Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Anita, Have you looked at the group site under Data Base and then Doctor Referral list. That is a place to start for you. I do not know any doctors in that area cause I am over in England right now. I hope this directs you in the right direction. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Could someone recommend a good surgeon in the Philadelphia area. I went to my GI and he wants to do Botox again. The first Botox didn't work that well and I'm getting worse. I'm very confused and don't know what to do. Any help would be appreciated. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Hello, My name is and my daughter Tia (only 9 years old) was diagnosed with achalasia on November 6th. She had surgery (Heller Myotomy) on November 8th. I can relate to your financial worries. If I wasn't laying awake at night crying for her I was crying trying to figure out how we would pay for everything. We do have insurance but our portion was still a huge amount. She ended up being in the hospital for 11 days, so you can imagine the cost. She was at the Seattle Children's Hospital. A social worker met with us and was a guardian angel. We didn't qualify for financial aid, BUT we did get help by the hospitals grants and fund raising program. Whatever our insurance does not pay, the hospital is paying. CAN YOU BELIEVE THAT ????? So, my advice is not give up. Contact a social worker at the hospital that he would have surgery at. If you don't have insurance it may be easier to get help?? Who knows. My new motto is "what do you have to loose "? Check to see if there is any help available. Seeing my daughter before surgery and after surgery is remarkable. Her quality of life is so much better. If I had to do it all over again, I would do it in a second. Even if I didn't get financial help I would still want my daughter to have surgery. Best of luck to you both. Take care, texasdeaton <texasdeaton@...> wrote: My husband has had the following in the last month due to not being able to eat solids, sometimes liquid, Barrium Swallow, Chest Xrays, CT Scan, Enodoscopy with dialiation, which didn't do a darn thing to help at all, and Manometry. Now, we are waiting for the medical comfirmation of the Manometry so that surgery can be done. My question, what are the statistics of this working? We don't have insurance and don't qualify for Medicaid, so, it will be self pay. My husband is very worried about money at this point. We have spent over $1,500 so far just for the tests. The reason that I'm asking is because, I have seen some horror stories of botched myotomy's and having to have more than one and still can't eat right. My husband is wanting to back out of the surgery and just deal with liquid the rest of his life, because he doesn't want to waste the money if it isn't going to help. He's only 43!! He can't live this way forever. He's already dropped 18 lbs, and can't work very well from getting so tired. He has actually gained a couple of pounds from drinking Ensure all the time.Someone please put my mind at ease here. The surgeon that is suppose to do this is highly recommended for this. Seems this is his specialty. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 Hello. Where are you all from? There are many of us on this site that have had the surgery and are doing very well, I am im one of them. I would suggest finding a surgeon that has done this surgery sevear times before and know about this disease. IF you would like to ask any other questions feel free to call me at 478-971-7474 or e-mail me at mt4mar@... in Georgia co-founder www.achalasia.ustexasdeaton <texasdeaton@...> wrote: My husband has had the following in the last month due to not being able to eat solids, sometimes liquid, Barrium Swallow, Chest Xrays, CT Scan, Enodoscopy with dialiation, which didn't do a darn thing to help at all, and Manometry. Now, we are waiting for the medical comfirmation of the Manometry so that surgery can be done. My question, what are the statistics of this working? We don't have insurance and don't qualify for Medicaid, so, it will be self pay. My husband is very worried about money at this point. We have spent over $1,500 so far just for the tests. The reason that I'm asking is because, I have seen some horror stories of botched myotomy's and having to have more than one and still can't eat right. My husband is wanting to back out of the surgery and just deal with liquid the rest of his life, because he doesn't want to waste the money if it isn't going to help. He's only 43!! He can't live this way forever. He's already dropped 18 lbs, and can't work very well from getting so tired. He has actually gained a couple of pounds from drinking Ensure all the time.Someone please put my mind at ease here. The surgeon that is suppose to do this is highly recommended for this. Seems this is his specialty. <FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG src=" "> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 My son just had the open myotomy done Oct 27 at the Cleveland Clinic in Ohio.Dr Rice is one of the best Achalasia surgeons out there.We drove 8 hours and was well worth it.This Dr HAD TO FIXED A MESSED UP MYOTOMY DONE ON MY SON FROM ANOTHER DR WHO DIDNT HAVE THE EXPERIENCE!YOU MUST HAVE A EXPERIENCED DR!!!!!First surgery was 3 days in hospital and never got better-to fix and repair was 8 1/2 in ccu and Icu AND FINALLY is able to eat normal again. My son also lost 18 pounds FROM THE FIRST OPERATION but now is eating anything and everything and gained it all back.WE HAVE BEEN 100 % SATISFIED WITH DR RICE AND EVERYONE HERE THAT HE OPERATED ON TO MY KNOWLEDGE AS WELL AND NO ONE HAS HAD ISSUES AFTERWARDS TO MY KNOWLEDGE EITHER-HES THE MAN! It is a very costly operation but funds and help is available.As far as continuing nothing but liquids-As much as I hate to say this but the day will come when that will be a struggle.Please contact DR Rice he has done many people here operation and they were the one to get me to go to him as well.He is like the top surgeon for this!!!He has been our blessing from God along with this site! If you have any questions please let me know.Here also is my number if you would like to call.Where are you located? 1-540-561-0917 Tonia mom of 13 year old -- In achalasia , " texasdeaton " <texasdeaton@...