Oesophageal spasm that causes severe pain...

Robert,

Thank you. I will try that!

HI Robert, you have had Achalasia for 50 years? I would love to hear your story. When you first noticed issues and what were they. What / how it has progressed, and what you do for it. My mom has Achalasia and is not willing to do any medication and it was diagnosed too late to do any of the surgeries. Please forgive me if I am out of line in asking for such personal information, I just don't know what to do to help her and the doctors won't give me any answers except that she needs a feeding tube which she refuses. If you don't want to respond I will understand. I wish you all the best blessings God can give.

AmericanGirl I am curious why it is too late? Have you gotten other opinions? When I was first diagnosed 30 years ago, the hospital didn't want to do Hellers. After very painful dilations, I refused another and demanded another opinion. They sent me to another and these drs were amazing. I have been able to eat almost like a normal person. But other things do happen...spasms, choking, fungal infections. I have almost 0 motility and my esophagus near stomach has gotten very large. Food stays in there sometimes.

Hi Krisin31632, It is a bit complicated because I am dealing with an 82 yr old stubborn and scared but independent woman. I have tried to get her to go to another doctor - I found a group in Ohio which is only a few hours drive for us - but she does not want any surgeries or even a feeding tube. That is what the doctor has said "there's nothing we can do except for a feeding tube". And she believes a feeding tube is keeping the person artificially alive.  The doctor had never seen anything like this, I suggested  achalasia and he said NO that is so rare. I want a second opinion but it's her life, I guess.  I spoke with her at lunch time today and suggested she reconsider the feeding tube and she said no. She said it’s not worth it. I told her if it keeps her alive longer it is worth it to me. She said she's the one that will have to endure the pain and risk. She also has COPD and diabetes. She has lost 24 lbs since August due to not keeping anything down and is slowing down a lot. The doctor told her with her age and illnesses against her and the esphagus grossly enlarged, the surgeries would be risky. I just want to do what I can to understand this horrible disease and make her as comfortable as possible. 

Oh I understand your situation a bit. I also have a stubborn mother...What about pain meds And meds to relax esophagus when it spasms? It's sublingual hyoscyamine. I also have an anti nausea. And antianxiety meds. And cold water or milk does help. I hope she is willing to at least take something for pain. I am sorry you have to watch your Mom go through this.

She is so stubborn she won't even go to her Doctor to get pain medicine. I think she is giving up. Im so frustrated. Im afraid she will get weak from not getting nutrition she needs and I will lose her. The past 2 days she hasn't been able to keep Ensure or chicken broth down. I will keep that relaxing medicine in mind maybe when we go see her doctor for her 3 month checkup for her diabetes I can talk to him about it. Im so thankful for this forum and for YOU !! I feel like finally someone understands! I pray for all the best blessings to shower on you!

Maybe she avoids pain meds because she fears she will miss out on life. they do sedate... Maybe she wants to experience everything, feel everything. I wish I knew how to help you to help her. But I suppose this is her choice. I am a wimp. I get tired of pain and try to find ways to not hurt. Pain meds are scarey for me because I want to be awake and to feel alive! But then there is the pain... And I see why she avoids doctors...most don't understand and don't even try. I am discouraged because those of us with this achalasia in the US get little empathy let alone treatment that may help. You ask for help and NO NO NO to pain meds like you are some creepy addict. Maybe your Mom is just tired of the fight. My dear, I will be here and listen and understand as long as you need me. This forum has been so much help for me too. I have gotten some new things to try (cold milk). I also want to try the Manuka honey drink before bed. my heart aches for you. I love my Mom so much and I don't know how I would handle seeing her hurTing. I remember when I was 20 (26 years ago) my Moms face was the first face I saw after the Hellers. I was in recovery with tubes coming out of my mouth, lungs, arms. I remember struggling to breath because they split my ribs and deflated my lung to get to the esophagus. PAIN. She was there talking to me and crying. I must have looked bad. just be there for your Mom. Listen to her if she needs to complain. I'm sending you both love and good wishes. I hope you have some joy and some comfort in your life.

Thanks for reply sskett!  Sometimes things like that do help.  Cold water, deep breathing, relax relax...stretch the back muscles.  I even have a tennis ball I use by placing it between my back and a wall to massage the muscles.  Lately this has not been helping.  And then I realized I had stopped taking my amytryiptyline- a low dose anti anxiety that helps with chronic pain.  This med, I have found, is one I must take.  

This website does help.  No one understands what we go through.  I try explaining to  my doctor how we have different pains.  The spasms, the ones that feel like a burning knife in the back, are, at times, a 10 on the pain scale.  You are right, it is a trial and error for us.  And then we change as time goes on.  Thank you for your reply.  It does help so much-knowing others who go through the same things and reading what they do to ease pain.