Guest guest Posted February 15, 2000 Report Share Posted February 15, 2000 Kay that card was from someone else..i just replyed to it! LOL but happy VDAY anyways! --- " Tiernan, Kay " <kay.tiernan@...> wrote: > I liked the music you chose for the Blue Mountain > card ! It was > cute. I let it play on my computer for a few > minutes. > > Karin, Our family sends prayers to you and yours. > > Kay mom to , , > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2000 Report Share Posted February 15, 2000 Karin, You and your family are in our thoughts and prayers. May God Bless All of YOU!! Huckabee and family --- " Tiernan, Kay " <kay.tiernan@...> wrote: > I liked the music you chose for the Blue Mountain > card ! It was > cute. I let it play on my computer for a few > minutes. > > Karin, Our family sends prayers to you and yours. > > Kay mom to , , > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 > Did you go to see Dr. Sullivan? How did it go? You can e mail me > personally if you would like to. > kfrajerman@y... > > > mom to Sara and Casey both CVID Dear , Yes, we did go to see Dr. Sullivan. She was really nice. She asked lots of questions not only to us (his parents) but also to . liked her alot. He said it was nice to have a doctor who asked him questions and not just his parents. He is old enough to tell her how he feels and stuff. She ran More blood work. 8 tubes to be exact. She was rechecking his levels and his response to previous vacciations. She called us a week later to tell us that she thinks that has a lot of allergies and this doesn't help his IgA def. She said it's like a double whammy to the sinus's and other places like the ears, throat, etc. Any place that he needs to clear the mucus. What sh said made sense. She was going to write it all down and forward a copy to us and our ped. Hopefully this will give us a new direction to head in. My peds didn't think it was allergy related. I've asked them hundreds of times if we should have him tested for allergies, since I have sever allergies myself. They always said no. Now maybe we will have him tested to see what we can do to help him. Thanks for your concern. How is everyone in your family? Karin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 > Did you go to see Dr. Sullivan? How did it go? You can e mail me > personally if you would like to. > kfrajerman@y... > > > mom to Sara and Casey both CVID Dear , Yes, we did go to see Dr. Sullivan. She was really nice. She asked lots of questions not only to us (his parents) but also to . liked her alot. He said it was nice to have a doctor who asked him questions and not just his parents. He is old enough to tell her how he feels and stuff. She ran More blood work. 8 tubes to be exact. She was rechecking his levels and his response to previous vacciations. She called us a week later to tell us that she thinks that has a lot of allergies and this doesn't help his IgA def. She said it's like a double whammy to the sinus's and other places like the ears, throat, etc. Any place that he needs to clear the mucus. What sh said made sense. She was going to write it all down and forward a copy to us and our ped. Hopefully this will give us a new direction to head in. My peds didn't think it was allergy related. I've asked them hundreds of times if we should have him tested for allergies, since I have sever allergies myself. They always said no. Now maybe we will have him tested to see what we can do to help him. Thanks for your concern. How is everyone in your family? Karin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 Since A has to do with muscle spasms, stress can make symptoms worse. Just like a heart attack. That has been my experience anyway. I am going through similar circumstances, extreme stress in my life and spasma are worse. It definitely is something to consider.  Who knows, maybe we should go for massages instead of barium swallows lol. As for Karin. Listen to your fellow A suffers. An experienced Dr. is the key. Take someone with you to ask questions if you need to. You are in control of your body and your treatment. Good luck to all and keep up updated. ________________________________ From: Gregg <gregg_rosa@...> achalasia Sent: Wednesday, September 9, 2009 5:40:29 PM Subject: Re: Karin  Hi again, I brought this up previously but got no response, but i feel compelled to bring it up again... I have had A since 2001, and had a heller myotomy in 2005. I did the endoscopy, barium swallow, and manometry before-hand. I had a super surgeon here in Boston. However about a year ago i noticed it getting harder to swallow....and 2 weeks ago i couldnt swallow at all wothout having to regurgitate everything in my esophagus. I am convinced that my A was directly related to STRESS....i know there is no proof. In 2001, I was in Manhattan for the 9-11 attacks and i had a horribly stressful job. My job in 2005 was also terrible...now recently, work and financial stress built up again.... This time I decided to treat the cause and not the symptoms so I went to an acupunturist. ....the positive thoughts of her being able to fix my A allowed me to swallow, and then when i visited her, I was amazed that my issues were much better....I eat slow but i dont have any problems with food getting stuck.....I am going to go twice a week for the next month or so and see what happens.... It may not be your solution, but it may be worth