Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Welcome back! We love you are are all happy you are ok! Nan Rosen _www.rosetwig.com_ (http://www.rosetwig.com/) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 carolyn- dakota's pc is the only one who will support him. his gi has refused, he doesn't want to refer outside because his " standing with his peers will be compromised. " dakota's pc is working on a letter of medical necessity as well as a referal. the hmo, optima, has told me that the gi recommendations carry more weight than the pc even though this pc has been dakota's pc since the day he was born. it's the specialist that are playing the good old boy game. dakota is 100% tube fed and cannot tolerated any liquid or solids. he has a 50lb weight loss since june of this year. his was missdiagnosised by a " specialist " which resulted in 3 hopitalization this pass summer one of which was a cardiac emergency related to severe dehydration and malnutrition. I'm tired of my 16 year old being a pawn in this game. all I'm asking from the hmo is to pay what they would normally pay an in network provider. I can't for the life of me understand why the insurance company care who does the surgery. he has to have this surgery in order to remove the tube from his nose. so if all you have to do is pay what you would normally pay and my husband and I mortgage our house to pay the rest why do they care who does the cutting? sorry I sound so hostile. is just incredibly frustrating to watch my once vibrant son reduced to groveling in an effort to live a more normal life...angela hmo nightmare achalasia <mailto:achalasia%40> Date: Thursday, November 20, 2008, 1:31 PM dakota's gi doc is refusing to write us a letter of medical necessity which will help us in our quest to have dr rice operate. dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota. he says because he works with dr rodgers he is obligated to refer to my son to dr rodgers because he, dr barnes, " depends on his relationship " with the doctors at uva. since when does a doctor not consider what the patient wants. i am cring so hard right now i can't even see how type. please please help me. should i get a lawyer? i only wants dr rice, i don't doubt dr rodgers is a good surgeon but he has only done 7 of these procedures and one of the seven had to go back. he has not kept tract of his previous patients and refuses to give us any phones numbers or information regarding his patient outcomes. when asked about the fact dakota has eosinophilic esophagitis and the impact it could have on surgery he, dr rodgers said " he didn't know. " when ask how dakota gastropresis will impact the surgery he said " i don't " know. what the hell... please if anyone can advise me, please...angela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2008 Report Share Posted November 20, 2008 The idea to contact Dr. Rice's office for help is a good one. He has treated other children with achalasia, which is not common even for doctors that treat achalasia. I would think that his office could build a case showing that such experience is important. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 , I agree with both Notan and . I'd e-mail doctor Rice, here's his contact information if you don't already have it. Rice, M.D. Head, General Thoracic Surgery Phone (216) 444-1921 Fax (216) 444-6876 _RICET@..._ (mailto:RICET@...) Tell him you were encouraged by this board to contact him. (He's had enough patients from here that he knows about this board) Tell him you have a son you'd who has achalasia and your like him to do the surgery, but you have an HMO, need a referral to come to him, but your GI will not refer you. Ask if he can help. Be sure to list your phone number and while I don't know personally Dr. Rice I know from this board that he will likely call you within days after getting the mail. Then I'd call the other GI, and do what says. So you have 2 avenue's to work from. When this is all over, and before if necessary, I'd call the medical board in your state and talk to them. I don't know the laws, but even if what he's doing does not violate the law, I'm sure it is most unethical. If you can get to Dr. Rice and work this out, I'd wait about this part until it's all over. That way they'll believe you because you have nothing to gain then by reporting him. Hold tight...get rid of the tears and get mad! Big Hugs, Maggie **************One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/100000075x1212962939x1200825291/aol?redir=h\ ttp://www.aol.com/?optin=new-dp %26icid=aolcom40vanity%26ncid=emlcntaolcom00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 is 8, and we just had surgery w/ Dr Rice in JULY 2008.  