Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Lynda, My heart goes out to you. I know pretty much how you feel. Our son was finally diagnosed last year at age 5 w/ PDD in the Autism Spectrum. We had previously been told they weren't sure whether it was Autism or ADHD. We had hoped that it was ADHD, as it seems less serious, and easier to treat, but were also glad to finally know what it was so that we could start looking into the proper treatment options. The good news is that there is good reason to be hopeful that your son will be exhibiting few of his current autistic behaviors by adulthood. There are a lot of very helpful bio-chemical treatments, and speech and occupational therapies available to that end. Though you may be off to a late start, it's never too late, and your son's diagnosis as high-functioning is encouraging. This email group has proved to be an invaluable resource of information and encouragement. I would also encourage you to go to www.featnt.org and get their Introduction to Autism for new parents, for starters Also, you should buy some books on the subject. Search for " Autism " at Amazon.com to find a slew of books on the subject and read reviews from parents to gauge how useful the book may be for you. Then go buy whatever you can find at Half-Priced Books that looks helpful, as most of those are extremely cheap. One book in particular that I highly recommend (and many others will vouch for this as well) is Biological Treatments for Autism and PDD by Dr. Bernard Shaw. It's not the easiest read in the world, but it's a great start towards understanding some of the bio-chemical factors involved in Autism. Blessed be, > My 12 yr old son was just diagnosed with " high functioning autism. " He is > in the 7th grade and has previously been wrongly diagnosed as ADHD. > However, further studies have determined that really doesn't " fit " his > symptoms (although the low dose Ritalin does help somewhat). I would love > the opportunity to visit with you and share resources, ideas, thoughts, etc. > > > > I am trying very hard to have a positive outlook on this ... although it is > a struggle (as I'm sure you all well know). I do believe that now that we > finally know what is wrong, we can better know how to help him. > > > > Thank you for allowing me to join your group and to share ... > > > > ~Lynda > > Santa Fe, TX > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 My son also performed a lot better in school on a low dose of Ritalin. Once we started the GFCF diet and gave him other nutritional supplements under a DAN doctor's supervision, he was able to stop taking the Ritalin. He's actually doing better without it. He has been diagnosed with PDD-NOS. Glen Santos just diagnosed My 12 yr old son was just diagnosed with " high functioning autism. " He is in the 7th grade and has previously been wrongly diagnosed as ADHD. However, further studies have determined that really doesn't " fit " his symptoms (although the low dose Ritalin does help somewhat). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 My son also performed a lot better in school on a low dose of Ritalin. Once we started the GFCF diet and gave him other nutritional supplements under a DAN doctor's supervision, he was able to stop taking the Ritalin. He's actually doing better without it. He has been diagnosed with PDD-NOS. Glen Santos just diagnosed My 12 yr old son was just diagnosed with " high functioning autism. " He is in the 7th grade and has previously been wrongly diagnosed as ADHD. However, further studies have determined that really doesn't " fit " his symptoms (although the low dose Ritalin does help somewhat). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 I am sorry. Yes the news can be difficult . Hang in there. There is support and help. Where is Clute, TX? Maybe we can find someone near you that can give you a call. Liz  , TX suburb of Dallas. On 3/31/04 10:44 AM, " alishasmom2001 " <alishasmom2001@...> wrote: > Just 2 days ago my perfect daughter, my miracle baby, was diagnosed > with PDD-NOS. We knew something was wrong. We never did believe > that " she'll talk when she's ready. " While it feels good to have a > name, it is a blow to us. I'm not sure what to think, what to hope > for, what to do. It is a pain like I have never known. I feel like > the hope and promise of the future is gone. In the meantime, I am > trying to soak it all in and learn as much as I can. Alisha is 2 > years and 9 months. I would like to hear from anyone who can share > with me information, experience or support. We live in Clute, TX. > > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > SeekingJoyinDisability - Prayer support for those touched