New member-son 13 has achalasia

Hi-My name is Tonia.My son James age 13 has achalasia.He was a perfectly healthy kid with no health issues of any kind.At age 12 he began having issues that come with achalasia.Trouble swallowing,food sticking,needing to vomit,spasms,etc…

He was diagnosed of acid reflux.I began to research and find out this was not acid reflux.Things progressed very quickly.After requesting a specialist and going through test, James was diagnosed with A.

We went to what we “thought” and was told was the specialist around here.Things had us in such a uproar we never researched much about this Dr, or much about the disease , but knew we wanted our son better so we went for surgery over any other options.I WILL ALWAYS REGRET MY NOT RESEARCHING HIM OR THIS DISEASE MORE-WE JUST WERE OVERWHELMED AND DIDNT!!!

He had a lapro hellor myotomy 3 days in hospital ,and things never got better only worse.I began this time lots of research and found a few other achalasia sites.This is when i was told his operation wasnt a success.We went to and from that surgeon complaining things were not right to be told things were alright and James needed to learn to live with this disease the best he can.NOT!!

We had allowed him to suffer enough and came across a real specialist in Ohio at the Cleveland Clinic.DR Thomas Rice.This is his specialty and several people from other sites had used him for there operations.He is one of the top Drs for Achalasia.We traveled 8  hours to meet him and schedule testing.We went back for testing and things showed up that they were indeed done wrong.Stomach wrapped too toght along with kinking in wrap, incision not long enough and done on wrong side.Basically everything was wrong-no wonder my son was worse.The worst part is the other surgeon who first done his operation even went back in and scoped James and still said things were fine!!

We schedule surgery with the new DR and went for a open hellor myotomy.This was a major operation cause they had to go in and take everything down and then start over.It was 8 1/2 days in ICU and lots of pain and agony for my son.Once again I feel like I could have prevented this by researching more in the beginning but…I didnt.

After almost 16 days of being in Ohio my son was able to come home.At the time of his operation he was 86 pounds-he is now 121.His operations took place less than a year apart.His most recent was just in Oct from Dr Rice in OhIO. I am so glad I finally researched endless hours and days even months before taking him to this other DR.I knew what to ask, knew what terms meant, knew what I needed to this time.I then knew this surgeon had done endless numbers of people from around the world and he was able to fix my son and HE DID.

James is still doing awesome!He eats anything and everything with no problems.Well breads do give him a little more trouble but only requires more water when eating it.He does still have the occasional spasms but he takes nifeidiphine for that when needed and usually knocks them out. Well thats our story.Thanks for letting me share.

I hope to help anyone on this board that may need help with this disease or just to become part of another achalasia family to share things with…I have actually met a few other people from the other boards and a few of them actually have gone to DR Rice and had there surgery with him as well.He is the man to go to if you need surgery! He has more patients he has treated than you could contact! He will give you there names and numbers and tell you to call them too,he wants you to find out from them how they are and how things were done.

Here is my home e mail if anyone ever would like to send a e mail to me directly. Thank you to the founder of this site!!!

Tonia in Virginia