We had our Primary care doctor ( pediatrician) write the " letter of medical necessity " for recommending Dr. Rice, not any of the 3 G I doctors we saw. Hope this helps. I did include in the letter the rarity of Achalasia for adults 1 in 100,000 ?? ( can't remember at the moment, just look it up) and that only 10 % of those are children ( making it rarer)  Then another point was that PEDIATRIC SURGEONS ARE GENERAL SURGEONS, doing a little bit of everything and NOT specializing in one area.... unlike ADULT THORIAC SURGEONS are limited to treating the THORIAC AREA only, and are therefore more experienced, etc, etc..    Also if you are worried about nutrician as I was. Here are some tips that may help:  Give 2 doses instead of one childrens chewable vitamins. Make home made soups with hamburger, pasta, veggies and blend them up. Your child may be able to " lick " peanut butter, but give small amounts and wait in between portions. ( easy to over eat, and then vomit up if your child is starving)  Suck on M & M's or hard candy ( especially if light headed or a bad food day)  Vanilla Eddy frozen yogurt seemed to almost always go down. Try COLA- SYRUP found at walgreens ( for spasms, pain in chest, really worked for us)  I'm sure you tried most of these already if you found this group, but I was able to have gain about 4 pounds back and NOT lose by really watching what she ate, giving her free acess to food all day, and even at school. This was by no means a cure, but did make me feel like she wasn't getting any worse. You know what i mean? At least until we had surgery, and keeping her healthly enough to have surgery.  Don't forget crunchy items, like corn chips and dry cereal...they seemed to work good too. If you need more food ideas I can be more specific.  Good luck with everything.  You may also find another surgeon that is in network, but out of state. there are some really good docs out there, luckily DR rice was in network for our area, even though it was out-of -state, it still needed to be justified.  Google serach " top ten hospitals for Digetive disorders " you may find someone else???  Paying out of pocket could cost about $30,000. But Cleveland Clinic has some sort of financial aid if you are making less than $80,000 a year. and I think they work with " self pay " patients. If that helps any ???   _Dana Mills In VA  From: ANGELA BAKER <kotacj@...> Subject: Re: !! achalasia Date: Thursday, November 20, 2008, 8:21 PM carolyn- dakota's pc is the only one who will support him. his gi has refused, he doesn't want to refer outside because his " standing with his peers will be compromised. " dakota's pc is working on a letter of medical necessity as well as a referal. the hmo, optima, has told me that the gi recommendations carry more weight than the pc even though this pc has been dakota's pc since the day he was born. it's the specialist that are playing the good old boy game. dakota is 100% tube fed and cannot tolerated any liquid or solids. he has a 50lb weight loss since june of this year. his was missdiagnosised by a " specialist " which resulted in 3 hopitalization this pass summer one of which was a cardiac emergency related to severe dehydration and malnutrition. I'm tired of my 16 year old being a pawn in this game. all I'm asking from the hmo is to pay what they would normally pay an in network provider. I can't for the life of me understand why the insurance company care who does the surgery. he has to have this surgery in order to remove the tube from his nose. so if all you have to do is pay what you would normally pay and my husband and I mortgage our house to pay the rest why do they care who does the cutting? sorry I sound so hostile. is just incredibly frustrating to watch my once vibrant son reduced to groveling in an effort to live a more normal life...angela hmo nightmare achalasia@grou ps.com<mailto:achalasia% 40groups. com> Date: Thursday, November 20, 2008, 1:31 PM dakota's gi doc is refusing to write us a letter of medical necessity which will help us in our quest to have dr rice operate. dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota. he says because he works with dr rodgers he is obligated to refer to my son to dr rodgers because he, dr barnes, " depends on his relationship " with the doctors at uva. since when does a doctor not consider what the patient wants. i am cring so hard right now i can't even see how type. please please help me. should i get a lawyer? i only wants dr rice, i don't doubt dr rodgers is a good surgeon but he has only done 7 of these procedures and one of the seven had to go back. he has not kept tract of his previous patients and refuses to give us any phones numbers or information regarding his patient outcomes. when asked about the fact dakota has eosinophilic esophagitis and the impact it could have on surgery he, dr rodgers said " he didn't know. " when ask how dakota gastropresis will impact the surgery he said " i don't " know. what the hell... please if anyone can advise me, please...angela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 carolyn- ok breath. dakota is 100% tube fed. he cannot eat or drink anything. he has a nasododenal tube. this tube was inserted this summer after a 50lb