What Should I do? nothing has worked

Achalasia
#1

I’m currently 32 years old. I was orginally diagnosed with the disease about 16 years ago. It progressed pretty rapidly for me. In the last 16 years, I have had 3 0r 4 Baloons and 2 Hellers. One in Boston and the second in Mt. Sinai in Ny when I was 21 about 10 years ago. Nothing worked for me. I went through both recovery’s and didn’t have any benefit. Except, I no longer got regurgitation.

At that point, I just decided to give up and live with the disease. Fast forward till now and I think my condition has gotten worse. I now need two bottles of water with meals and over the last couple years, I have been getting painful spasms.

I have to drink alot of water to get rid of them. My last Dr. visit was to a Dr. Cohen in Boston and he told me that I should look at having my Esophogaus removed. I was 27 at the time and felt it wasn’t a bad Idea. Over the last 16 years, I have been able to maintain my weight and am in good shape.

I take Nexium for Reflux. My wife and I have just had a son and I have promised to look for new treatment. But it seems that all the treatment options are pretty much the same.

Does anyone have any advice for me?

Thanks in advance for the help.

#2

There is a young guy named Alex who’s had a similar situation to yours. He’s had an 'ectomy, and is doing very well now. He lives in SF, where 5 of us have had a few in person meet-ups, and we’ve seen him recover and be in good health. The A still has to be managed somewhat.

He’ll probably respond on the Achalasia chat. If not, get back to me, and I’ll send him a note. He’d be a good resource for you.

Good luck-

Kathy

#3

Hi Duce,
I am really sorry to hear about what you have been through. I havn’t done any treatment options myself but I’ve done a lot of research on the disease. For the painful spasms, have you tried medications? I also have painful spasms and lots of water and jello do the trick. You stated dilations and 2 heller surgeries did not work for you. Have you tried Botox? I know its a bit controversial but if other options have failed maybe you should give it a try. Also, you may want to see a doctor that is a specialist in Achalasia. Dr. Rice in Cleveland, Ohio is a world renowned surgeon and has a great deal of experience with regards to this disease. You may want to consult with him. Removing the “E” is very drastic and I wouldn’t go that route unless everything else has failed. I know what you’re going through… just hang in there and make sure you get 2nd and 3rd opinions before taking the plunge and removing the “E”. Please keep in touch.

#4

This kinda scares me when you say that your A has progressed rapidly over the past 16 years. I’m only 20 and was officially diagnosed in January. In January my LES was 36% closed off, but only a month later after the dilitation and right before the botox it was 51% closed off. So if your progressed rapidly over 16 years, it scares me that mine did that much in a month. Now after my latest check up about a month ago it was 73% closed off and my E was stretching. So on Monday I am going in to have a Myotomy done. I get the painful spasms almost everyday, I haven’t gone 2 days in a row without one for about a month and a half now. I’ve tried the medications and none of them work, I’ve had the spasms bad enough that my doctor told me to go to the ER and they hooked me up to an IV with Verapamil to stop them. So I hope my Myotomy is succesful and if it isn’t I hope that someone out there knows of something else that may work.

#5

I wish you all the best with your surgery! Please keep us posted on your recovery. I have my consult for surgery in June so we’ll see what happens!