Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Hey Tonia. It was Dr. Patti in San Francisco. with Dr. Farmer the Chief of Peds Surg. assisting Wow, I hope this year is so much better for you than this last.... It is so hard. Cameron is seeing a Physical Therapist to learn how to work out with out pulling and putting stress on those parts. It's working out well, he has learned alot. wishing you the best! Carolyntoniasdogsandi <toniasdogsandi@...> wrote: Thanks Carolyn-Glad he is doing so well,thats great! seems to be ok now.I just believ it was this cold.I have not talked to Rice yet,I will just wait unless has other issues cause we will see him on the 18th anyway.Who done Camerons surgery>I thought it was Rice for some reason.I am going to ask Rice if that can be done if a issue should arise.This way I can know if we need to make a trip or not. family Dr said he could do the barrium here and mail to him if needed but this DR on call said NO! I think Rice will say the same but thats how it is going to be.Well do a barrium and send it for review before we jump and run up there at every issue or concern.Its the same if we do it here and he reads it there, or if its done up there and then he reads it.Either way he will know if its a concern before a 8 hour trip is needed. Anyway- I am so glad to hear Cameron is doing well.I hope he continues to have another great year in 2007!!HAPPY NEW YEAR TO YOU GUYS!!!!Tonia> > > > The other night informed his dad and myself that he has > > been > > > > having some issues with food feeling like its getting stuck or > > not > > > > going down well.ALSO HAS BEEN HAVING ALOT OF THE "FOAMY"STUFF > > > AGAIN.> > > > He said he didnt tell us earlier becuase he said hes going > > through > > > > anything else again and didnt want us dragging him to > Cleveland > > > and > > > > being there at Christmas. I called DR Rice today and told them > > > what > > > > was going on.Rice is out of town but his partner or whoever > said > > > he > > > > wanted up there tomorrow.I expressed to them it wasnt > that > > > > easy.We have to get work situated for my husband,dog > > > boarded,someone > > > > to watch the house,hotel reservations,bags backed and plus my > > > > husband was out of town and hadnt even got home tonight when I > > was > > > > told all this.He had been driving for a while and there is no > > way > > > we > > > > can just jump in the car tonight and drive 8 hours no sleep.I > > dont > > > > think 's situation is as bad as they are making it but I > am > > > not > > > > the Dr but I am not letting anyone other than Rice touch -> > > > colleage or not anyway! > > > > They said should not be having any problems and he > needed > > to > > > > be seen tomorrow regardless.> > > > If he was vmiting,spitting blood or something a litle more > > severe > > > we > > > > would of course drop everything and go but I think someone is > > > being > > > > a little to jumpy.Dr Rice is out of town until Tuesday so I > > think > > > > this other DR does not want nothing being held over his head > so > > he > > > > wants to see to just be careful.If there was something > > wrong > > > > like I said no one except Rice is messing with him unless of > > > course > > > > it was a life or death kinda ordeal but I dont see it as > > that.They > > > > want to do a barrium and possible scope if needed.> > > > Heres where I need your help-I know its all personal opinion > and > > > > preference but what would you all do in this situation? Should > I > > > go > > > > on Friday after I have time to get these things together and > we > > > get > > > > some sleep for the ride or just waitt ill we talk to Rice on > > > > Tuesday? I JUST AM CONFUSED AS TO WHAT TO DO. is eating > > like > > > a > > > > pig and everything.He does have a cold and has a cough and > > > sniffles > > > > and such but other than that he is fine,no other problems.He > had > > > > roast beef sandwiches from Arbys today and large curly fry and > > > > cocunut cake for desert with no problems.Ijust think its > jumping > > > too > > > > quickly over something not that serious.Please what do you all > > > > think???I dont want to run up ther for only a barrium and it > be > > > > nothing wrong but dont want not to go and it be something but > if > > > > thats the case we would wait till tuesday for Rice to get back > > in > > > > anayway.I kinda think its where he has bee having this cold > and > > > > dealing with all the phlem and such in his esophagus.Help me > > > > please!!!!!!!!Tonia> > > > > > > > > > > > > > > > > > > > > > > > > > > >> > > Recent Activity> > 10> New Members> > Visit Your Group > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Andy- Here is my e mail at home.I have never used the e mail tcooper1973@... I would love to see a picture of your dog. Tonia > > > > > > Hi > > > > > > Hope everybody has had a good holiday and looking forward to > their > > impending > > > surgery. I myself have got a myotomy scheduled for the 18 > January > > which is a > > > bit nerve racking considering I have never really had any > surgery > > so to > > > speak and I lost my Son just before Christmas during/after > surgery > > so my > > > mind will be on overtime as it gets nearer. > > > > > > Had a call from the hospital yesterday just to check some > medical > > details > > > and to confirm my MRSA swabs were clear so it's all systems go... > > > > > > > > > > > > Just a quick request - what should I expect short term in the > way > > of eating > > > - mine is the keyhole method and I am expected to be discharged > > after 2 > > > nights all being well. > > > > > > > > > > > > Thanks again for all the kind comments regarding my Son, - > > it's still > > > pretty difficult but I am trying to look to the future as at the > > end of the > > > day that's all I can do! As the Father said at the funeral, > > `lived' > > > his short 21 years whereas he `sees' many people who are 80+ and > > have just > > > existed for most of their life - I think you will know what I > mean. > > For > > > example had never been out of this country (UK) but there > > weren't many > > > place within it where he hadn't been whereas some kids have > their > > annual 2 > > > week holiday in the sun but have never been 200 miles down the > road > > to their > > > countries Capital (London) - he loved exploring. > > > > > > > > > > > > Andy > > > > > > > > > > > > Yorkshire - England > > > > > > > > > > > > From: scent4u18 [mailto:honey- les@] > > > Sent: 05 January 2008 11:08 > > > achalasia@grou <mailto:achalasia%40> > ps.com > > > Subject: hey ectomy girls > > > > > > > > > > > > Dear a: > > > My thoughts and prayers for a successful surgery and a speedy > > > recovery. You are in my prayers. > > > Hugs, > > > Anita from Pa. > > > > > > > > > > > > > > > _____ > > > > Be a better friend, newshound, and know-it-all with Mobile. > Try > > > <http://us.rd./evt=51733/*http:/mobile./;_ylt=Ahu06 > i62sR8H > > DtDypao8Wcj9tAcJ%20> it now. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 This sounds great...Richmond is only two hours from me.... InVA > > I think having a big meetup would be awesome. How about someplace like > Richmond? It's pretty centrally located and easy to get to. > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 Awe mannnn I can't make it LOL. I think that's a little far for me or I would totally crash your get together!!! From: achalasia [mailto:achalasia ] On Behalf Of sandragphipps Sent: Monday, November 10, 2008 5:12 PM achalasia Subject: Re: Tonia This sounds great...Richmond is only two hours from me.... InVA > > I think having a big meetup would be awesome. How about someplace like > Richmond? It's pretty centrally located and easy to get to. > > - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 I wish you could, . Update me, please. What happened at the Mayo Clinic. I have gone back to work a little earlier than planned, so I haven't been online very much. InVA > > > > I think having a big meetup would be awesome. How about someplace like > > Richmond? It's pretty centrally located and easy to get to. > > > > - > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 Well the GI doc was an.well I'll be nice, he wasn't nice!! The rheumatologist was really nice and I'm waiting on results. Though he said that what ever it is may not show up for a while.I just may be having the effects early from it.or it could be that there are so many auto immune disease in the family that I'm just a catch all for a little of all of them!! UGH!!! That's about it in a nut shell!!! From: achalasia [mailto:achalasia ] On Behalf Of sandragphipps Sent: Monday, November 10, 2008 6:32 PM achalasia Subject: Re: Tonia I wish you could, . Update me, please. What happened at the Mayo Clinic. I have gone back to work a little earlier than planned, so I haven't been online very much. InVA > > > > I think having a big meetup would be awesome. How about someplace like > > Richmond? It's pretty centrally located and easy to get to. > > > > - > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Thanks ! Yeah BIG Diffrence : ) Such a blessing!!! Tonia > > Hi Tonia, > > I can't believe the difference in from the hospital picture until > now! Unbelievable! I just had to comment. Nice car too! > > Have a great day, > > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2009 Report Share Posted July 3, 2009 Thanks ! I actually sent him a e mail and will await his reply. Laying around the pool normally sounds like me in the summer too but this time around it seems like all Dr appointments and computer research.I really need to try and take a few days and keep my mind clear of all this.It