complications from heller myotomy

[irka]

i am a 35 year old female who had a pneumatic dilitation for achalasia 13 years ago with great success.  three months ago i began agan experiencing dysphagia and decided to have a heller myotomy with toupet fundoplication done 2 months ago.  Since the surgery i have had severe pain and burning sensation at the juncture of the esophogus and stomach and major back pain behind the area.  i was put on previcid powder three times a day which only worsened my condition. i have now discontinued the prevacid and do not feel any worse or better. i can barely eat or drink without having severe pain and discomfort all the time. my weight is nearing 100 lbs.  since having the surgery i have had 3 endoscopies, 2 barium swallows and 2 cat scans.  these all showed no signs of perforation, blockage or infection.  the barium swallow did show very minimal peristalsis in the esophogus(much less than before surgery). the surgery seems to have made my achalasia much worse.  the food is just sitting and moving up and down in my esophogus.  there was no evidence of reflux from the stomach but i am having a ph test on monday.  the surgeon does not feel that the wrap is too tight and that if he lets it down i would have severe reflux disease and maybe no help with the esophogus.  my life and my children's lives have been ruined since this surgery.  i will go anywhere and do anything to get relief and be able to eat and gain weight again.  can you please shed some light on my problem for me.  would a balloon dilitaion at this point help in any way? what else can i do.  i am in emotional and physical despair.
thank you, irka

[maryk5]

A related discussion, heller myotomy was started.

[midsummer]

Hello, did any of the tests that you had show up a problem?
I have the sensation of food being "stuck" but it is that it takes a long time to pass thorough the LES.I also have very little peristalsis.
This showed up during barium studies and also motility tests came back grossly abnormal.
Did the Docs not actually give you a specific diagnosis????
I have a dialation pending. My Consultant is not in favour of Botox for this.

[gemaqua]

Hi.  I hope someone can give me some support.  Since the beginning of February I began having the sensation that food was stuck in my throat and excruciating pain in my chest whcih radiates to my back.  It was so bad I went to the Emergency Room.  Since then, I went to a GI.  I've had a barium swallow, manometry, phProbe, botox injection plus numerous medications that have not worked at all. I am currently on Lorazepam 3 x's a day and Paxil 3 x's a day.  This makes me calm, but does nothing for the food stuck in throat feeling or the pain. The botox didn't help either.  I have lost 20 lbs, still afraid to eat and am still in pain.  My chest is sore to the touch in the same spot as the spasms.  My Dr. said that I have a motility disorder and esophageal spasms.  I went to another doctor and he wants to a bougie dilation (scheduled for Sept. 4th).  I went back to the first doctor and he said the bougie dilation doesn't make sense and he wants me to see a rheumatologist because he thinks I might have fibromyalgia.  I don't know what to do anymore.  I haven't cancelled the bougie dilation appointment.  God knows how much weight I will lose before Sept.  4th.  P.S.  Stress and anxiety does make these symptoms even more painful.  Help!!

[midsummer]

Hello, she was having problems swallowing solids as before and her body seemed to go into total shock after the surgery. I mailed her and its been over three weeks and no response. Im getting a bit worried.
She had previously been having Botox with good effect but limited life span.
Can I put a question out to anyone with Achalasia? Do any of you also have a vocal disorder?

[tessa0825]

Dilatations usually arent so bad....I have them about every 4-6 weeks for my strictures and my GI has NEVER hurt me....What is most bothersome is having to miss a full days work every month to have it done, I have used every vacation day, and all holiday pay having my esophagus dilated or biopsies taken...A couple times I have had a bit of a sore throat for maybe just a day but really no big deal.....I do sometimes worry that I will get addicted to versed......Good luck, Tessa

[Kevin Pho, MD]

Hello - thanks for asking your question.

The Heller approach provides relief in 70 to 90 percent of patients.  It is generally superior to pneumatic dilation in both the short and long term.  It is unfortunate that you continue to have symptoms after the procedure.  

A 24-hr pH study to see if there is residual reflux is a reasonable test.  If positive, then more aggressive anti-acid therapy can be considered.  

You obviously have gone through a very comprehensive examinination with several upper endoscopies, barium swallows and CT scans.  You may want to obtain a second opinion to see if a dilation, a revision of the surgery, or botulinum toxin is an option.  

In the meantime, I agree with surgeon's idea for a transient feeding tube to provide appropriate nutrition.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[irka]

the person you email with the balloon dilitation problems are the problems similar to mine.  please elaborate.

