New to this group: Care for Mentally-Challenged with Achalasia

[Guest guest]

Sorry, I'm resending this again as a new topic. Realized I should have done it

this way the first time.

I'm new to this group. I am caregiver for my mentally-challenged sister who is

54.

Beginning in 2006, she began having pain in her chest after she ate, when food

would feel like it was getting stuck. She never got to the extreme condition

often described here of not being able to keep food down or even being able to

drink. She had her esophagus stretched a couple times, botox injections (which

made her condition worse). Due to the pain she experienced after eating, she

wouldn't want to eat and she lost 70 lbs. over the course of a year (she is

actually at an ideal weight now, but can't risk losing more).

She was diagnosed with achalasia in 2008 and 10/08, she had an esophageal

myotomy with fundiplication surgery. Since that time, she has had a severe,

dibilitating pain just below her sternum and sometimes 4 inches below her

sternum (doctors describe it as in the epigastric area). She has suffered with

this pain for almost 4 years.

I have taken her to numerous specialists (I would guess maybe 20) and some out

of state. Some believed it could have been adhesions from the surgery or nerve

damage. It was only within the past 3 months when we saw a new physician in our

winter home in Florida did I get an explanation that the pain is due to a

neurological syndrome which is the cause of her achalasia, irritable bowel

syndrome, and cardiomyopaty (enlarged heart). The doctor said even though she

had the myotomy, this does not resolve her achalasia; she still has it and that

electrical impulses in her neurological system cause erratic spasms and don't

work properly.

We have tried numerous approaches to ease her symptoms including Fentanyl pain

patches, pain meds, nerve block, alternative approaches including massage, Amega

wand, TENS, energy healing treatments, etc. However, she still suffers with

this pain and has a low pain tolerance. She cries a lot when she is in pain.

Since she is mentally-challenged, she isn't able to effectively communicate the

level of pain or description of pain she has. I believe it is sharp, and at

times it has been a pain level 9. When she experiences her pain, she doesn't

want to eat because sometimes she does have pain afterwards, but again, it is in

her sternum area. After a few minutes, it usually gets better after the food

moves down her digestive system. Unfortunately, she is not a good chewer;

although we try to explain and teach her how to do this. Her mentality is about

that of a 4 year old.

Any suggestions, tips, or guidance would be most welcome. I don't understand a

lot of the abbreviations yet, like what is an HM? I'm wondering if when

has her pain, is she really experiencing spasms? I have found that when she is

pain and sleeps a lot, it can go on for 3 or 4 days. However, if I encourage

her to get up and get her out of the house and engaged, it can break the pain

cycle. Because her brain is not normal, I wonder if her brain stays locked on

the pain sensation until it is distracted.

I am persistent and determined to find relief for her. She is a precious, sweet

person. Everyone loves her and she is the joy of our lives. We almost lost her

last fall when she was put under anesthesia for a heart MRI and she had a

cardiac arrest and it also happened when I took her to the University of

Illinois Hospital in Chicago to see specialists and she had a cardiac arrest

when they did an endoscopy. Those were horrible experiences. She deserves a

better quality of life and I won't give up trying to improve her condition.