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Needing Names of Achalasia Surgeons

Posted , 3 users are following.

emusedone
emusedone

I have Achalasia and it’s gotten so much worse this year. I’ve been waiting for the POEM surgery but my GI Specialists who diagnosed the Achalasia after EGD’s, EUS’s, barium swallow tests, esophageal manometry, sent me to a surgeon who was to do the surgery. He was new to this clinic and they are all top docs I’m told. So I was so glad to get the diagnosis finally (I lost weight from 110 lbs. to 88 lbs. ) and just so sick. But when my husband and I met with the surgeon he wanted another endoscopy and other tests to see if I had GERD and acid reflux. I tried to tell him I have no burning or heartburn and that my symptoms were not being able to swallow, horrible pain where esophagus meets stomach, vomiting, weight loss.  I’m open to any diagnosis but since I’ve been suffering so much from this swallowing, pain, vomiting problem I wanted to proceed with what the specialists found (Achalasia) and with their recommendation (POEM).  But this surgeon didn’t agree with their diagnosis and wanted me to have repeated endoscopies along with the esophageal manometry. And so I began this journey with this surgeon doing a balloon dilation which didn’t help (I didn’t know he’d done it, I was told later by nurse on phone that they’d done a balloon dilation during the EDG or EGD whichever it is) and nothing more. Because I finally said WHOA! Stop, wait a minute here. My insurance and I have paid a lot of money and I’m not getting the surgery I need. I think I need to revisit the original GI Specialist who correctly diagnosed me with Achalasia and was to set me up with POEM surgery. 

But here I am, almost a year after diagnosis and still no POEM surgery and no appointment (I must pay remainder of my portion before I may have an appointment scheduled according to the clinic. I showed up at a long awaited appointment but was $40 short on the payment and they turned me away! They’ve been paid thousands this year by my insurance and payments I make try to pay off the out of pocket)  I’m so sick but I seem to have been matched up with a surgeon who felt I had GERD and not a swallowing problem. I honestly think they’ve got me mixed up with someone else. I’ve since had repeated endoscopies by the surgeon this time and I think (I say think because he never spoke to my husband or I after the EDG or told me what he found) my case has fallen through the cracks. I have an appointment for ANOTHER consultation with the original GI Specialist but I should be having the surgery! Not more chats! So I’ve lost my trust in this group from the business end of things. They handed me off to a surgeon when I was discharged from hospital and never checked back. So I’m looking for other Specialists in this and surgeons. I have all the test results and proof of how bad it’s gotten. I just need help in finding other clinics and doctors who deal with Achalasia. I’m desperately looking so if anyone could help with some names and clinics it would be wonderful. I’m sure this post sounds disjointed but I’m literally exhausted from dealing with the Achalasia and the doctors office. Thank you! Susie

0 likes, 6 replies

6 Replies

  • AlanJM
    AlanJM emusedone

    Posted

    Having a dilatation during the endoscopy probably would not do any harm, and whilst they had the endoscope down there I can see the logic, as it might well have improved things.   Did it not help at all, even temporarily?

    ​POEM may not be the precise solution to your problem, and any surgery needs to be based on a good and thorough diagnosis of exactly where the problems are occurring.

    ​Where is your home?

     

    • emusedone
      emusedone AlanJM

      Posted

      Hi and thank you. I initially was diagnosed with achalasia after an endoscopy called an EUS. The GI Specialist was looking at my dilated pancreas and bile ducts when he found that my esophagus was closing off. I had severe pain, weight loss and trouble swallowing. After that they did an EGD and Barium Swallow tests which both confirmed the problem. Then 3 months later I became sick again and more weight loss. Ended up having another EGD by an Achalasia Specialist. Again, yes you have Achalasia and we’re going to get you referred to surgeon. Surgeon ordered the usual Esophageal Manometry, plus another EGD because he wanted to see for himself. He was wanting to get another barium swallowing test but I had had it with repeated endoscopies and testing and no surgery. I’ve had 3 EGD’s, 2 EUS’s, esophageal manometry, barium swallow, MRCP,  all but MRCP conclusively showing Achalasia. The balloon dilation did not help at all. This has progressed quickly. I trust the specialist’s diagnosis and was so glad finally getting the diagnosis. But things all stopped when the surgeon was brought in. He wanted to re-do the EGD and I did so as told. But he wanted to do balloon (he didn’t agree with  his colleagues’ Achalasia diagnosis, he felt I had GERD based on my consultation visit ) but after manometry and EGD he saw the problem thus he did the balloon. I never heard back from him. I was told that Botox was his next choice of treatment. No, I’ve waited a year now since I was told I needed the POEM. So I’m not going to keep going back to a surgeon who’s specialty is GERD. I’m going back to original GI Specialist who first diagnosed achalasia so he can see I never received the surgery and ask him his opinion. He explained why I needed a POEM and how it will help. I guess I just hit a road block and got stuck with a surgeon who wanted to try other treatments out, however I’m malnutrition now, I have lupus which makes things harder. I’m wanting to see about other Achalasia surgeons in the US and I have all my records and results. Hopefully I’ll find one soon. 
    • AlanJM
      AlanJM emusedone

      Posted

      Try USC (University of Southern California?) Tom de Meester's old department;  UCSF Pelligrini , Marco Patti, Jeff Peter in Rochester;   I have also heard of Joseph Houda in Dayton Ohio.

    • emusedone
      emusedone AlanJM

      Posted

      Thank you, I will. DeMeester's son was going to do the surgery at one point but it didn’t work out. I’m located in Oregon. I’ll check with. UCSF  first. I appreciate the information. 

  • cathy35794
    cathy35794 emusedone

    Posted

    I started to read and had to move on to scanning cause I lived that with my Mother. Your story could have been hers . She was maintained on  something called Donnatal a kelly green liquid for a long time . Finally she was referred for surgery in to Boston's  MA General and that is as specific as I can get. They are the "know it alls " in New England. In short she was "butchered" and when she wasn't a success the doctor called me at school ( the surgeon was going to present her case, but the morning of the presentation she started vomiting and they drugged her and sent her back to her room) and told me to find her a doctor! That was in 1977 and even today they don't know much trust me she died in 2004. She did get some relief at University G.I. Surgeons at Rhode Island Hospital in Providence , R.I. The surgeon I am sure is well retired by now, but he managed her by first cleaning up the mess MA General had made and then every few years he dilated her and prescribed medication to help relax her can't recall at the moment what it was. It was a night mare for both of us, but the doctor was wonderfully understanding. Doctors don't like to admit they really don't know much about this disorder, but testing is sure profitable and takes the burden of being wrong off their shoulders. God Bless you and I will pray for you.

    • emusedone
      emusedone cathy35794

      Posted

      THANK YOU! I’m so sorry to hear about your mother and I understand, oh how I do. What you said about doctors is true wit is what I’m experiencing. I’ve just gotten the energy back to fight for this from reading your comment. No one should suffer like that and their loved ones, as mine are doing, trying to help. Thank you. I’m proceeding on to find help. 
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