[midsummer]

Hello, I have Achalasia and the gastric consultant is wanting to do a dialation. I had a barium meal/swallow two weeks ago and food is just sitting in my oesphagus.
Because of all the other problems I have I was hoping to have Botox to give me a bit more time for other Neuro tests but he will not agree to this.
I would then as my second choice have gone for a Heller to be done with the issue but reading your post has sort of worried me.
I do mail someone else who has just had a Heller with no problems at all so I think you have been unlucky.
If you want to mail me about living with this problem please do so.
***@****

[midsummer]

Forgot to say that someone else I mail has recently had a balloon dialation and is in real trouble. It really is difficult to know what is the best thing to do.

[irka]

thanks for sending your comment.  i have been on aggressive acid reflux therapy since after the surgery.  prevacid suspension three times a day.  i went off the prevacid on tuesday to prepare for the ph test and have had a little relief since the side effects of such a high dose are difficult in themselves. i am on a totally puree and liquid diet since my message from the surgeon and it seems to give me very slight relief and some nutrition but the burning at the site continues.  could i have acid reflux that is irritating everything and just isn't showing the irritaion on exam? Wouldn't the prevacid three times a day have helped with the reflux if i had any?   Could my vagus nerve be caught in a suture?  could this all just miraculously go away after a month or two more of healing?  someone out there has to have had a similar experience.  any comments would be helpful.
thanks, irka

[midsummer]

Thanks for that, there is hope. Why do you have to have them so often???
I had my upper GI stuff/biopsies and sigmoid/biopsies done without meds last year. I am going to have a big shot of something for anything else I have done.

[tessa0825]

Without meds?....I have had sigmoids without meds but not colonoscopies or EGDs or dilations.....My Dr. does say that Im awake and cooperate with them but I dont think so....I have the dilations because of the amount of scar tissue I have, for some reason I keep forming it, my GI goes in and breaks open the scar (dilate)....I try to put off having it done by being very careful with what I eat and sometimes not eating at all, but thats really not a good option....Take care...Tessa

[tessa0825]

Could I ask you a general question about surgeon to patient interaction prior to surgery.....We always read/hear that we should ask all these questions and "get to know" everything about our surgeon and our surgery before we agree to have anything done....Do you guys appreciate that or is it considered a waste of time and asking questions that we, patients, dont have any business knowing?.....Im getting ready to meet a surgeon for what might be a very big procedure and I have lots of questions, I worry that he might be offended, that is NOT my intention, I just want to know as much as possible about my medical procedures and thier experiences with the same procedures....I feel almost like I need to take a "class" or something so that I can get the information that I want to have and do it in a way that noone gets upset....Your thoughts on this will help...Thanks, Tessa

[tessa0825]

Thank you for your input, you have helped put my mind at ease...BTW, gray hair is GOOD on a Surgeon, it says alot.....as long as the hands aren't shaky! (just kidding)

[surgeon]

if the wrap were too tight, it likely would have been found to be so in the various tests you said you have had. Pain due to the wrap in some way pressing on nerves is a very unlikely possibility.

[irka]

i appreciate the advice about the feeding tube.  is there any chance that the wrap is tight and pressing on some nerves and causing the pain.  someone mentioned to me that the wrap would loosen itself over time and maybe let up on the nerves.  could the peristalsis in the esophogus therefore get better and could the dysphagia decrease?

[surgeon]

One thing to consider is to have placement of a feeding tube into the stomach or intestine; malnutrion can't be helping. It might be that with more time, and with adequate nutrition, things will improve without the need for specific intervention. It's not optimal to have to get nutrition thru a tube, but it's quite manageable, can be timed around your other needs (frequently dripped in at night only) and would give you time and energy.

[surgeon]

I can't speak for all surgeons. In my case, I expect patients to ask questions, and try to get to the point where there is as complete understanding between us as possible. With the internet in particular, I find that patients are more and more informed, and have more and more questions (although not all the info they get online is accurate!) and I expect questions and don't mind them. Want them, in fact. And I expect that the bigger the procedure, the more issues there will be. Frankly, it amazes and mystifies me how it works that a person can come to see a surgeon whom they've never bet before and end up with trust in one session. I've supposed that sometimes there's a transferrence of trust from the doc who sent them to see me, whom they know better. And I have enough gray hair to look like I've been around awhile, starting to get the hang of it, which I have. Hopefully, there will be a connection beyond just the facts that will help you.