Guest guest Posted January 12, 2005 Report Share Posted January 12, 2005 hi Everyone I am appreciative of the group as well..just joined a week or so ago question has anyone ever tried a saline rinse with a very very minimal amount of hydrogen perodoxide? just curious tx ahierley <ahierley@...> wrote: I posted about a month ago, and after some good advice, have been getting a thorough workup thru National Jewish in Denver. I got some testing results yesterday, and found out my polyps have returned en masse, which is disappointing since polyp surgery was just last June. Having read Lori's post recently about how and whether to receive medical feedback was so timely - I was better able to deal with feeling like a "failure" and didn't feel alone.I am also disappointed that aspirin desens wasn't offered as an immediate post surgery option by my ENT. I'm going to do the denses next week, even tho it is much less than the premium time to do so (not willing to repeat surgery quite yet). National Jewish does it over two days. I'm nervous but willing.Also, I was one of those people trying to tough it out without steroids because of bad side effects, but have started on Pulmicort (went off Flovent) and am not having any problems. So I also weigh in on the "try a different flavor" of steroid, if that option is needed for other side effectors out there.And lastly, since I expect to become a daily aspirin user after not taking any aspirin or NSAIDS for several years, I went back to the links to re-read some material. A reminder to you regular aspirin eaters to beware signs of aspirin toxicity (different than allergy), noted at http://www.hss.edu/Conditions/Arthritis/Aspirin---Caution-Required, found in the library.I so appreciate having found this group - Alice__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2005 Report Share Posted January 12, 2005 yes, I have- ouch! Carol If you can tolerate it, it might be okay. I can't Carol Re: upcoming desens hi Everyone I am appreciative of the group as well..just joined a week or so ago question has anyone ever tried a saline rinse with a very very minimal amount of hydrogen perodoxide? just curious tx ahierley <ahierley@...> wrote: I posted about a month ago, and after some good advice, have been getting a thorough workup thru National Jewish in Denver. I got some testing results yesterday, and found out my polyps have returned en masse, which is disappointing since polyp surgery was just last June. Having read Lori's post recently about how and whether to receive medical feedback was so timely - I was better able to deal with feeling like a "failure" and didn't feel alone.I am also disappointed that aspirin desens wasn't offered as an immediate post surgery option by my ENT. I'm going to do the denses next week, even tho it is much less than the premium time to do so (not willing to repeat surgery quite yet). National Jewish does it over two days. I'm nervous but willing.Also, I was one of those people trying to tough it out without steroids because of bad side effects, but have started on Pulmicort (went off Flovent) and am not having any problems. So I also weigh in on the "try a different flavor" of steroid, if that option is needed for other side effectors out there.And lastly, since I expect to become a daily aspirin user after not taking any aspirin or NSAIDS for several years, I went back to the links to re-read some material. A reminder to you regular aspirin eaters to beware signs of aspirin toxicity (different than allergy), noted at http://www.hss.edu/Conditions/Arthritis/Aspirin---Caution-Required, found in the library.I so appreciate having found this group - Alice __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Alice, Thanks for checking in. I'm glad my post was helpful to you -- especially the not feeling alone part. This group has grown so much (almost 300 strong now!) and I'm really happy to see so many regular posters. You are not a failure for the polyps growing back. Damn those polyps anyway! The first time I had desensitization done I did not recently have the surgery -- it was about eight months afterwards. I hadn't heard about it until after the surgery. And I was able to avoid surgery for three years, which was one year more than the first two times between my surgery. Then I went off the aspirin for the second surgery and was desensitized again within a month. I was then on aspirin for four years, went off because of an unrelated health condition, and during that time avoided surgery for five years. That seemed like success to me. This time I chose not to get desensitized, partially because I had hoped to try to get pregnant, and I am still planning on doing so (getting pregnant, that is). I would consider desensitization again. Just be glad that you know about the desensitization now! I went with this illness for six years before I ever heard of it and I was so so sick during that time I almost died on more than one occasion (not just from taking aspirin