seems to be consuming me but I hate there is nothing I can do to get him better.It just sucks! I may give you a call.Thanks for all the info and support ! Tonia > > I am so very sorry to hear that you did not get better answers. > Here is the contact info for Dr. Luketich at UPMC. It should be about the same distance from you as TCC. I don't know how many myo's Dr. L does, I chose him because he does 150 -ectomies a year and that's what I needed. I think based on that, he knows his way around an esophagus. We have had a few members here getting myo's from him and I think they were all happy. > luketichjd @ upmc.edu (take out spaces) > their phone number is 412-647-7555 > His scheduling nurse is Aimee McBroom - she is great. Her email is mcbrooma @ upmc.edu > now of course this is a holiday weekend, so unfortunately, I don't know that I would count on hearing from him today. He did call me personally the day I emailed him but Fridays are surgical days for him. He's in his office/appts. on Tues and Thurs. > You may just want to speak with Aimee and see if she if you can fax her copies of your records and see if she can get him at the end of the day or just schedule with her for next week. They are VERY good at accommodating you quickly. As I'm sure is the case with TCC though - you will be shuffled around a lot to different tests and there will be long periods of waiting. That is how the big places usually go. > something to note here - he takes the month of Aug. off so if you are even considering going to see him - I'd do it now. > Call me if you need anything. I'm off for the summer and other than errands and the pool, I'm around alot right now. > 252-256-3843 > > Tell to hang in there. We'll figure something out. > you hang in there too mom. > > Sending lots of love your way!! > - in NC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2009 Report Share Posted July 3, 2009 just a suggestion. You may try and call/email Aimee at his office and at the very least, she can work on getting you the release form to get all of your records sent over from TCC. that way, Dr. L has something to look at and review before calling you. Obviously, this weekend is going to be tough getting through to anyone although maybe they'll have fewer people who have scheduled surgeries due to the holiday. Good luck, keep us posted and feel free to call at anytime. Here's another quick thought. Since ' swallowing seems to be related to spasming - have you tried giving him about 1/2 glass of wine to help him relax? I'd certainly otherwise never suggest giving alcohol to a minor but desperate times... I found that the first few months after my -ectomy, wine with dinner helped me to be able to consume more than just my few bites. > > > > I am so very sorry to hear that you did not get better answers. > > Here is the contact info for Dr. Luketich at UPMC. It should be about the same distance from you as TCC. I don't know how many myo's Dr. L does, I chose him because he does 150 -ectomies a year and that's what I needed. I think based on that, he knows his way around an esophagus. We have had a few members here getting myo's from him and I think they were all happy. > > luketichjd @ upmc.edu (take out spaces) > > their phone number is 412-647-7555 > > His scheduling nurse is Aimee McBroom - she is great. Her email is mcbrooma @ upmc.edu > > now of course this is a holiday weekend, so unfortunately, I don't know that I would count on hearing from him today. He did call me personally the day I emailed him but Fridays are surgical days for him. He's in his office/appts. on Tues and Thurs. > > You may just want to speak with Aimee and see if she if you can fax her copies of your records and see if she can get him at the end of the day or just schedule with her for next week. They are VERY good at accommodating you quickly. As I'm sure is the case with TCC though - you will be shuffled around a lot to different tests and there will be long periods of waiting. That is how the big places usually go. > > something to note here - he takes the month of Aug. off so if you are even considering going to see him - I'd do it now. > > Call me if you need anything. I'm off for the summer and other than errands and the pool, I'm around alot right now. > > 252-256-3843 > > > > Tell to hang in there. We'll figure something out. > > you hang in there too mom. > > > > Sending lots of love your way!! > > - in NC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2009 Report Share Posted July 3, 2009 I drank a little wine when I couldn't eat or drink anything about 6 years ago, losing about half a pound a day. I was able to eat half a steak and baked potato. I was in Montana, and the beef is much better there, than the normal chain stores in CA, IMHO, so I was motivated also. Next day, I could not even drink water or