> wrote: > > My husband has had the following in the last month due to not being > able to eat solids, sometimes liquid, Barrium Swallow, Chest Xrays, CT > Scan, Enodoscopy with dialiation, which didn't do a darn thing to help > at all, and Manometry. Now, we are waiting for the medical > comfirmation of the Manometry so that surgery can be done. My > question, what are the statistics of this working? We don't have > insurance and don't qualify for Medicaid, so, it will be self pay. My > husband is very worried about money at this point. We have spent over > $1,500 so far just for the tests. The reason that I'm asking is > because, I have seen some horror stories of botched myotomy's and > having to have more than one and still can't eat right. My husband is > wanting to back out of the surgery and just deal with liquid the rest > of his life, because he doesn't want to waste the money if it isn't > going to help. He's only 43!! He can't live this way forever. He's > already dropped 18 lbs, and can't work very well from getting so > tired. He has actually gained a couple of pounds from drinking Ensure > all the time. > Someone please put my mind at ease here. The surgeon that is suppose > to do this is highly recommended for this. Seems this is his > specialty. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2007 Report Share Posted January 8, 2007 As Tonia said call Cleveland, they helped me out when I didn’t have Medicaid and couldn’t afford it!!! They have a grant for this kind of thing!! They are also very willing to work with you!!! I had my surgery there in 2002 and I’m still doing quite well!! I have had a couple of dilations done but that’s it, so that surgery and 2 dilations has lasted me over 4 years now!!!!!! C Warren Co-Founder www.achalasia.us From: achalasia [mailto:achalasia ] On Behalf Of toniasdogsandi Sent: Monday, January 08, 2007 4:12 PM achalasia Subject: Re: myotomy My son just had the open myotomy done Oct 27 at the Cleveland Clinic in Ohio.Dr Rice is one of the best Achalasia surgeons out there.We drove 8 hours and was well worth it.This Dr HAD TO FIXED A MESSED UP MYOTOMY DONE ON MY SON FROM ANOTHER DR WHO DIDNT HAVE THE EXPERIENCE!YOU MUST HAVE A EXPERIENCED DR!!!!!First surgery was 3 days in hospital and never got better-to fix and repair was 8 1/2 in ccu and Icu AND FINALLY is able to eat normal again. My son also lost 18 pounds FROM THE FIRST OPERATION but now is eating anything and everything and gained it all back.WE HAVE BEEN 100 % SATISFIED WITH DR RICE AND EVERYONE HERE THAT HE OPERATED ON TO MY KNOWLEDGE AS WELL AND NO ONE HAS HAD ISSUES AFTERWARDS TO MY KNOWLEDGE EITHER-HES THE MAN! It is a very costly operation but funds and help is available.As far as continuing nothing but liquids-As much as I hate to say this but the day will come when that will be a struggle.Please contact DR Rice he has done many people here operation and they were the one to get me to go to him as well.He is like the top surgeon for this!!!He has been our blessing from God along with this site! If you have any questions please let me know.Here also is my number if you would like to call.Where are you located? 1-540-561-0917 Tonia mom of 13 year old -- In achalasia , " texasdeaton " <texasdeaton@...> wrote: > > My husband has had the following in the last month due to not being > able to eat solids, sometimes liquid, Barrium Swallow, Chest Xrays, CT > Scan, Enodoscopy with dialiation, which didn't do a darn thing to help > at all, and Manometry. Now, we are waiting for the medical > comfirmation of the Manometry so that surgery can be done. My > question, what are the statistics of this working? We don't have > insurance and don't qualify for Medicaid, so, it will be self pay. My > husband is very worried about money at this point. We have spent over > $1,500 so far just for the tests. The reason that I'm asking is > because, I have seen some horror stories of botched myotomy's and > having to have more than one and still can't eat right. My husband is > wanting to back out of the surgery and just deal with liquid the rest > of his life, because he doesn't want to waste the money if it isn't > going to help. He's only 43!! He can't live this way forever. He's > already dropped 18 lbs, and can't work very well from getting so > tired. He has actually gained a couple of pounds from drinking Ensure > all the time. > Someone please put my mind at ease here. The surgeon that is suppose > to do this is highly recommended for this. Seems this is his > specialty. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 texasdeaton wrote: ....My question, what are the statistics of this working? Welcome to our group. We are happy to have you here but sorry you need to be here. As you will see, the answer to your question depends on who you ask. Listed below are some "success rates." One thing to keep in mind is there is no fixed definition for "success." Success can be figured differently in different reports. Generally it means that the patients either reported improvement in a symptom or tests showed an improvement (even if the patient didn't notice). Success does not mean a cure or complete fix. Your level of success can be effected by the expertise and ability of the surgeon and staff doing the myotomy, and by how bad your esophagus has gotten before getting surgery. The more stretched and crooked your esophagus becomes the lower your level of success is likely to be. So, your success may not be the great success that someone else gets, or it may be better some get. Decide how much improvement you need for it to be worth it and then ask your surgeon what the chances are that he can get you that much improvement or better. http://www.merck.com/mmpe/sec02/ch012/ch012d.html Merck - Motility Disorders "..its success rate is about 85%..." http://www.emedicine.com/med/topic16.htm eMedicine - Achalasia "The operation relieves symptoms in 85-95% of patients, and the incidence of postoperative reflux is 10-15%." http://www.medscape.com/viewarticle/464256_2 Medscape - Surgical Management of Achalasia "Esophageal myotomy yields excellent results in 90% to 95% of patients." We don't have insurance ... The cost can vary a lot depending on where you have it done. Also consider that there could be complications which can drive the price up. Dilatation, if there are no complications, is a lot less. How big was the diameter used to dilate his esophagus? If it was not relatively large you may want to consider trying a lager diameter before giving up on dilatation. Sometimes doctors will start small, (too small), to avoid problems and go bigger if it doesn't work. notan Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.