Accepting having Achalasia

Hi Nikki,

I had the myotomy done when I was 33/34. I am now 62 and for most of that time had no problem swallowing at all. Just the occasional problems with reflux but fairly easily dealt with. I am now having swallowing difficulties again. I would say go for it and have the surgery. It was fairly major back then as I had a thoracotomy but I think that may not be necessary now. I had nearly 30 years of normal eating which was fantastic.

Hi Nikki. It's scary but also productive to finally have some answers and some options. The reason some people eventually have to have another surgery is because the muscle is cut, not removed, and scar tissue can make it close back up over time.  The reason to get the surgery, regardless of how you feel about living with the symptoms, is that it tends to progress over time and your esophagus stretches out over time which can eventually lead to something called megaesophagus and then they may have to do a much bigger operation where they actually remove part or all of the esophagus.  Take a little time to figure things out but you should pursue some kind of treatment.  You should also join one or more of the Achalasia Facebook groups.  You will find lots of information there.  There is also a free download of a book entitled Living With Achalasia (or something like that).  Just google that and you'll find access to one of the Facebook groups, led by the author of that book, and the free download.  Good luck!

I know how scary that can be because I'm facing that myself.  With me, I'm not sure how quickly to act upon the surgery vs. taking time to keep getting informed about options.  There are two types of surgery, for example, the Hellers Myotemy and POEM (this is newer and so less available but done endoscopically instead of through the abdominal area.  The danger of waiting too long has to do with the stretching I was talking about.  Did your doctor mention anything to you about the size and shape of your esophagus since you've had symptoms for so long?  I'm sure that if it was a problem, he/she would have mentioned it but it would be good to know what shape your esophagus is in prior to any treatment.  Did you get the timed barium exam? (slightly different from the regular barium swallow) This test can show those kinds of details.

After I had Heller's done 30 years ago it was great - I could swallow easily again. Over the years it has got slowly worse again and I assumed that was due to the oesophagus healing and going into spasm again. But when they X-rayed me about 15 years ago they said this wasn't the case - it was just that the sphincter wasn't letting the food in to stomach.

Nikki

i had the surgery last May and would recommend it highly. I lived for 6/7 years with this condition (deteriorating over time) and finally had had enough at age 57!. The surgery was uneventful and the recovery with about 4/6 weeks of liquid/semi solid diets is fine. Make sure your surgeon is experienced (does at least two such surgeries a month!) as this is a relatively rare condition. Good luck and I am happy to answer more specific questions. Eating normally is a blessing.....

Hi Nikki,

my experience with Achalasia was very quick compared to others in this group. I first starting having problems about 1.5 years ago. The condition gradually got worse up until earlier this year when it reached a peak and I could not really eat or drink anything. This culminated in an unexpected hospital stay in April where a lot of the planned tests were accelerated and I was formally diagnosed with Acalasia. (There were many attempts to diagnose prior to this and lots of different medications tried!)

I was then told of the options for treatment, balloon, Botox, surgery etc. My Consulstant recommended surgery due to my relatively young age (42).

A month or so passed during which, armed with a proper diagnosis, I learned a number of techniques for eating/drinking, and actually managed to function relateively normally and the weight loss reduced and my weight became relatively constant.

I then got a phone call on the Tuesday to invite me to see the Consultant Surgeon the next day to discuss the surgery in more detail. 

I wanted the surgery but was nervous as having read about a number of people who unsucessfully had it done. I asked about not going for the surgery at all, and my consultant put it like this. You can stay with the 'Status Quo' if you like, but I'll be seeing you at some point in the future anyway... In his view surgery was the most suitable treatment and is considered the permanent solution. 

He also recommended partial fundoplication. He said the chances of getting severe Acid Relux without surgery is about 50%, therefore with those odds its better to have it done just in case.

It was a very good discussion which lasted nearly an hour during which all sorts of aspects of the condition were discussed and options considered.

Ultmately I wanted to take control of my situation and not simply live with it. Therefore I elected to have the srugery done. I was admitted to the hospital on the Thursday, operation done on the Friday, and home on the Saturday. Two weeks recovery, then back to work.

Here I am 5 weeks later after the operation with the surgery scars starting to fade and I am delighted with the results. My surgeon has done an amazing job and I am building up my confidence in choosing different things from a menu. 

One of the most unusual aspects of Achalasia was hearing loss! I have my own theories on this, but since the operation, my hearing returned to normal within a few days. Not sure how common this bit is, but everyone's Achalasia story seems to be different!

Anyway I wish you all the best, and all I can say is that the Heller's Myotomoy (with partial funoplication) worked extremely well for me. As for its longevity, well that's a different question, but I'm happy, enjoying life, and looking forward to some fancy restaurants during our summer holidays!

 

Nikki, no I haven't really sought help. I may one day but the swallowing usually becomes difficult if I eat too much and so it makes me eat sensibly. However, when it's at its worst I can't even get liquids down so it could be dangerous. If it continues to worsen then I'll have to get something done.

Life before the operation was just impossible and I've had 31 years of reasonably normal life since, so I would suggest you go for it.

Hi nikki 108...

You sound a lot like my predicament..I was lined up for another round of tests and all of a sudden had amazing results with medications.

I am still continuing with the tests and plans for Heller surgery as a back up plan for now.

Today was my first day of being 100% fully healed from medications.

Next trick is I am stopping all pain meds today..and will wait one week to stop my Nifedipine angina pain med that is what allows me to eat and drink for now.

My esophageus is starting to heal today and hoping it will open up next like the sphincter has.

But I am also a bad boy and used everything I could to dope my sphincter up to escape my achalasia attack that nearly killed me.

I am like you and have always lived with it my entire life..but extreme stress cause me to have attacks..and this was the biggest one that made me check in and get diagnosed...

Do NOT be fooled that my case is modest..mine was really bad and I would have died if I had not checked in.

I have continued what the nurses taught me in the hospital of using drugs and food to heal it..

I have a couple sayings of my own..

"Achalasia is a drug war..Not a scalpel war."

"Achalasia patients have the best drugs!!"

And...because I now get as high as morphein from eating food and drinking liquids.

"Drugs are my Food....Food is my Drug."

If I quit all med and sphincter stays open..I will cancel surgery.

Wish me luck..oh in 3 weeks the doctors do more tests and I will have documented proff of my curing myself with meds.