weight loss.first gi fired, second gi doc excellent, caring, listened to us, but couldn't figure what was wrong and refered us to 3rd gi doc. 3rd gi doc figured it out but now refuses to write us a letter of medical neccesity to see doctor rice. 3rd doc wants us to see dr rodgers ,surgeon, who has only done a total of 7 hellers in his 30 year career. our insurance company has already approved this doc. the referal to this surgeon was done without our knowledge. I totally agree with you when you say young arrogant pup.the reason he gave us for refering us to this surgeon is because , " I have to refer to someone in our system or it would seem like I don't have confidence in our surgeons. " read, " I want to sit at the big boys table. " we did meet with this surgeon and that is where we learned he'd only done seven surgeries, he knew nothing of eosinophilic esophagitis or gastroparesis and the impact surgey could have on these conditions. after several discussions between my husband and myself we told the surgeon we were not going with him only to find out the surgery had already been approved. we do have an awesome primary care doc who is writing a letter of medical neccesity and today dakota's 2nd gi doc wrote us a letter. we do not have a surgical date set because I was waiting to get insurance approval for cc. if I'm hearing you right, the primary care docs referal carries the most weight with the insurance company. how do I undo the damage already done by dr barrette barnes with regard to this surgical referal? or do I even need to. will the insurance company take issue with me because of this? or will they let it go because I do have a primary care doc and as of today a gi doc who are willing to support us? thanks for taking time to help me breath. when I read you post I felt some anxiey lift...angela hmo nightmare achalasia <mailto:achalasia%40> Date: Thursday, November 20, 2008, 1:31 PM dakota's gi doc is refusing to write us a letter of medical necessity which will help us in our quest to have dr rice operate. dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota. he says because he works with dr rodgers he is obligated to refer to my son to dr rodgers because he, dr barnes, " depends on his relationship " with the doctors at uva. since when does a doctor not consider what the patient wants. i am cring so hard right now i can't even see how type. please please help me. should i get a lawyer? i only wants dr rice, i don't doubt dr rodgers is a good surgeon but he has only done 7 of these procedures and one of the seven had to go back. he has not kept tract of his previous patients and refuses to give us any phones numbers or information regarding his patient outcomes. when asked about the fact dakota has eosinophilic esophagitis and the impact it could have on surgery he, dr rodgers said " he didn't know. " when ask how dakota gastropresis will impact the surgery he said " i don't " know. what the hell... please if anyone can advise me, please...angela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 , I hope your feeling better today!! Speaking of the gastroparesis, Dr Rice did a procedure to make mine empty a little faster, so that I could get more food in and not stay " full " for so long!!! Now I eat about every 2 hours, biggest meal is dinner but in 2 hours I'm starving LOL! I should be as big as a house LOL!!! How is Dakota doing through all of this? I'm sure it is more then just tough on him!! This has to be mentally weighing on him too!!! I don't know if I as an adult could deal with having a tube in for that long!! I think I would have already ripped it out! Actually I did rip mine out once..boy I made Dr. Rice mad as a hornet!! I have issues with the tubes, but that's a whole other story! Lordy I hope you can get all of this settled soon!! For your peace of mind and for Dakota..bless his heart!! And don't you worry any time you need to vent just call!!!! That's what we are all here for!! No Matter What!! You and Yours Take care!! Know that we all are here for you!!! From: achalasia [mailto:achalasia ] On Behalf Of ANGELA BAKER Sent: Friday, November 21, 2008 5:42 PM achalasia Subject: Re: !! carolyn- ok breath. dakota is 100% tube fed. he cannot eat or drink anything. he has a nasododenal tube. this tube was inserted this summer after a 50lb weight loss.first gi fired, second gi doc excellent, caring, listened to us, but couldn't figure what was wrong and refered us to 3rd gi doc. 3rd gi doc figured it out but now refuses to write us a letter of medical neccesity to see doctor rice. 3rd doc wants us to see dr rodgers ,surgeon, who has only done a total of 7 hellers in his 30 year career. our insurance company has already approved this doc. the referal to this surgeon was done without our knowledge. I totally agree with you when you say young arrogant pup.the reason he gave us for refering us to this surgeon is because , " I have to refer to someone in our system or it would seem like I