investigating. ... ____________ _________ _________ __ From: <1x2y3zcomcast (DOT) net> achalasia@grou ps.com Sent: Wednesday, September 9, 2009 4:05:08 PM Subject: Re: Karin  Karin, One of the top gastroenterologists for achalasia is in Philadelphia, Dr. Philip O. Katz at Albert Einstein Medical Center. His telephone is (215) 456-8210. He should be able to tell you for sure whether it's achalasia and discuss treatment options. in PA ------------ --------- --------- --------- --------- -- From: " karin bateman " <nictyash (DOT) com> Sent: Wednesday, September 09, 2009 12:47 PM <achalasia@gro u ps.com> Subject: Re: Karin > im in nj ive been to philadelphia no one i know of close to me im 40 years > old and having no luck seen 15 doctors im loosing hope > > > > > From: zlmmom1 <mcnairmichelle@ aol.com> > Subject: Karin > achalasia@grou ps.com > Date: Wednesday, September 9, 2009, 9:48 AM > > > > > > > Where do you live? it is VITAL that you research (we can help) and go to > the BEST and most experienced GI and then surgeon that you can. Achalasia > is no walk in the park but with good treatment, you can live quite well. > Let us know where you are, how old you are, etc. and we'll do our best to > guide you. > Glad you found us, we have all been there and done that! > > - in NC > > >> >> Can someone please help me i was diagnosed with achalasia a couple weeks >> ago after about 2 years suffering i went through the botox which made me >> worse now im not eating its getting harder for me to drink fluids im >> getting weaker and now the latest dr i went to said he doesnt know if its >> achalasia im getting more depressed im sick of doctors i need help and it >> seems like no one can i have all the symptoms of achalasia i have been >> diagnosed but yet another dr shut the door in my face any one have any >> ideas because i sure dont have any anymore >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Karin--call the Cleveland Clinic in Cleveland Ohio--ask to speak to Dr. Rice--he is a surgeon, but I think the GI doctor he worked with is in Philadelphia--his name is Dr. Richter--if that does not work come to Boston and see Dr. Carr-Locke at the Brigham and Woman's Hospital--617-732-5656--he is a great doctor--also, he may know someone in Philadelphia if you do not want to come to Boston-- from Boston From: zlmmom1 <mcnairmichelle@ aol.com> Subject: Karin achalasia@grou ps.com Date: Wednesday, September 9, 2009, 9:48 AM  Where do you live? it is VITAL that you research (we can help) and go to the BEST and most experienced GI and then surgeon that you can. Achalasia is no walk in the park but with good treatment, you can live quite well. Let us know where you are, how old you are, etc. and we'll do our best to guide you. Glad you found us, we have all been there and done that! - in NC > > Can someone please help me i was diagnosed with achalasia a couple weeks ago after about 2 years suffering i went through the botox which made me worse now im not eating its getting harder for me to drink fluids im getting weaker and now the latest dr i went to said he doesnt know if its achalasia im getting more depressed im sick of doctors i need help and it seems like no one can i have all the symptoms of achalasia i have been diagnosed but yet another dr shut the door in my face any one have any ideas because i sure dont have any anymore > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Gregg-what is the name of your surgeon and acupunturist in Boston--I see Dr. Carr-Locke at the Brigham--had a dialiation 5 years ago--so far , so good -- from Boston > > > From: zlmmom1 <mcnairmichelle@ aol.com> > Subject: Karin > achalasia@grou ps.com > Date: Wednesday, September 9, 2009, 9:48 AM > > > > > > > Where do you live? it is VITAL that you research (we can help) and go to > the BEST and most experienced GI and then surgeon that you can. Achalasia > is no walk in the park but with good treatment, you can live quite well. > Let us know where you are, how old you are, etc. and we'll do our best to > guide you. > Glad you found us, we have all been there and done that! > > - in NC > > >> >> Can someone please help me i was diagnosed with achalasia a couple weeks >> ago after about 2 years suffering i went through the botox which made me >> worse now im not eating its getting harder for me to drink fluids im >> getting weaker and now the latest dr i went to said he doesnt know if its >> achalasia im getting more depressed im sick of doctors i need help and it >> seems like no one can i have all the symptoms of achalasia i have been >> diagnosed but yet another dr shut the door in my face any one have any >> ideas because i sure dont have any anymore >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Hi Gregg, I've been going to acupuncture for the past 2 months, and it has been a lifesaver! I don't know what I would have done if I still felt like I did before I started acupuncture. That being said, the problem has been relieved, but I still have A. I am seeing a surgeon from the University of Miami on Tuesday. Supposedly he has experience with surgery for A. since 1995 (I'll confirm all this with him on Tue.). While I would love acupuncture to cure the problem, I don't know how long I can wait or if my E will have further problems/complications because of the A. Thanks for your email...let me know how it goes for you! > >> > >> Can someone please help me