Achalasia Member Introductions

Achalasia
#178

Hello all,my name is Mark.Had the heller mont with partial fund and feel great!Surgery was done at Kaiser in Harbor City CA. with Dr Belzberg. He is the man!

Had it done march 2, 2010 so about a year into it, Feel brand new, can eat and drink anything i want. My advice is to get the surgery a.s.a.p. i waited about 3 years after being diagnosed.

Would not have waited so long but was scared after reading so many bad out comes on this site.

You dont hear enough about the successeful ones so im hear to tell you it can be done right!

M drinking beer, almost burping and no reflux.Thank god for modern medicine! m 49 year old male.

#179

I have been diagnosed with Achalasia for 9 years numerous dilations, had hellers myotomy last sept still have bad spasms currently trying different medications to see what will help. I am 47 2 sons 19 & 14 lost my husband 2 years ago so lost a part of me who I could share any decision making with.

#180

Hi everyone,

My name is Tonia and my son James has Achalasia.He is 13 years old and has undergone 2 operations for this disease. Lapro and open heller myotomy.

He is now doing great and is living a normal life as a teenager.
I look forward to being part of this new group.I am a member on 3 other sites and they all have been a blessing through out all this.

Thank you

#181

Hi,

I am Kim. I live in Southern California. I was diagnosed with vigorous achalasia 6 1/2 years ago at the age of 35. I had the Heller’s myotomy w/ partial fundo almost 5 years ago now. I still get food sticking and regurgitation when stressed or eating too fast (I forget sometimes!). I ahve almost constant chest pains which I have gotten used to except when particularly intense.

Would love to hear from with anyone with this condition and particularly those that have the same variation as I.

#182

Hi my name is Meaghan I am from Australia and I am 29 years old. I was diagnosed with Achalasia in 2002. I had a dialation done shortly after, I can now eat without too many issues although still require a drink with meals. I have always had spasms, although I am finding now that they are going for longer (on and off for 3 days) and have decided to have a bit of a refresher course on Achalasia and get some treatment. I can’t find an exact pattern, sometimes its food related, sometimes stress, sometimes I just can’t put a finger on it. Looking forward to reading everyone’s stories and not feeling alone anymore.

1 Like
#183

hi im new here, im 18 and a half, and was diagnosed with achalasia last year, but i have had thi condition since i was 11. From the age of 11 until my diagnosis, i was told various things, i got told i had an eating disorder, bullimia, asthma, a narrow windpipe!! i had a dilation last sept and waiting for my 2nd in a few weeks :slight_smile:

so glad i found a site like this been looking for ages!!

xxx

#184

Kim,

My 16 year old daughter has achalasia, and 3 years ago she had the same surgery as you. She had her first intense pain the day she came home from the hospital. The pains became more frequent this past fall, and pain killers didn’t help. Her GI at Duke U ran some tests and seems to think that they are caused by spasms. A lot of others in the same boat also have these pains and are told the same thing. After seeing a lone study about a patient who tried acupuncture, I decided to take my daughter to a reputable acupuncturist where we live. At this point she goes every other week and hopes to scale back. She does not have the pains when she goes to acupuncture regularly.

Acupuncture is known for being a pain inhibitor and for reducing the symptoms of many gastro-intenstinal diseases. I can not encourage you enough to at least try it a few times. It’s painless and my daughter loves to go. She says it’s incredibly relaxing.

Please keep in touch and let me know what happens.

Jackie

#185

Hi! I am 38 years old and recently diagnosed with Achalasia, and am going to have botox in 2 weeks. Glad to see a group of people who know what this is like!

#186

George, 53 yo I have “A” since 1990. Had a Heller done in 92. Feeling ok for the exception of a few spasms each month. Some of the spasms (if I dont catch them in time)last for up to two days. Had to quit my job as a corrections officer in 2004 due to the spasms. My Doctor Dr. Plumer out of Middltown NY gave me no support. Basically he couldnt help me and my spasms, and was reluctant to provide me with medical certification for my employer to justify any of my absences from work. Some Doctors just dont give a crap about their patience.

#187

I am so glad to find this website. My mother has been suffering without knowledge of what was wrong with her for years. She was diagnosed in 2009 and not given any info on how to handle her condition. She is 80 years old and has excepted this as her way of life. I now have a better handle on how to help her. She has had 2 botex treatments but does not want the surgery or balloon treatment. Thanks y’all for all the sharing.

#188

My name is Pat, I was diagnosed with Achalsia in August, 2011 after ten months. Had the nomal tests but, why did it take so long? I actually tried to sue my GI doctor! Ten long months, lost thirty something pounds, and many panick attacks including four emergency room visits (these visits never helped me, but, each time I literally thought I would suffocate to death) Had the nissen fundaplication in September, 2011 and did a lot better until I lost my job in August, 2012 and now the acid reflux is back even at night.

#189

Hi, My name is Richie L and have Achalasia for the past 15 years!

#190

10 Month update (Jan 2013):
Excellent progress since Myotomy - can eat 99% of meals except for hots and sharps (chips / popcorn too quickly). Highly recommended and worth the surgery.