don't have confidence in our surgeons. " read, " I want to sit at the big boys table. " we did meet with this surgeon and that is where we learned he'd only done seven surgeries, he knew nothing of eosinophilic esophagitis or gastroparesis and the impact surgey could have on these conditions. after several discussions between my husband and myself we told the surgeon we were not going with him only to find out the surgery had already been approved. we do have an awesome primary care doc who is writing a letter of medical neccesity and today dakota's 2nd gi doc wrote us a letter. we do not have a surgical date set because I was waiting to get insurance approval for cc. if I'm hearing you right, the primary care docs referal carries the most weight with the insurance company. how do I undo the damage already done by dr barrette barnes with regard to this surgical referal? or do I even need to. will the insurance company take issue with me because of this? or will they let it go because I do have a primary care doc and as of today a gi doc who are willing to support us? thanks for taking time to help me breath. when I read you post I felt some anxiey lift...angela hmo nightmare achalasia <mailto:achalasia%40> <mailto:achalasia%40> Date: Thursday, November 20, 2008, 1:31 PM dakota's gi doc is refusing to write us a letter of medical necessity which will help us in our quest to have dr rice operate. dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota. he says because he works with dr rodgers he is obligated to refer to my son to dr rodgers because he, dr barnes, " depends on his relationship " with the doctors at uva. since when does a doctor not consider what the patient wants. i am cring so hard right now i can't even see how type. please please help me. should i get a lawyer? i only wants dr rice, i don't doubt dr rodgers is a good surgeon but he has only done 7 of these procedures and one of the seven had to go back. he has not kept tract of his previous patients and refuses to give us any phones numbers or information regarding his patient outcomes. when asked about the fact dakota has eosinophilic esophagitis and the impact it could have on surgery he, dr rodgers said " he didn't know. " when ask how dakota gastropresis will impact the surgery he said " i don't " know. what the hell... please if anyone can advise me, please...angela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 thanks jewels-today dakota's second gi doc, the one who refered us to uva wrote us a letter of medical necessity to go to cc, 3rd gi doc, uva doc, called to say he refuses to refer us to cc. so even though uva doc diagnosised dakota and I am grateful for that I feel he really doesn't care about what we as a family want. also dakota's primary care has agreed to write us a letter. soooo..we have 2 letters, I guess our next step to to collect medical records to send to dr rice and sent letters with supporting records to insurance company. let me know if this sounds like the correct order or I need to be focusing on something else. of course my life has to have a frigin' twist. I found out today my mother's brother, my uncle jimmy has inoperable stomach cancer. scary. he complained this summer over the fourth of july of being, of all things, unable to swallow. since dakota was going through all his drama I encouraged my uncle to see a gi guy. he finally did, and well..not good. I just want to thank you for being there for me, sorry if I blew your ear drums apart... I owe you one...angela hmo nightmare achalasia <mailto:achalasia%40> <mailto:achalasia%40> <mailto:achalasia%40> Date: Thursday, November 20, 2008, 1:31 PM dakota's gi doc is refusing to write us a letter of medical necessity which will help us in our quest to have dr rice operate. dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota. he says because he works with dr rodgers he is obligated to refer to my son to dr rodgers because he, dr barnes, " depends on his relationship " with the doctors at uva. since when does a doctor not consider what the patient wants. i am cring so hard right now i can't even see how type. please please help me. should i get a lawyer? i only wants dr rice, i don't doubt dr rodgers is a good surgeon but he has only done 7 of these procedures and one of the seven had to go back. he has not kept tract of his previous patients and refuses to give us any phones numbers or information regarding his patient outcomes. when asked about the fact dakota has eosinophilic esophagitis and the impact it could have on surgery he, dr rodgers said " he didn't know. " when ask how dakota gastropresis will impact the surgery he said " i don't " know. what the hell... please if anyone can advise me, please...angela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 Congratulations on getting your referral letter to Dr. Rice . At last some progress. So sorry to hear that your Uncle Jimmy has stomach cancer. Please keep this group informed about Dakota's referral to see Dr. Rice and please also bear in mind that there is also support here for your uncle.. ________________________________ From: ANGELA BAKER <kotacj@...