or NSAIDS either, just the asthma being so bad!) and was on steroids almost all the time. It was awful. I had literally what I feel is a rebirth in August of 1995 and got my life back. It was like a miracle for me. I hope it is just as effective for you. As long as you are in good hands and they have experience with this, I think you will be fine! Let us know how it goes. Lori in NY P.S. I always recommend to everyone -- absolutely always take your aspirin WITH FOOD and take some type of coated preparation. I took Ascriptin. It's more expensive but I would swear by it. And you can buy large quantities on the Internet for cheaper I think. Just my personal opinion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 Lori, Thanks for the encouraging words - makes me feel more optimistic. I guess its unavoidable that medical practices that are growing and changing as fast as a nasal polyp (well, not quite) means our opportunities will change and grow as time passes. It is, of course, of utmost help that a group like this helps pass the word to push the rate of progress along by sharing info and experiences. I'll look for the Ascriptin, and meditate on the good health of this group while I'm desensing... Signed, Recipient-of-second-hand-smoke-as-child-allergy-collector, Alice > > Alice, > > Thanks for checking in. I'm glad my post was helpful to you -- > especially the not feeling alone part. This group has grown so much > (almost 300 strong now!) and I'm really happy to see so many regular > posters. You are not a failure for the polyps growing back. Damn > those polyps anyway! > > The first time I had desensitization done I did not recently have > the surgery -- it was about eight months afterwards. I hadn't heard > about it until after the surgery. And I was able to avoid surgery > for three years, which was one year more than the first two times > between my surgery. Then I went off the aspirin for the second > surgery and was desensitized again within a month. I was then on > aspirin for four years, went off because of an unrelated health > condition, and during that time avoided surgery for five years. > That seemed like success to me. > > This time I chose not to get desensitized, partially because I had > hoped to try to get pregnant, and I am still planning on doing so > (getting pregnant, that is). I would consider desensitization > again. > > Just be glad that you know about the desensitization now! I went > with this illness for six years before I ever heard of it and I was > so so sick during that time I almost died on more than one occasion > (not just from taking aspirin or NSAIDS either, just the asthma > being so bad!) and was on steroids almost all the time. It was > awful. I had literally what I feel is a rebirth in August of 1995 > and got my life back. It was like a miracle for me. I hope it is > just as effective for you. > > As long as you are in good hands and they have experience with this, > I think you will be fine! Let us know how it goes. > > Lori in NY > > P.S. I always recommend to everyone -- absolutely always take your > aspirin WITH FOOD and take some type of coated preparation. I took > Ascriptin. It's more expensive but I would swear by it. And you > can buy large quantities on the Internet for cheaper I think. Just > my personal opinion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 > > > Signed, > Recipient-of-second-hand-smoke-as-child-allergy-collector, > Alice > LOL! Apparently me too. LOL! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 I completed my aspirn desens yesterday at National Jewish Hospital in Denver. They try hard to complete the process in two days, which explains why I was having an anaphylactic reaction to 85 mgs on Thursday morning, and walking out of the place on Friday afternoon having successfully ingested 650 mgs. What a ride! My goal was to try to avoid a big steroid dose because I've had bad side effects, and I was successful. Of course, trying to negotiate with doctors who really wanted to use steroids, while I was breathing oxygen- helium gas sounding like a Munchkin - it wasn't the high-point of my moments as a self advocate, or maybe it was... But, epi shots, IV benedryl, albuteral treatments, and the breathing mask seemed to bring me around after awhile, so, it was okay. Subsequent dose brought a mild reaction, and last few doses brought no reaction. I feel like a lab rat, and like I've been on a big adventure, grateful to come out the other side. Taking aspirin this morning felt like breaking a big taboo I've been living with. I'm sure many of you can relate. Cheers, and onward to whatever the next chapter may look like. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Alice, I will be interested to know what is your daily maintenance dose, and also how you feel as the weeks and months progress. -- Ken West Check the library . . . samters/links > From: " ahierley " <ahierley@...