eat jello. So the wine must have helped. Although it is controversial for teens to take anti-anxiety medication, it does seem to help many here, but no real testing has been presented. It is a consideration and also seems to help with spasms. And to the newer members... look back and see how carbonation has been helpful to many. I'll try to post a barium test I had where this was documented. Many discussions on that if you just type in carbonation in the group achalasia search box. It may feel a little painful to some, but I saw it push the barium down, and will post the test here soon. Sandy > > > > > > I am so very sorry to hear that you did not get better answers. > > > Here is the contact info for Dr. Luketich at UPMC. It should be about the same distance from you as TCC. I don't know how many myo's Dr. L does, I chose him because he does 150 -ectomies a year and that's what I needed. I think based on that, he knows his way around an esophagus. We have had a few members here getting myo's from him and I think they were all happy. > > > luketichjd @ upmc.edu (take out spaces) > > > their phone number is 412-647-7555 > > > His scheduling nurse is Aimee McBroom - she is great. Her email is mcbrooma @ upmc.edu > > > now of course this is a holiday weekend, so unfortunately, I don't know that I would count on hearing from him today. He did call me personally the day I emailed him but Fridays are surgical days for him. He's in his office/appts. on Tues and Thurs. > > > You may just want to speak with Aimee and see if she if you can fax her copies of your records and see if she can get him at the end of the day or just schedule with her for next week. They are VERY good at accommodating you quickly. As I'm sure is the case with TCC though - you will be shuffled around a lot to different tests and there will be long periods of waiting. That is how the big places usually go. > > > something to note here - he takes the month of Aug. off so if you are even considering going to see him - I'd do it now. > > > Call me if you need anything. I'm off for the summer and other than errands and the pool, I'm around alot right now. > > > 252-256-3843 > > > > > > Tell to hang in there. We'll figure something out. > > > you hang in there too mom. > > > > > > Sending lots of love your way!! > > > - in NC > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2009 Report Share Posted July 25, 2009 michelle- I'm just now catching up. thinking of and praying for you...angela Tonia my only thought on waiting is that school is going to start soon. Wouldn't it be better to try and deal with whatever now? I just hate to see you all have to deal with anything during the school year. did you ever hear back from Dr. L? I'm curious what he had to say. I'm going to see him tomorrow and then have my laser treatment on Fri. Since I'm out of town it will probably be Mon or so before I post again. Sounds like this guy at Vanderbilt has some great experience. Keep us posted. - in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Thank you ! I so appreciate all your support you just dont know how much. Hey did you say if you were on facebook or not? I did add some people but I dont think I got everyone from here.If imiseed anyone let me know so I can add ya > > I don't think I have any additional words of wisdom for you but I did just want you to know that I'm thinking a great big UGH!! for you. > I am SO sorry that this is happening. > Please tell that we are here for him and all sending best wishes, prayers and hugs. > > - in NC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Hi Tonia - I'm on facebook - I'll send you a friend request now. in NY _____ From: achalasia [mailto:achalasia ] On Behalf Of toniasdogsandi Sent: Thursday, August 06, 2009 1:39 PM achalasia Subject: Re: Tonia Thank you ! I so appreciate all your support you just dont know how much. Hey did you say if you were on facebook or not? I did add some people but I dont think I got everyone from here.If imiseed anyone let me know so I can add ya > > I don't think I have any additional words of wisdom for you but I did just want you to know that I'm thinking a great big UGH!! for you. > I am SO sorry that this is happening. > Please tell that we are here for him and all sending best wishes, prayers and hugs. > > - in NC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Im glad your my friend : ) -- In achalasia , " Brown " <tracylb@...