> achalasia Sent: Saturday, November 22, 2008 2:28:54 AM Subject: Re: !! thanks jewels-today dakota's second gi doc, the one who refered us to uva wrote us a letter of medical necessity to go to cc, 3rd gi doc, uva doc, called to say he refuses to refer us to cc. so even though uva doc diagnosised dakota and I am grateful for that I feel he really doesn't care about what we as a family want. also dakota's primary care has agreed to write us a letter. soooo..we have 2 letters, I guess our next step to to collect medical records to send to dr rice and sent letters with supporting records to insurance company. let me know if this sounds like the correct order or I need to be focusing on something else. of course my life has to have a frigin' twist. I found out today my mother's brother, my uncle jimmy has inoperable stomach cancer. scary. he complained this summer over the fourth of july of being, of all things, unable to swallow. since dakota was going through all his drama I encouraged my uncle to see a gi guy. he finally did, and well..not good. I just want to thank you for being there for me, sorry if I blew your ear drums apart... I owe you one...angela hmo nightmare achalasia@grou ps.com<mailto:achalasia% 40groups. com> <mailto:achalasia% 40groups. com> <mailto:achalasia% 40groups. com> Date: Thursday, November 20, 2008, 1:31 PM dakota's gi doc is refusing to write us a letter of medical necessity which will help us in our quest to have dr rice operate. dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota. he says because he works with dr rodgers he is obligated to refer to my son to dr rodgers because he, dr barnes, " depends on his relationship " with the doctors at uva. since when does a doctor not consider what the patient wants. i am cring so hard right now i can't even see how type. please please help me. should i get a lawyer? i only wants dr rice, i don't doubt dr rodgers is a good surgeon but he has only done 7 of these procedures and one of the seven had to go back. he has not kept tract of his previous patients and refuses to give us any phones numbers or information regarding his patient outcomes. when asked about the fact dakota has eosinophilic esophagitis and the impact it could have on surgery he, dr rodgers said " he didn't know. " when ask how dakota gastropresis will impact the surgery he said " i don't " know. what the hell... please if anyone can advise me, please...angela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 thanks christine- I feel so very suppoted here. this all stated with vicky and tonia reaching out to me. now I feel as if I have a whole family loving me through this. word cannot express what I am feeling this morning. yall fight for me when I'm feeling beat down. your collective strenght enocourages me...angela hmo nightmare achalasia@grou ps.com<mailto:achalasia% 40groups. com> <mailto:achalasia% 40groups. com> <mailto:achalasia% 40groups. com> Date: Thursday, November 20, 2008, 1:31 PM dakota's gi doc is refusing to write us a letter of medical necessity which will help us in our quest to have dr rice operate. dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota. he says because he works with dr rodgers he is obligated to refer to my son to dr rodgers because he, dr barnes, " depends on his relationship " with the doctors at uva. since when does a doctor not consider what the patient wants. i am cring so hard right now i can't even see how type. please please help me. should i get a lawyer? i only wants dr rice, i don't doubt dr rodgers is a good surgeon but he has only done 7 of these procedures and one of the seven had to go back. he has not kept tract of his previous patients and refuses to give us any phones numbers or information regarding his patient outcomes. when asked about the fact dakota has eosinophilic esophagitis and the impact it could have on surgery he, dr rodgers said " he didn't know. " when ask how dakota gastropresis will impact the surgery he said " i don't " know. what the hell... please if anyone can advise me, please...angela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 dana- when dakota tries to eat or drink anything he throwsup but he still wants to taste things. I,ve told him he can chew something and spit it out, but that isn't satisfying. do you think it's better to let them eat something and let him throwup or just tell him not to eat anything. I've read some discussion here about the weight of fluids causing damage etc. is the vomiting causing damage or the weight from the food or liquids sitting in his esophagus? with his nd tube in I'm not so worried about nutrition. he has gained back 15lbs since starting the tubefeeding. but I am concerned about the psych. thing. I didn't realize the amount of mental attachmet people have to foods. it's like