by Disability: > SeekingJoyinDisability/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi, I live in Alvin and am not to far from clute. You need to contact BACH ECI 130 Hospital Drive Angleton 77515, Texas Ph # 979-849-2447 or 877-714-1766. These people are wonderful and very understanding. They also will give your child excellent services. If you want further information you can e-mail me privately.At one time there was an ASA chapter in Lake but I believe that they are inactive. The closest one to us now is the one in Clear Lake, which I know might as well be in Dallas. If you have any questions are need further information please contact me privately and I will do as much as I can to help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 , I knew something was wrong long ago. I searched out BACH-ECI over a year ago for the speech delay. They are wonderful and Alisha has made progress. It is frustrating that I have been the one to instigate everything. Friends, family, doctors and everyone were happy to say that she would talk when she was ready and left it at that. I searched out BACH-ECI. I searched out the developmental pediatrics clinic. Having a name for this is both a relief and a devastation. I would love to talk with you but for now, I'm off to bed. > > Hi, > I live in Alvin and am not to far from clute. You need to contact BACH ECI > 130 Hospital Drive Angleton 77515, Texas Ph # 979-849-2447 or 877- 714-1766. > These people are wonderful and very understanding. They also will give your > child excellent services. If you want further information you can e-mail me > privately.At one time there was an ASA chapter in Lake but I believe > that they are inactive. The closest one to us now is the one in Clear Lake, > which I know might as well be in Dallas. If you have any questions are need > further information please contact me privately and I will do as much as I > can to help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 , I knew something was wrong long ago. I searched out BACH-ECI over a year ago for the speech delay. They are wonderful and Alisha has made progress. It is frustrating that I have been the one to instigate everything. Friends, family, doctors and everyone were happy to say that she would talk when she was ready and left it at that. I searched out BACH-ECI. I searched out the developmental pediatrics clinic. Having a name for this is both a relief and a devastation. I would love to talk with you but for now, I'm off to bed. > > Hi, > I live in Alvin and am not to far from clute. You need to contact BACH ECI > 130 Hospital Drive Angleton 77515, Texas Ph # 979-849-2447 or 877- 714-1766. > These people are wonderful and very understanding. They also will give your > child excellent services. If you want further information you can e-mail me > privately.At one time there was an ASA chapter in Lake but I believe > that they are inactive. The closest one to us now is the one in Clear Lake, > which I know might as well be in Dallas. If you have any questions are need > further information please contact me privately and I will do as much as I > can to help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Liz, Thank you. We are far apart--I am south of Houston, very close to the Gulf Coast but I am willing to network wherever I need to. Some moments I am strong and hopeful and other moments I am sobbing. Alisha is my miracle baby and I will do anything for her. > > > Just 2 days ago my perfect daughter, my miracle baby, was diagnosed > > with PDD-NOS. We knew something was wrong. We never did believe > > that " she'll talk when she's ready. " While it feels good to have a > > name, it is a blow to us. I'm not sure what to think, what to hope > > for, what to do. It is a pain like I have never known. I feel like > > the hope and promise of the future is gone. In the meantime, I am > > trying to soak it all in and learn as much as I can. Alisha is 2 > > years and 9 months. I would like to hear from anyone who can share > > with me information, experience or support. We live in Clute, TX. > > > > > > > > Unlocking Autism > > www.UnlockingAutism.org > > > > Autism-Awareness-Action > > Worldwide internet group for parents who have a > > child with AUTISM. > > > > SeekingJoyinDisability - Prayer support for those touched by Disability: > > SeekingJoyinDisability/ > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 I am also from South Texas. I'm in Pearland. Hope to meet up with some mothers and share experiences. Ally > > > > > Just 2 days ago my perfect daughter, my miracle baby, was > diagnosed > > > with PDD-NOS. We knew something was wrong. We never did believe > > > that " she'll talk when she's