> wrote: > > Hi Tonia - I'm on facebook - I'll send you a friend request now. > > in NY > > > > _____ > > From: achalasia [mailto:achalasia ] On Behalf > Of toniasdogsandi > Sent: Thursday, August 06, 2009 1:39 PM > achalasia > Subject: Re: Tonia > > > > > > Thank you ! I so appreciate all your support you just dont know how > much. > Hey did you say if you were on facebook or not? I did add some people but I > dont think I got everyone from here.If imiseed anyone let me know so I can > add ya > > > > > > I don't think I have any additional words of wisdom for you but I did just > want you to know that I'm thinking a great big UGH!! for you. > > I am SO sorry that this is happening. > > Please tell that we are here for him and all sending best wishes, > prayers and hugs. > > > > - in NC > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Hi Tonia, Sorry, I did not recieve email from you privately regarding mentoring. I sent you one but am unsure if you recieved it. Please send an email to vclark500@... if you are interested in pursuing a mentor. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2009 Report Share Posted October 26, 2009 Thanks ! Sorry to hear of your girls being sick.Hope they ar on the road to feeling better!!!!!!! As far as the 1-2 day thing I didnt by any means think that was possible but It sure sounded great . lol I have read where Dr L does these, his name comes up quit a bit. I did e mail him a while back and got no response.Things got back to normal somewhat and forgot to follow through. I am going to take to a few more DRs for other opinions but I do just wish this would end for him.Imagine being a kid and all through out your adult life still having to deal with this.Im not sure how ling you had A but it was a while right?Its just not fair!!!The spasms have been just horrible lately.He has already said he will do anything for them to stop.Hes really over this disease.We start counseling next week and maybe some form of pain mangement.I dont want to do that but he has to have something to help him with these spasms.I just think back to how DR Rice wont prescribe no pain meds or nothing to help with them as he says " your not gonna die from a spasm " I only wish he could feel one. I would like to hear about the surgery more if you would like to share. I can call you or you can e mail whichever would be easier.I think its something I do need to start to prepare myself for as I did with the open surgery. I am a person who needs details and no sugar coating.Let me know if you are willing to talk more about it.Heck what part of NC are you in,I will take a day trip .lol I went to land and met Vicki and and spent the night so I am dead serious girl. Thanks again for your support and always willing to help. Tonia > > Hey Tonia - been out of touch for awhile - the flu hit both of my daughters and I so I've been off line for over a week. > Anyway - I'd be cautious of anyone who tells you they can do an ectomy and be discharged in 1-2 days. without complications, I would have been discharged at 5 days and that felt awfully quick. I understand wanting the shortest possibly stay but you don't want to rush it either. > Dr. Luketich does a combo lap/thorascopic -ectomy. He didn't split my ribs but just went in through my back (I'm guessing a rib spreader was used). I have 4-5 lap incisions and a 3-4 inch incision through my ribs on my back but NO neck scar - that is a fairly recent change for him. > I know it all sounds so VERY dramatic, really, getting your E REMOVED (it still sounds dramatic to me and I've had it done!!) but honestly, don't lynch me now people - I could really see this as a much more common procedure and solution in our future. I feel SO MUCH BETTER and there are times I think I wish I had done it 10 years sooner. I make FAR fewer accommodations now than I used to and I have NO MORE SPASMS. In the beginning I had several family members really try to talk me out of it and I understand where they were coming from but unless you've had spasms... ask some day what he would give to never have a spasms again. Think, really think about how it would be to never watch him have one again. > I am in no way telling you what to do but if and when the time comes for him to take the next step, just understand that there is a huge rainbow at the end of the journey for all of you. At the risk of being totally corny - the clouds parted and the angels sang - I NO LONGER HAVE SPASMS!!! > Have you ever contacted Dr. L at UPMC? I would be remiss in not encouraging you to get his opinion - note that the article Notan linked for you - outcomes of MIE's?? had Dr. L's name on it. The man does 150 ectomies a year. Maybe he has another solution for that would put off the ectomy for a bit longer. If not, at least you would be comforted in knowing that the best of the best all agree; that's how I felt after both Dr. L and Dr. Rice both told me it was my best option. > How is doing now? Is he managing all right? How's he doing at school? > Keep us posted. We'll be here for you no matter what/when you decide. > > - in NC > achalasia free since Jan. '08 > Quote Link to comment Share on other sites More sharing options...
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