> > Reply-samters > Date: Sun, 23 Jan 2005 00:06:24 -0000 > samters > Subject: Re: upcoming desens > > > > I completed my aspirn desens yesterday at National Jewish Hospital > in Denver. They try hard to complete the process in two days, which > explains why I was having an anaphylactic reaction to 85 mgs on > Thursday morning, and walking out of the place on Friday afternoon > having successfully ingested 650 mgs. What a ride! My goal was to > try to avoid a big steroid dose because I've had bad side effects, > and I was successful. Of course, trying to negotiate with doctors > who really wanted to use steroids, while I was breathing oxygen- > helium gas sounding like a Munchkin - it wasn't the high-point of my > moments as a self advocate, or maybe it was... But, epi shots, IV > benedryl, albuteral treatments, and the breathing mask seemed to > bring me around after awhile, so, it was okay. Subsequent dose > brought a mild reaction, and last few doses brought no reaction. > > I feel like a lab rat, and like I've been on a big adventure, > grateful to come out the other side. > > Taking aspirin this morning felt like breaking a big taboo I've been > living with. > > I'm sure many of you can relate. > > Cheers, and onward to whatever the next chapter may look like. > > Alice > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Congratulations, Alice, for crossing the threshold. That must have been tough - with EPI shots and IV benedryl, etc.Why the oxygen with helium? I've never heard of that treatment (except in deep diving). I hope you have a good experience. It may take some time. Three months after my desens I was wondering if it did any good. After a year, I'm 100% convinced that it has really changed me. It's almost a miracle. I hope you have positive results, too. Jim (Tx) --- ahierley <ahierley@...> wrote: > > > I completed my aspirn desens yesterday at National Jewish Hospital > in Denver. They try hard to complete the process in two days, which > explains why I was having an anaphylactic reaction to 85 mgs on > Thursday morning, and walking out of the place on Friday afternoon > having successfully ingested 650 mgs. What a ride! My goal was to > try to avoid a big steroid dose because I've had bad side effects, > and I was successful. Of course, trying to negotiate with doctors > who really wanted to use steroids, while I was breathing oxygen- > helium gas sounding like a Munchkin - it wasn't the high-point of my > moments as a self advocate, or maybe it was... But, epi shots, IV > benedryl, albuteral treatments, and the breathing mask seemed to > bring me around after awhile, so, it was okay. Subsequent dose > brought a mild reaction, and last few doses brought no reaction. > > I feel like a lab rat, and like I've been on a big adventure, > grateful to come out the other side. > > Taking aspirin this morning felt like breaking a big taboo I've been > living with. > > I'm sure many of you can relate. > > Cheers, and onward to whatever the next chapter may look like. > > Alice > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 > Alice, I will be interested to know what is your daily maintenance dose, and > also how you feel as the weeks and months progress. 650 mgs twice daily for a year, if possible, then down to 325 twice daily. I'll keep you posted... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Thanks - I've got my fingers crossed. Could be that my oxygen levels were down during the low peak flow period (throat tight, etc.) and they were just doing it to buy time. They said it would help relax the upper throat if that's where the swelling was occurring, which is either true, or was what they were saying to keep me from panicking about low oxygens. Personally, I found it hard to panic with all that benedryl running thru me - I left that part up to them. Alice -- In samters , Jim Brown <jim747@s...> wrote: > Congratulations, Alice, for crossing the threshold. That must have been tough - with EPI shots and > IV benedryl, etc.Why the oxygen with helium? I've never heard of that treatment (except in deep > diving). > > I hope you have a good experience. It may take some time. Three months after my desens I was > wondering if it did any good. After a year, I'm 100% convinced that it has really changed me. It's > almost a miracle. > > I hope you have positive results, too. > > Jim (Tx) > >> > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Alice, Good to see that you came through it with flying colors. ) I am still petrified to try it. Had thought of going out to Scripps if I did decide to undergo the desense but my allergist did his internship at Nat. Jewish and that is where he would prefer me to go. Said that he wanted me under Dr. Sally Wenzel and due to Dr. son not being funded anymore, I am not sure how they are going to the desense there now. Would appreciate any information you can give me about National Jewish. My insurance will not pay for desense outside New Mexico. My allergist said that even if I challenged my insurance carrier, they would say something