ready. " While it feels good to > have a > > > name, it is a blow to us. I'm not sure what to think, what to > hope > > > for, what to do. It is a pain like I have never known. I feel > like > > > the hope and promise of the future is gone. In the meantime, I > am > > > trying to soak it all in and learn as much as I can. Alisha is 2 > > > years and 9 months. I would like to hear from anyone who can > share > > > with me information, experience or support. We live in Clute, > TX. > > > > > > > > > > > > Unlocking Autism > > > www.UnlockingAutism.org > > > > > > Autism-Awareness-Action > > > Worldwide internet group for parents who have a > > > child with AUTISM. > > > > > > SeekingJoyinDisability - Prayer support for those touched by > Disability: > > > SeekingJoyinDisability/ > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi Alisha's Mom, You didn't sign the email so I didn't know how else to address you. You have come to the right place! Many of us didn't have this support option when our kids (grandkids) were diagnosed. There is more hope for us now than then. My grandson who is soon to be 8 is under the treatment of a doctor in Austin. We are seeing progress (healing?) since he started in January. I assume that the earlier this treatment is started the better like all other interventions with autism. If you are interested please email me at ckcarlson@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi Alisha's Mom, You didn't sign the email so I didn't know how else to address you. You have come to the right place! Many of us didn't have this support option when our kids (grandkids) were diagnosed. There is more hope for us now than then. My grandson who is soon to be 8 is under the treatment of a doctor in Austin. We are seeing progress (healing?) since he started in January. I assume that the earlier this treatment is started the better like all other interventions with autism. If you are interested please email me at ckcarlson@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Oops! My name is . I am interested but it will just take time for me to sift through it all and respond to everyone's kindness! > Hi Alisha's Mom, > > You didn't sign the email so I didn't know how else to address you. You have come to the right place! Many of us didn't have this support option when our kids (grandkids) were diagnosed. There is more hope for us now than then. My grandson who is soon to be 8 is under the treatment of a doctor in Austin. We are seeing progress (healing?) since he started in January. I assume that the earlier this treatment is started the better like all other interventions with autism. If you are interested please email me at ckcarlson@e... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Oops! My name is . I am interested but it will just take time for me to sift through it all and respond to everyone's kindness! > Hi Alisha's Mom, > > You didn't sign the email so I didn't know how else to address you. You have come to the right place! Many of us didn't have this support option when our kids (grandkids) were diagnosed. There is more hope for us now than then. My grandson who is soon to be 8 is under the treatment of a doctor in Austin. We are seeing progress (healing?) since he started in January. I assume that the earlier this treatment is started the better like all other interventions with autism. If you are interested please email me at ckcarlson@e... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Ally, I too would like to get together with other parents. I'm in Clute so you are not too terribly far away. > > > > > > > Just 2 days ago my perfect daughter, my miracle baby, was > > diagnosed > > > > with PDD-NOS. We knew something was wrong. We never did > believe > > > > that " she'll talk when she's ready. " While it feels good to > > have a > > > > name, it is a blow to us. I'm not sure what to think, what to > > hope > > > > for, what to do. It is a pain like I have never known. I > feel > > like > > > > the hope and promise of the future is gone. In the meantime, > I > > am > > > > trying to soak it all in and learn as much as I can. Alisha > is 2 > > > > years and 9 months. I would like to hear from anyone who can > > share > > > > with me information, experience or support. We live in Clute, > > TX. > > > > > > > > > > > > > > > > Unlocking Autism > > > > www.UnlockingAutism.org > > > > > > > > Autism-Awareness-Action > > > > Worldwide internet group for parents who have a > > > > child with AUTISM. > > > > > > > > SeekingJoyinDisability - Prayer support for those touched by > > Disability: > > > > SeekingJoyinDisability/ > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 > > > > > > > > > Just 2 days ago