Hi!
I am about to turn 40 and have just been diagnosed with achalasia. My symptoms probably started about a year ago and have progressed fairly rapidly to having a lot of trouble swallowing even water. I have lost 60 pounds and like most of you seem to suffer from a lot of the same symptoms. I am meeting with a surgeon tomorrow to discuss laparoscopic Hiller myotomy. Boy have I done a lot of reading!! But nowhere have I been able to find the answer to this question. Does anybody out there have waxing and waning symptoms? I just had a 9 day run of not being able to eat or drink at all requiring IV’s twice, and then the last 3 days I have eaten some soup and even a toasted cheese sandwich. Anybody know why/how symptoms can increase and decrease like that? Thanks very much in advance. I look forward to sharing information with everyone here.
Sorry to hear you are not doing well. The reason you can eat and than cannot eat is it depends on what the "E" muscles are doing when their doing it. This caused me to have trouble swallowing and sometimes my food comes up.
Hi,
I am also from the Boston area and got three opinions and they all said my surgeon at the Brigham was the best of the best and he is. He specializes in this sort of thing his name is Stanley Ashley and my GI doctor is Ben Smith. They both are great and really listen to what you have to say it is like they have what you have they know exactly what you are going through. Are you having a heller myotomy with a wrap?
Tricia
Hi
Thanks for your reply. I am scheduled to have surgery April 25th unless I decide to get a second opinion and rethink my current plan. I just don’t know how to really know what surgeon is the right one!! I am in the Boston area if anyone has any recomendations. thanks again!
Dawn
Hi Tricia!!
Thank you so much for your reply!! I went to see Dr. Birkett at Lahey Clinic and I just didn’t leave there with a confident happy feeling so I started thinking I should get a second opinion. He said he wanted to do a laparoscopic Heller myotomy with MAYBE a Dor fundoplication-“Depending on what he saw when he got in there”. That alone made me nervous- like I am going to wake up and find out after the fact what kind of surgery Iam getting…
What kind of procedure did you have? How long ago? Are you still doing well? Who did you see besides your surgeon at Brigham? I love Brigham and Women’s in general. I had an ACL reconstruction there and also delivered my 3 pound premature son there and they took great care of us. I would feel comfortable there in general. I so appreciate your post and hope you don’t mind me asking you so many questions!!
Dawn
In 1999 I had the surgery you are scheduled to have with a partial wrap and in July 2007 had a redo and my gall bladder removed my wrap was okay and the stricture they found was further down in my “e” than 8 years ago I also had to have a full incision with my second surgery and a longer stay in the hospital but now I am awesome I feel like I am 20 again never knew how sick I was until I started feeling this good after my second surgery.
I also saw a Dr. Wee at BWH and a Dr Lembo @ BI and a Dr.
Cirthclow at BI. My sister works at BI and my cousin is an OR nurse(30years) at BWH these doctors come very highly recommend.
I will be more than happy to help you out in any way I can.
T
Hi Tricia,
All of your information has been so helpful!! I called your doctor today and his secretary called me right back and I am scheduled to see him on Tuesday!! I also got an email from Dr. Rattner at MGH today and I think I will make an appt to see him too. Then I guess I have to figure out how to decide between them!! What was the deciding factor for you between all the surgeons you saw? Dr. Rattner says he does about 20/year and Dr. Ashley says he does about 20 as well. Your description of your doctor being understanding is really important to me and will weigh heavily in my decision making. Of course I want an excellent technician but I also want someone who will listen to me if I am having problems down the road. Thanks for your offers of help- what you are doing for me right now is INVALUABLE!!!
It’s great to hear that you are doing well!! I guess the more I get my head around this, the more I am looking forward to having the surgery even though I am a little scared.
If Dr. Ashley asks, would you want me to let him know that you recommended him?
All my best and again a million thanks for your time!!
Dawn
Dawn,
Dr. Ashley did my first surgery and I only got other opinions for my second surgery because they suggested removing my “E” or trying this other surgery I had in July. All my opinions said the same thing and all the other opinions told me to stay with Dr. Ashley he is the best of the best and my cousin also said that she has been in the OR with him for 30 years and he is the best at what he does.
So certainly tell him and his secretary you have been talking to me. I have known them for about 10 years now and he is not quick to cut if he does not have to. He will also draw diagrams for you that really help out a lot to explain the surgery. My GI doctor is Dr. Smith he is the one who first put me in touch with Dr. Ashley I was diagnosed in a week and with in a month had surgery. They are quite a team I put my entire trust in them and know they are doing everything right for me and they never leave a stone unturned there is no doubt in my mind that I am getting the best care I can possilbe get with this disease.
Tricia Walsh
Thanks again Tricia- I will keep you posted!!
Dawn
Hi dawnbatch,
I don’t know the answer to your question… I am new at this too! However, I am also experiencing the same thing. There are days where I will choke and vomit on literally everything, even water. Other days I am eating mashed potatoes and fish with no problem. It does seem like it gets worse some days and others a little better. I am also on a search for an answer… Hopefully we will keep each other posted 
Just read about your condition and wondering what procedure you have done and how are you doing now.
Hi Dawnbatch,
I’m new to this site too. I have good and bad days, but with eating and drinking and with chest pains. Your disease is probably more developed than mine, though. I don’t think I’ve had a bad streak of more than 3 days yet.
Peace,
Jeff
It might be related to your blood pressure/stress levels. I was placed on a blood pressure medicine which helped my symptoms some. Good Luck with the myotomy.
Laproscopic Heller Myotomy is the way to go. I had mine in 2008 …happy days. Had 5 days off work, ate normally again within 2 weeks …& still are, though always have a glass of water near by if eating meat, bread or rice.Steer clear of carbonated drinks to avoid spasms & burping…and be sure to have a surgeon who is familiar with the condition & procedure. Prof Michael Cox in Penrith, Sydney Australia did mine.
A heller myotomy is the way to go if the Doctor had previous experience with the surgery. I had my done about 5 years or more ago. It did really saved my life. I had lost about 40 pounds in 2 weeks and i was feeling hopeless, until there was a Doctor at VA hospital in Tampa, who had previous experience. I feel almost a 100%. There is always some small problems, but once you adjust your bad habits, it is no problem.
Hello All- I dont get on here very often as I am on yahoo site on a daily basis.I just wanted to share with any of you looking the name of my sons surgeon.His name is Thomas Rice at the Cleveland Clinic in Ohio.He has done over 300 myotomies and is one of the few top surgeons for achalasia.Anyone who is looking for a qualified surgeon must ask these questions.
- How many surgeries for achalasia have you done?
- How many were a success?
- How many were failures?
- Do you have patients to whom I can speak with?
Many DRs will say they are a specialist in Achalasia and they are not! Be very carefull who you choose.If your DR has not done numerous amounts of these surgeries and can prove to you they have, do not choose them as your DR.I learned the hard way with my son at age 12.
I didnt do my research and it landed my son in ICU for 8 days!!!I then found DR Rice who was real specialist!There are only a few real specialist out there for this disease.Please research and make sure you have one of the top!
Just a little fyi for the new members.
Private message me if you’d like to contact me.