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FRUSTRATED FINDING ACHALASIA HELP.

Posted , 4 users are following.

1blindmice
1blindmice

Hi Michelle here.  I love this sight and the advice from everyone.  I live in Florida and there are only 3 specialist here.  They are associated with a university, which is pain.  First University of Florida, insisted on all kinds of paper work and said no thank you, Second University of Miami MIller School of Medicine.  Sure we can make an appt.  a year from now.  Third University South Florida that has a specialized clinic just for swallowing disorders 2 doctors.  Sent all my records was told it would take 7-10 business days to hear back and then appts. where 3 - 4 weeks out.  Here is my problem.  They don't have any idea how to fix this disease.  I've read everthing on here and on the internet about the 2 surgeries and I've had botox and ballooning, the botox p*ssed it off.  Made symptons 100% worse.  Everyone says oh yeah I am better but I still throw up from time to time, have horrible acid reflux, still eat a soft diet and this is AFTER the procedures.  Okay doctors are treating this like if you went to your mechanic and said hey my engine light is on and he cuts the wires to the check engine lite.  Now he didn't find out why the engine light was on, but you don't have to worry cause it won't come on anymore.  I don't want butchering.  I don't want surgery.  I want a more indepth treatment. a) smooth musle relaxants, b) nausea medicine when needed, c) pain medicine for the chest pains from muscle spasms, d) BETTER acid medicine e) better research.  This disease will only progress and YES it effects every aspect of your life.  Am I the only one who feels this way. 

2 likes, 13 replies

13 Replies

  • AlanJM
    AlanJM 1blindmice

    Posted

    You are not the only one who feels very frustrated by having to cope with this disease.

    ?You could make a start with downloading 'A Patient's Guide to Achalasia' from the website of the Oesophageal Patients Association under the oesophagus and then Achalasia (it is towards the bottom of the page).

    Is what you describe as nausea the effect of food fermenting in your oesophagus that has not passed into your stomach?   If so, and it sounds quite possible, the normal anti nausea medication may not work.

    ?The spasms are caused either by the reflux, the obstruction, or something else, and it might be the case that you will always have spasms unless the major underlying cause is rectified.   To that extent surgery would be the in-depth approach;  but you will always have to try and get your system to relax around food because stress will make things worse, even after the most successful surgery.   The longer you leave it, the more likely it is that your oesophagus might become big , baggy and less amenable to eventual surgery.

    UCSF would be a place I would recommend going to on advice of a surgeon over in the UK.

    I hope this helps

    • 1blindmice
      1blindmice AlanJM

      Posted

      I was told that the spasms are caused by acid, but not stomach, from the food fermenting in your esophagus.  Which must be true, because coughing fits at night, I go when did I eat a cracker (haha) but true. Thank you,  And they are trying to make some connection between my MS and the dysphagia and the achalasia.  I personally don't care if there is a correclation, there is no medicine to reverse or fix either.   

      Yes I heard about the stem cell in Canada, 1 out 10 died, no thank you. 

  • robert76159
    robert76159 1blindmice

    Posted

    No, you're not alone, but I don't think you will find a pain med that will help with the chest pain. I'm on maximum dose of Oxycontin 4 times a day and 50 mg of narcotic pain med Nucynta up to 5 times a day for my back pain and when I use to get my chest pains from cramping , well let's just say it almost brought tears to my eyes . I don't cry easily.

    Acid.... I take 40 mg of prilosec at breakfast and lunch and 40 mg of Pepcid at dinner and bedtime. This has managed my acid pretty well, plus I sleep almost sitting up.

    I agree more research needs to be done. Hell, POEM surgery only came about in 2008. Good luck and I hope someone else can give you more answers.

    • 1blindmice
      1blindmice robert76159

      Posted

      Oh I forgot to say sometimes the acid and chest pain gets horrible and I end up in the ER.  They give me a smooth-muscle muscle relaxant.  I just know it starts with a N and it can only be give intraveniously (sp).  They give 2mg of Delaudin (sp) for pain.  Give me Malox with lidocaine in it and of course something for the nausea and something for acid.  It works and till 2 weeks out and I am suffering again.  I do the 80 mg of prilosec sometimes it seems to make it worse and I read it can do that. 
    • ed95295
      ed95295 1blindmice

      Posted

      When I first had issues I thought I was having a heart attack and kept going to the ER ($100 a visit plus tests, other).  They gave me the same thing and called it a GI cocktail.  My doctor felt bad for my pocketbook, told me how to mix it, and also gave me Dicyclomine Hcl 20mg tab for spasms.  The Dicyclomine was a life (and wallet) saver.  Any time I start to feel like my chest will spasm I take 1/2 a tab, which usually works.  If it doesn't work I take the other 1/2.  I also try to avoid stress, which causes most of my chest spasms, stay hydrated and drink something warm.  Good luck. 

    • robert76159
      robert76159 ed95295

      Posted

      Ed. I wish I would have known you 4 months ago. I can't tell you how many times over the last 5 years I thought I was having a heart attack. My local hospital is horrible and to travel into Manhattan takes time and money. I know just how it feels to lay there and wonder if you're going to die. I have seen every head of the gastrointestinal department in almost every hospital in Brooklyn and Manhattan and none offered me anything for the spasms. Thank you for this info. I had POEM in June and so far so good but you never know.

    • ed95295
      ed95295 robert76159

      Posted

      I wish I had posted in here sooner.  Have lived with it for over 3 years but finally gave in to surgery after sipping soup for a month.  Feeling much better but still nervouse about eating anything other than liquid and very soft foods.  Best of luck on your recovery.
  • ed95295
    ed95295 1blindmice

    Posted

    You are not alone. I apposed surgery due to issues with anesthesia and sleep apnea, and was hoping to find an alternative. However, I found a study that indicated no advancements would be made beyond POEM due to lack of cost/benefit (procedure is effective and not too expensive). I also learned that by waiting you just increase the risk of damage to your esophagus and lower quality of life till you have it fixed. Though POEM looks to be the best option some insurance will not cover it. I just had the laproscopic Heller Myotomy with fundoplication (on Monday) and already feel better, have been walking around, and increase my food intake daily.
    • robert76159
      robert76159 ed95295

      Posted

      Hey Ed, I had POEM surgery in June. I was eating all the foods I enjoyed before the surgery 3-4 weeks after. Just follow your doctor's advice to the t. As far as clear liquids and soft foods right after surgery.

      I suffered for 5 years with achalasia and it's no joke. Many times I thought I was having a heart attack. I'm very happy I didn't because I refused to go to my local hospital. Anyway, make darn sure that your insurance covers everything!!! I was only in the hospital for one night. I went home at 2pm the day after my surgery. Are you sitting down? The cost for the hospital and surgeon , drugs .......everything to do with my surgery was a

      Wopping..... $76,779.!!!! So, check with your ins. You would think because it's suck a short stay it would be a lot less, guess not.

      I hope this info has helped. Good luck

    • ed95295
      ed95295 robert76159

      Posted

      Thank you for the advice.  You're right, I tried to eat something before I should and paid for it for 2 days.  I made sure insurance covered it and thankfully my wife has excelent insurance with $2500 max out of pocket.  The only bad thing is we are in the last month of this year so do not have pretax $ and do not benefit from reaching max earlier in the year. 

    • robert76159
      robert76159 ed95295

      Posted

      The money won't matter so much after you are feeling better. Hopefully soon you will be looking back and laughing about the wonderful liquid meals . Best part being the pain and discomfort will only be a memory.

      That's what we all want. A little piece of a normal life. Feel better Ed

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