scratching an itch. scratching feels good but is it good for you? or does anyone know and the best we can do as parents is to guess? I'm interested in your thoughts on this...angela hmo nightmare achalasia@grou ps.com<mailto:achalasia% 40groups. com> Date: Thursday, November 20, 2008, 1:31 PM dakota's gi doc is refusing to write us a letter of medical necessity which will help us in our quest to have dr rice operate. dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota. he says because he works with dr rodgers he is obligated to refer to my son to dr rodgers because he, dr barnes, " depends on his relationship " with the doctors at uva. since when does a doctor not consider what the patient wants. i am cring so hard right now i can't even see how type. please please help me. should i get a lawyer? i only wants dr rice, i don't doubt dr rodgers is a good surgeon but he has only done 7 of these procedures and one of the seven had to go back. he has not kept tract of his previous patients and refuses to give us any phones numbers or information regarding his patient outcomes. when asked about the fact dakota has eosinophilic esophagitis and the impact it could have on surgery he, dr rodgers said " he didn't know. " when ask how dakota gastropresis will impact the surgery he said " i don't " know. what the hell... please if anyone can advise me, please...angela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 I'm so glad you got those letters!! I am sorry about your uncle!! It is scary!! With Achalasia you run a higher risk of developing E cancer, though I don't know of any of us that have went that way though! I supposedly have Barrett's, but no one can tell me yes for sure or no for sure! First you can take records or sent the records, but be prepared that Dr. Rice and the GI's up there will want to do their own tests!!! The barium swallow, the manometery, and possibly an endoscopy! Most of us found out the hard way..thinking they would just look at tests from outside of CCF! They really like to use their own people!! As for the insurance company, call them and ask them what they need (unless you already know). Make your appointments for the GI at CCF and also tell them that you know your son will need the Heller surgery and ask for an appointment with Dr. Rice! When you make your appointment with Dr. Rice, Ask if you can do all of your consultation and the surgery in one trip or if they will have to have you come back! If you try to do all of it at once you may be up there longer! SO I guess its up to you if you want to make two shorter trips, or one long one! I think Tonia can tell you that she used a ped. advocate for . I think that helped her some!!! Make sure to ask her about that!! Dr. Rice is use to dealing with adults, not children all the time! I know Dakota is older then was at the time so maybe that will be to your benefit! Ok this is getting really long!! If you have any other questions!! Please call me!! I've been up there several times and could help you with anything that you might need! From: achalasia [mailto:achalasia ] On Behalf Of ANGELA BAKER Sent: Friday, November 21, 2008 8:29 PM achalasia Subject: Re: !! thanks jewels-today dakota's second gi doc, the one who refered us to uva wrote us a letter of medical necessity to go to cc, 3rd gi doc, uva doc, called to say he refuses to refer us to cc. so even though uva doc diagnosised dakota and I am grateful for that I feel he really doesn't care about what we as a family want. also dakota's primary care has agreed to write us a letter. soooo..we have 2 letters, I guess our next step to to collect medical records to send to dr rice and sent letters with supporting records to insurance company. let me know if this sounds like the correct order or I need to be focusing on something else. of course my life has to have a frigin' twist. I found out today my mother's brother, my uncle jimmy has inoperable stomach cancer. scary. he complained this summer over the fourth of july of being, of all things, unable to swallow. since dakota was going through all his drama I encouraged my uncle to see a gi guy. he finally did, and well..not good. I just want to thank you for being there for me, sorry if I blew your ear drums apart... I owe you one...angela hmo nightmare achalasia <mailto:achalasia%40> <mailto:achalasia%40> <mailto:achalasia%40> <mailto:achalasia%40> Date: Thursday, November 20, 2008, 1:31 PM dakota's gi doc is refusing to write us a letter of medical necessity which will help us in our quest to have dr rice operate. dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota. he says because he works with dr rodgers he is obligated to refer to my son to dr rodgers because he, dr barnes, " depends on his relationship " with the doctors at uva. since when does a doctor not consider what the patient wants. i am cring so hard right now i can't even see how type. please please help me. should i get a lawyer? i only wants dr rice, i don't doubt