner with friends, but eat before I go. Going on 8 years now and doing fine.  Took a long time to beat me into submission that this was NOT GOING AWAY.  So I had to deal with it.  

  • didragon
    didragon barbara35845

    Posted

    Hi barb

    I had this for 5 years , slowly getting worse until in the end could only get liquid down whilst stood up making hula movements with hips to get it through the very narrow opening left in les. Had the myotomy 6 weeks ago and has changed my life . Had stood up to eat and sat up to sleep for 4 years and thought that was my life! Best advice is try standing to eat , sit up to sleep , go to liquid meal replacement if solids too difficult but just whilst planning the operation . Fmd a good surgeon with experience . Don't know where you are but worth traveling to get top surgeon. I went from Gloucester to Nottingham . Ian Beckingham is brilliant , you can get refered to him on nhs , just get your manometry results sent to him . Also if you are on facebook join achalasia group as lots of support and advice available in private group there. They have helped me a lot , good luck 🍀

    • Cathuk
      Cathuk didragon

      Posted

      Hey fellow Ian recommender!!! Lovely man isn't he!!!! We tell everyone about him - did you see the research he's done collating all the data to look who is doing HM's - some surgeons are doing the odd 1 or 2 - madness!!
  • Cathuk
    Cathuk barbara35845

    Posted

    Hello Barbara, my wife has A and hers was pregressive over a few years but we didn't notice as we slowly changed our diet to allow for sloppier foods with out questioning why she couldn't eat them. Then in July 2012 she stopped being able to eat or drink anything.

    A trip to A&E and they didn't know what it was either, endoscopy revealed nothing stuck but the lady said it could be Achalasia. Upon googling it fitted the symptoms. She had a barium swallow and it revealed the birds beak which is typical in A. She had a dilation two weeks later - yes two whole weeks with nothing going in. The local hospital was rubbish!!!! Her hair was coming out and her urine was brown then stopped. Only now looking back I am annoyed we didn't press for her to be admitted but we thought we where going mad.

    Anyway after the dilation she could eat some foods and this lasted from August till December. However in the meantime we have found Ian Beckingham based at the Queens medical centre Nottingham - many hours from us but he has done the largest series of HM's in he UK. I can't stress enough how important it is to go to the right man for A. And he IS the right man. Google him. Under the NHS guidelines you can request treatment anywhere in the UK - ask you GP to send you to him - his clinic is a Monday morning in he Circle Centre.

    My wife has the HM with toupet flundo Feb 2013 and hasn't looked back since. She even got pregnant July 2013 with our son and there is no way this could have happened with out Ian's fantastic work. It is important to get treatment early to prevent stretching of the esophagus. This cannot be repaired and can end up as mega esophagus. Please push for referral - Ian can type you ( 1,2 or 3) using a high res manometry (nothing like local hospitals do!!)

    Then plan for surgery - you shouldn't wait long at all.

    • barbara35845
      barbara35845 Cathuk

      Posted

      Hello there ..i went to the doctors yesterday to enquire why my appointment has never arrived to see the surgeon my consultant had reffered me to last June!.She believes i have been lost in the system.I am sure she is right.So is chasing it up, i did mention about  Ian Beckinham as quite a few has mentioned him on this site . She said i should discuss this with Mr James the surgeon i will be seeing.I have to say i am concerned about a future operation as no turning back once done. It is a worry about not being able to be sick if ever it was to happen...how can you stop this ?.I am frightened of getting rid of one problem and creating another.After the operation are there regular follow ups if so how often .Thanks for yours and every one elses help.Has any one got regrets after having the operation and wishes they had left well alone?.

       

    • Cathuk
      Cathuk barbara35845

      Posted

      The thing with A is its progressive so it's important to get the op to prevent your esophagus stretching. And yes it's important to chose someone who knows what they are doing not a have a go hero who's only done a handful of the operations.

      Whilst you can't be sick you can take a tablet which you put on your gum to stop nausea. And for the times you get sick in your life it's not something to worry about tbh. The HM is the only true fix for A. Dilations work for some

      for a while then it closes again - all the time potentially damaging and stretching the esophagus. It's terrible they lost your referal - make sure they speed it up for you. June is

      too long! The operation saved my wife's life she couldn't eat or drink - only tiny bits of Ensure went in before the HM. Was the worse time of my life

    • barbara35845
      barbara35845 Cathuk

      Posted

      Yes i am going to take all advice as i'm coughing ang grating my throat at this moment and do this for hours after every meal time it is making me worry when eating.I am glad your wife is managing in comfort  now.
    • barbara35845
      barbara35845

      Posted

      Does your wife now suffer with acids back lashing since the operation?
    • Cathuk
      Cathuk barbara35845

      Posted

      If we have eaten tea late for example like last night we eat at 8.45 and went to bed at 10. She has some spasms at night and does feel some heart burn. But it's not that often tbh and we are over weight so that doesn't help!
    • Cathuk
      Cathuk barbara35845

      Posted

      What I would say is to speed things up is request your medical records from your local

      Hospital and take them to Ian with you: saves loads of time as he has to request them anyway! The NHS doesn't share information it's mad!!!

      HM was 20th Feb 2013 - then check up 6 weeks later and now we go each year to see him to touch base so to speak. But be aware they forget about the people that live miles away and they forget us! So each year I email

      Ian's secretary and ask for the appointment! She emails back and it's fine then but it's quite disjointed because of the distance. But it's worth it for his expertise in A. I told him when we first met him it was better than winning the lottery finally someone who understands A!!!

    • barbara35845
      barbara35845 Cathuk

      Posted

      Thanks i am otting down all information.What type has your wife got .I had a menometry in 2013 and was diagnosed with type 2.

       

    • Cathuk
      Cathuk barbara35845

      Posted

      She had a high res manometry and was diagnosed as type 2 - this type responds the best to surgery
  • AlanJM
    AlanJM barbara35845

    Posted

    What you describe are typical problems.   There is an Achalasia MeetUp group on Sunday at 2pm in central London if you want to talk to other sufferers and can make it?   If you google it, you should see the details.   There are also some details on the website of the Oesophageal Patients Association under the Oesophagus and Achalasia.   Some people do have a number of dilatations, but it is not unusual for the benefit to be short term.   I think the general advice would be to try for the best long term solution as soon as you can in discussion with the surgeon.
  • Greeka
    Greeka barbara35845

    Posted

    Sorry to hear of your suffering.  It is miserable to say the least.  After 2 dilations in 2013 I had a surgical procedure called a modified heller myotomy. I experienced good results for a year and a half and then about 6 months ago I started having the sensation that food/medications were getting stuck again. Fortunately for me, my yearly followup appointment was near and I was able to tell the surgeon my troubles.  He recommended a new procedure (upgrade from the last) that they've done 30+ times with good success.  Hopefully better than the last.  Will see the GI surgeon beginning of Feb and hopefully can get the surgery scheduled soon (the two of them will operate).

    With no other options, all we can do is our best with the most information that we have in front of us at the time.

    In the meantime,stay away from foods that cause the most trouble, breads, rough or dry foods. large pills. Soft foods and liquids will be easier to swallow.  Eat slowly and drink plenty of liquids in between bites.  Nothing but fluids after dinner.  At least nothing to eat for a couple hours prior to a nap or bed time. If you feel "full" at bedtime, make sure to elevate your head and chest on 2-3 pillows so you don't choke while you sleep.

    Blessings and good luck.

    • Greeka
      Greeka

      Posted

      I forgot to say that I am under treatment of the surgeons and staff of the University of Iowa Hospitals and Clinics
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