My name is Joel. I was diagnosed with Achalasia back last fall and just had Heller Myotomy with partial fundo back in March 2012. What I can say so far, is that it is about 95% better eating and enjoying meals from before surgery. Certain foods are still an issue like tough meats, popcorn and sharp chips. What works are non-heavy breads, chicken, marinated steaks; and now have an issue of eating too fast and can create excessive gas / bloating.

What I recommend is finding a Center that specializes in this procedure. In New England, I picked Mass General where they specialize in this; and worth the travel. I have already gained 15 LBS and while the 1st month after surgery ‘is’ painful (like any surgery), it is highly recommended if life when eating & sleeping is painful.


Regards
JS
#191

My husband has Crycopharyngeal achalasia... honestly wish he had the other so we could can be helped by a Hellar Myotomy. His upper esophageal sphincter is hypertonic and he has struggled with it for the last 20 years. It has gotten progressively worse and now he has a gastrostomy feeding tube. He just had botox injecteions to the UES 2 weeks ago which failed.

We've been to speech pathos, GI specialists, ENTs (a local jerk actually had the audacity to tell my husband he had "globus hystericus" and he was imaging his choking.) We finally found a surgical ENT who actually scoped my husband and took pictures that showed an OBVIOUSLY malformed UES... this is when the botox was attempted... and failed.

Are there any physicians on this site who specialize in CP Achalasia? We desperately need an expert. I'm a research nurse with an MSN. I have searched and searched and found very limited data on retrospective trials that indicate that failed botox pts may very well have successful myotomys of teh CP. Need to know if any one has experinced this type of achalasia and what was done.

#192

Hi my name is Linda, I’ve been newly diagnosed… a little scared.

#193

Gretings one and all. I am here to offer support (may be of the silent variety, but I will be supportive) and to learn. I am interested in this condition for a reason that may be a bit ‘peculiar’ or different – in that I am ‘owned’ by a dog whose medical rap sheet reads ‘congenital megaesophagus, diaghragmatic herniation, hiatal herniation, wheat gluten enteropathy’. There are approximately 40 clinical conditions that can accompany megaesophagus. It was once believed that megaesophagus is the canine counterpart (other animals as well) to achalasia. It is known now that there are differences. However, there are some commonalities as well.

Thank you for allowing me to be here. I wish each of you the very best of the best in care and recovery.

Sincerely,

Peg (and E), Houston TX

#194

In response to brookim. Avoid fizzy or very cold drinks when trying to wash your food down. Also avoid eating less that 3-4 hours before going to bed. When going out, having your drinks served warm or without ice will also help.

I was diagnosed with achalasia in 1971 after the birth of my daughter. By the time she was born I had lost about 75 lbs. During my pregnancy I could only eat a small amount at one time before the food would become stuck.

I had my first heller myotomy in 1971. The main symptom for years was severe acid reflux. I dealt with those times by not eating things that always set off an attack. (Peanut butter was one of the worse.) When I did have an attack I could usually stop it with saltine crackers or white bread and milk, if I caught it early enough.

In the late 1990s I began to have trouble swallowing and food would stick, sometimes preventing me from eating or drinking even water. Around 2000 I had another heller myotomy with fundal plycation after stretching had been tried and failed. The condition got better for a couple of years but then returned.

I have found that there are not any doctors in my area who know much about the problem. I was told by a surgeon at Wake Forest University Hospital in Winston Salem, N.C., that the only thing left to treat my condition would be to remove the esophagus, but because of the partial stomach wrap that surgery would not be advisable. The risk of my stomach tearing in the process is very high. He advised me last year that I should try to get my medications in liquid form and possibly go to an all liquid diet.

I have not yet gone to the liquid diet, but I do have to be really careful about what I eat and drink. I’ve found that cold drinks will not wash my food down. Only milk will work, but it doesn’t help with my weight problem.

Most GIs don’t recognize achalasia because I have not lost any weight recently. I’m sure that my extremely large esophagus and the milk prevent me from loosing weight since my esophagus is never empty. I know this does not solve your problem, but with a little change in lifestyle and diet, you can live with the problem.

I am now 64 and have lived a very full life in spite of my achalasia.

#195

This post is for Drew. I any sending prayers your way hoping your surgery is a success. My life has never been better since the H.M and I hope yours goes well also.

#196

Hi, My name is Drew. 41 year old male. I was diagnosed with Achalasia last month after 3 really hard years. This last year has been the worst. I have H.M. scheduled for May 24, 2013.


Really hard living like this… I’m scared but hopefull.
#197

HI, my Mom has “A” and refuses surgery or botox or even going back to the Doc. She was diagnosed back in 1980 with a “bad hiatal hernia”… it has gotten worse over the years. I insisted on her having the tests done to see what was really going on when the choking at night was more and more frequent.

She finally had the barium test last year, and the doctor was “excited”… yes, excited to do more tests since he hadn’t seen this severe of a case before. My mom freaked out and won’t go back. I am her care-giver. She is at the point where she cannot eat meats, fish, or even some veggies. I am worried about her.

I hope by joining this group I will learn more on the disease. I have done research but it always helps to know you’re not alone. I have her on Ensure and smoothies that seem to be going ok. But she has to eat very small amounts at a time.

Any info or suggestions on meals would be greatly appreciated. Hugs.