like, we have doctors who can do this...no need for you to go out of state. He has tried it before with a couple of his patients that needed better and more up to date care (not associated with Samter's) and he has never been successful at getting them to let anyone go out of state to other doctors. I'd definitely be taking my life in my own hands if I let them do it as they know nothing about it according to my allergist. You can e mail me privately. I did find out from Nat. Jewish that the first appointment runs around 7000.00 and takes about a week. That doesn't even include treatments. Just the initial consultation and tests. Don't think I can afford that...have no idea what desense would run but it is probably very expensive. Have heard on this list that there is a doctor in Los Alamos who does the desense but I don't remember who it was. And if he isn't my network of doctors, my insurance wouldn't pay for him either. ( Thanks, " ahierley " <ahierley@c...> wrote: > I completed my aspirn desens yesterday at National Jewish Hospital > in Denver. They try hard to complete the process in two days, which > explains why I was having an anaphylactic reaction to 85 mgs on > Thursday morning, and walking out of the place on Friday afternoon > having successfully ingested 650 mgs. What a ride! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 , The doctor in Los Alamos is Dr. Sussman. He also works in Santa Fe. He just started a new practice and I forgot the name. His old practice was with Dr Hossinger. They are listed. It cost me $280.00. He is very cautious. He has an option for high risk patients that is slower and in the hospital, just in case. Call him! Pam > Have heard on this list that there is a doctor in Los Alamos who does > the desense but I don't remember who it was. And if he isn't my > network of doctors, my insurance wouldn't pay for him either. ( > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 , Just my two cents but if you really want the desensitization done I say challenge your insurance anyway. The more people challenge it they may have to give in eventually. And if they say they have doctors in state who do it, why not ask them for a list and call all those doctors and check them out, ask how many patients they have done the desensitization procedure on, what their protocol is, where it is done, etc. It will be time-consuming but how can it hurt? Also once you get the names of those doctors you can run them by this list and see if anyone knows of them. When I first heard of the Scripps program, a doctor here in New York told me they would never accept me from out of state so I should not even bother calling. That was in January of 1995. In August of 1995 I got desensitized for the first time at Scripps. So if I had listened to that doctor I might be in much worse shape than I am in today -- honestly I think I might be dead if I hadn't gotten desensitized. If you need help making calls I'm sure friends or family or even people here (hey, I've got free long distance and some time!) would help you call all the doctors whose names you get. Dr. Sally Wenzel. Why does that name sound familiar? Where is she? I am a bit confused by your post -- are you saying because Dr. son is not funded that National Jewish would not do desensitization anymore? I guess I must be misunderstanding the train of thought but I'm a bit foggy on what you mean. I understand the fear and the red tape with the insurance, but if you really want to do this I am sure a way can be found. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Is there a thread that tells the steps in decens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Hi , I think my memory is accurate. The process took 6 hours. I reacted early and he sent me home at 81mg (a baby aspirin) to finish it myself. I learned that the hump to get over is your first reaction. Once you clear the symptoms from that one the subsequent steps are uneventfull. I was worried about the cost because I didn't discuss it before hand. I was so thrilled to be offered the service that it seemed priceless at any cost. The receptionist said they would charge me by the hour and I guess they didn't charge me for the time I was waiting around to see if I might react. (30 minutes between each dose, for me, for a more high risk protocol they listed 90 minutes). I don't have problems with most alchohol. Occationally when I'm especially sensitive, I might get a little wheezy with some wines. Most times I am fine. Pam, now in MD (Eastern Shore) > hi > > I'm just jumping in..only $280 for desensitization...I can't believe it > > thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Ken West Check the library . . . samters/links From: hbk207@... Reply-samters Date: Tue, 25 Jan 2005 22:09:45 EST samters Subject: Re: Re: upcoming desens Is there a thread that tells the steps in decens Quote Link to comment Share on other sites More sharing options...
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