dr rodgers is a good surgeon but he has only done 7 of these procedures and one of the seven had to go back. he has not kept tract of his previous patients and refuses to give us any phones numbers or information regarding his patient outcomes. when asked about the fact dakota has eosinophilic esophagitis and the impact it could have on surgery he, dr rodgers said " he didn't know. " when ask how dakota gastropresis will impact the surgery he said " i don't " know. what the hell... please if anyone can advise me, please...angela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 thanks maggie...I do pretty good for a while then when something hits a just shatter. this menopause carp isn't helping...EMO..my son would say..angela Re: !! , I agree with both Notan and . I'd e-mail doctor Rice, here's his contact information if you don't already have it. Rice, M.D. Head, General Thoracic Surgery Phone (216) 444-1921 Fax (216) 444-6876 _RICET@...<mailto:_RICET@...>_ (mailto:RICET@...<mailto:RICET@...>) Tell him you were encouraged by this board to contact him. (He's had enough patients from here that he knows about this board) Tell him you have a son you'd who has achalasia and your like him to do the surgery, but you have an HMO, need a referral to come to him, but your GI will not refer you. Ask if he can help. Be sure to list your phone number and while I don't know personally Dr. Rice I know from this board that he will likely call you within days after getting the mail. Then I'd call the other GI, and do what says. So you have 2 avenue's to work from. When this is all over, and before if necessary, I'd call the medical board in your state and talk to them. I don't know the laws, but even if what he's doing does not violate the law, I'm sure it is most unethical. If you can get to Dr. Rice and work this out, I'd wait about this part until it's all over. That way they'll believe you because you have nothing to gain then by reporting him. Hold tight...get rid of the tears and get mad! Big Hugs, Maggie **************One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/100000075x1212962939x1200825291/aol?redir=h\ ttp://www.aol.com/?optin=new-dp<http://pr.atwola.com/promoclk/100000075x12129629\ 39x1200825291/aol?redir=http://www.aol.com/?optin=new-dp> %26icid=aolcom40vanity%26ncid=emlcntaolcom00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 ANGELA wrote: > ... I've read some discussion here about the weight of fluids causing damage etc. is the vomiting causing damage or the weight from the food or liquids sitting in his esophagus? It isn't doing him any good but it is hard to know what it may be doing. If he can't get any food through his LES some of the food may be staying in the esophagus for days just rotting. It is suspected that it may play a part in esophageal cancer risk. The microbes doing the rotting and acids produced by fermentation may lead to esophagitis or infection. It could be bad to aspirate that gunk it into the lungs too. At that to the idea that the esophagus may be dilating. The risks are not low so don't freak. What you are calling vomiting is probably what we call regurgitation. Often this is less violent than vomiting. True vomiting can cause damage, tears, even in otherwise healthy people that don't have achalasia. Again, the risk is small. > ... I didn't realize the amount of mental attachmet people have to foods. There is a risk of depression with any chronic disease and this is true for achalasia. There is also a risk of depression when any of the basics stimulations or pleasures of life are hindered. Achalasia takes a toll on the pleasure of eating and also on all the social activities around eating. So don't just focus on the risks above without considering the risk of depression. This may be a very real risk. Often when we have a reason to feel badly we dismiss depression as unimportant. I don't think that is wise. One needs to find stimulation and pleasure in other areas to make up for the loss. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 , sounds like your son is more extreme, since he has a tube feeding.So some of these things may not work, this system seemed to work for us, but everyone is different.  If you look up " foods to avoid for GERD or reflux " you will notice:  Chocolate pepermint or mint cafeeine ( sodas)  are all to be avoided, because they loosen the LES (lower espogeal spintcer muscle)  some people on this group swear by drinking ( forcing) coke cola, they are then able to eat better.(just a meal directly after this)  any are worth a try.  liquids do stretch the esophagus more, as solids just sit there.  the question to ask about eating foods is a little tricky. if your son as at the point where everyday swallowing saliva, then forcing foods it not going to work well.  things to consider trying: eat standing up pacing may feel better until the food can go down try " suckable things " hardcandy, m & m's ice cream/ frozen yogurt make sure any food is eaten slowly, " bird like bites and portions " just the amount can be part of the problem ( anything eaten too fast, can't go through fast enough) 6-8 small meals snacks are needed each day  dumb question but does your son have food stuck?  