i was diagnosed with achalasia a couple weeks > >> ago after about 2 years suffering i went through the botox which made me > >> worse now im not eating its getting harder for me to drink fluids im > >> getting weaker and now the latest dr i went to said he doesnt know if its > >> achalasia im getting more depressed im sick of doctors i need help and it > >> seems like no one can i have all the symptoms of achalasia i have been > >> diagnosed but yet another dr shut the door in my face any one have any > >> ideas because i sure dont have any anymore > >> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 I used Jefferson. Dr. Katz is my GI and Chojnaki (sp?) did the myotomy. The xray people at Jeff seem to loathe patients, but the sugery, 16 months ago, helped me a lot. I hear Temple has a good achalasia surgeon. Keep in mind we are not all that far from Baltimore and it's Mayo Clinic. There were references for the Phila area on the board and you could search that way or you could get a reference from the site. Dan -- Sent from my Palm Prē karin bateman wrote:  im in nj ive been to philadelphia no one i know of close to me im 40 years old and having no luck seen 15 doctors im loosing hope From: zlmmom1 & lt;mcnairmichelle@...> Subject: Karin achalasia Date: Wednesday, September 9, 2009, 9:48 AM  Where do you live? it is VITAL that you research (we can help) and go to the BEST and most experienced GI and then surgeon that you can. Achalasia is no walk in the park but with good treatment, you can live quite well. Let us know where you are, how old you are, etc. and we'll do our best to guide you. Glad you found us, we have all been there and done that! - in NC > > Can someone please help me i was diagnosed with achalasia a couple weeks ago after about 2 years suffering i went through the botox which made me worse now im not eating its getting harder for me to drink fluids im getting weaker and now the latest dr i went to said he doesnt know if its achalasia im getting more depressed im sick of doctors i need help and it seems like no one can i have all the symptoms of achalasia i have been diagnosed but yet another dr shut the door in my face any one have any ideas because i sure dont have any anymore > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2009 Report Share Posted September 11, 2009 thank you From: zlmmom1 <mcnairmichelle@ aol.com> Subject: Karin achalasia@grou ps.com Date: Wednesday, September 9, 2009, 9:48 AM  Where do you live? it is VITAL that you research (we can help) and go to the BEST and most experienced GI and then surgeon that you can. Achalasia is no walk in the park but with good treatment, you can live quite well. Let us know where you are, how old you are, etc. and we'll do our best to guide you. Glad you found us, we have all been there and done that! - in NC > > Can someone please help me i was diagnosed with achalasia a couple weeks ago after about 2 years suffering i went through the botox which made me worse now im not eating its getting harder for me to drink fluids im getting weaker and now the latest dr i went to said he doesnt know if its achalasia im getting more depressed im sick of doctors i need help and it seems like no one can i have all the symptoms of achalasia i have been diagnosed but yet another dr shut the door in my face any one have any ideas because i sure dont have any anymore > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 I agree with here. I am SO MUCH better off without my E. I don't even have a neck incision so really - NO ONE knows anything is up with me if I don't tell them. 18 months out, I make far fewer accommodations than I ever did for the last 20+ years and because I no longer have spasms, my stress level is greatly reduced. Now, with the feeding tube - it is not something I'd wish on anyone but in your current state, maybe it's not such a bad thing for a limited time. It will provide you with the nutrition and hydration you need to stay healthy ans feel better. Ask if they can give you a J-tube as opposed to NG feedings. That way at least you'll be able to hide it when you go out somewhere. You'll need a J tube anyway after your -ectomy. Just a thought. - in NC achalasia free since Jan. '08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 I also agree. Oct. 30 is my two year anniversary of having my " E " removed. I have been a lot better without that old damaged " E " in Georgia. ---------- Sent from AT & T's Wireless network using Mobile Email - karin I agree with here. I am SO MUCH better off without my E. I don't even have a neck incision so really - NO ONE knows anything is up with me if I don't tell them. 18 months out, I make far fewer accommodations than I ever did for the last 20+ years and because I no longer have spasms, my stress level is greatly reduced. Now, with the feeding tube - it is not something I'd wish on anyone but in your current state, maybe it's not such a bad thing for a limited time. It will provide you with the nutrition and hydration you need to stay healthy ans feel better. Ask if they can give you a J-tube as opposed to NG feedings. That way at least you'll be able to hide it when you go out somewhere. You'll need a J tube anyway after your -ectomy. Just a thought. - in NC achalasia free since Jan. '08 Quote Link to comment Share on other sites More sharing options...
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