My daughter had a small piece of potato in her throat for over 1 whole day. finally, i helped her stick her fingers down her throat, and out came a small potato piece,the next day she ate better. The syptoms before this was vomiting everything for about 1 and a half days.  some people have good and bad days, so it would not hurt to eat 3 bites as a test. usually by 3 bites we knew if a food was going to " work " or not.I wouldn't force this, but gently remind your child, " you can have this but you know what may happen " I think that helps the child feel a little more in charge,  also, i noticed if vomited, if we did not wait to eat  about 4 hours after , again would just vomit up everything. even her " safe food " would be vomited up. ( i would be fearing she was getting worse, when really her tummy was upset from the vomiting, like the gag reflex)  Relaxing helps, I felt better when I didn't count calories or meals, but I did probably encourage " do you want to eat a snack? " like 10 times a day which , because was 7 years old when this started, I felt I needed to do. Not sure if this was the right thing to do.  we had safe foods that would almost always go down without issues, but on bad days couldn't keep much down.  cheerios cereal, dry vanilla eddys frozen yogurt w/ chocolate syrup utz gluten free corn chips peanut butter , 1 spoon lightly coated, to lick butterscott hard candy ghardille carmal inside choc. squares, sucking on pieces Rameon noodle soup, throw out noodles (just broth)  hope this helps, I'm visiting family, and a little tired, hopes this makes sense??? for dental concerns:  brush directly after vomiting nightime swish ACT with florine for 1 minute, do right before bed and no eating or drinking afterward this was reccommended by a pediatric dentist specilist I used to see for my autistic son.  I wish I could help more, I feel for you. Hopefully, your son will get treatment soon. Dana in VA  From: ANGELA BAKER <kotacj@...<mailto:kotacj% 40msn.com> > Subject: Re: !! achalasia@grou ps.com<mailto:achalasia% 40groups. com> Date: Thursday, November 20, 2008, 8:21 PM carolyn- dakota's pc is the only one who will support him. his gi has refused, he doesn't want to refer outside because his " standing with his peers will be compromised. " dakota's pc is working on a letter of medical necessity as well as a referal. the hmo, optima, has told me that the gi recommendations carry more weight than the pc even though this pc has been dakota's pc since the day he was born. it's the specialist that are playing the good old boy game. dakota is 100% tube fed and cannot tolerated any liquid or solids. he has a 50lb weight loss since june of this year. his was missdiagnosised by a " specialist " which resulted in 3 hopitalization this pass summer one of which was a cardiac emergency related to severe dehydration and malnutrition. I'm tired of my 16 year old being a pawn in this game. all I'm asking from the hmo is to pay what they would normally pay an in network provider. I can't for the life of me understand why the insurance company care who does the surgery. he has to have this surgery in order to remove the tube from his nose. so if all you have to do is pay what you would normally pay and my husband and I mortgage our house to pay the rest why do they care who does the cutting? sorry I sound so hostile. is just incredibly frustrating to watch my once vibrant son reduced to groveling in an effort to live a more normal life...angela hmo nightmare achalasia@grou ps.com<mailto: achalasia% 40groups. com> Date: Thursday, November 20, 2008, 1:31 PM dakota's gi doc is refusing to write us a letter of medical necessity which will help us in our quest to have dr rice operate. dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota. he says because he works with dr rodgers he is obligated to refer to my son to dr rodgers because he, dr barnes, " depends on his relationship " with the doctors at uva. since when does a doctor not consider what the patient wants. i am cring so hard right now i can't even see how type. please please help me. should i get a lawyer? i only wants dr rice, i don't doubt dr rodgers is a good surgeon but he has only done 7 of these procedures and one of the seven had to go back. he has not kept tract of his previous patients and refuses to give us any phones numbers or information regarding his patient outcomes. when asked about the fact dakota has eosinophilic esophagitis and the impact it could have on surgery he, dr rodgers said " he didn't know. " when ask how dakota gastropresis will impact the surgery he said " i don't " know. what the hell... please if anyone can advise me, please...angela 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.