my perfect daughter, my miracle baby, was > > > diagnosed > > > > > with PDD-NOS. We knew something was wrong. We never did > > believe > > > > > that " she'll talk when she's ready. " While it feels good to > > > have a > > > > > name, it is a blow to us. I'm not sure what to think, what > to > > > hope > > > > > for, what to do. It is a pain like I have never known. I > > feel > > > like > > > > > the hope and promise of the future is gone. In the > meantime, > > I > > > am > > > > > trying to soak it all in and learn as much as I can. Alisha > > is 2 > > > > > years and 9 months. I would like to hear from anyone who > can > > > share > > > > > with me information, experience or support. We live in > Clute, > > > TX. > > > > > > > > > > > > > > > > > > > > Unlocking Autism > > > > > www.UnlockingAutism.org > > > > > > > > > > Autism-Awareness-Action > > > > > Worldwide internet group for parents who have a > > > > > child with AUTISM. > > > > > > > > > > SeekingJoyinDisability - Prayer support for those touched by > > > Disability: > > > > > SeekingJoyinDisability/ > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 There is no silver bullet here at the Samters group. You should look into the FILES section for some fundamental information. If you're intersted in desensitization, then you can specifically read samters/files/Desensitization-v3.html Also, look at the LINKS section, and browse around the posting archives, searching for keywords of specific interest to you. PS -- you will find a lot of evidence here that recurrence of polyps after surgery is MUCH quicker with Samterites than with the population at large. Have fun. regards, Ken West > From: " kmirrione " <kmirrione@...> > Reply-samters > Date: Tue, 27 Apr 2004 16:54:43 -0000 > samters > Subject: Just diagnosed > > Hi, I just was diagnosed with Samters. I am scheduled for my first > nasal surgery to have polyps removed on May 21st. > How does one typically live with this? Constant prednisone > treatments and nasal surgeries? My doctor mentioned that there was a > study for aspirin desens, but he was not sure if that study was still > going on. He had not sent anyone there in a couple of years. Does > anyone have any info on this? What types of symptoms does one have > to have in order to get in on this study? > Thanks, e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 I think if you are just having your first polypectomy- after it is completed- consider the ASA desens at Scripps- it was sort of like a miracle for me. CarolKen West <kenwest@...> wrote: There is no silver bullet here at the Samters group.You should look into the FILES section for some fundamental information.If you're intersted in desensitization, then you can specifically readsamters/files/Desensitization-v3.htmlAlso, look at the LINKS section, and browse around the posting archives,searching for keywords of specific interest to you.PS -- you will find a lot of evidence here that recurrence of polyps aftersurgery is MUCH quicker with Samterites than with the population at large.Have fun.regards,Ken West > From: "kmirrione" <kmirrione@...>> Reply-samters > Date: Tue, 27 Apr 2004 16:54:43 -0000> To: samters > Subject: Just diagnosed> > Hi, I just was diagnosed with Samters. I am scheduled for my first> nasal surgery to have polyps removed on May 21st.> How does one typically live with this? Constant prednisone> treatments and nasal surgeries? My doctor mentioned that there was a> study for aspirin desens, but he was not sure if that study was still> going on. He had not sent anyone there in a couple of years. Does> anyone have any info on this? What types of symptoms does one have> to have in order to get in on this study?> Thanks, e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Thanks for all the info! My doctor is going to look into Scripps. Keeping my fingers crossed.... :-) There is no silver bullet here at the Samters group. > > You should look into the FILES section for some fundamental information. > If you're intersted in desensitization, then you can specifically read > samters/files/Desensitization- v3.html > > Also, look at the LINKS section, and browse around the posting archives, > searching for keywords of specific interest to you. > > PS -- you will find a lot of evidence here that recurrence of polyps after > surgery is MUCH quicker with Samterites than with the population at large. > > Have fun. > > regards, > Ken West > > > From: " kmirrione " <kmirrione@y...> > > Reply-samters > > Date: Tue, 27 Apr 2004 16:54:43 -0000 > > samters > > Subject: Just diagnosed > > > > Hi, I just was diagnosed with Samters. I am scheduled for my first > > nasal surgery to have polyps removed on May 21st. > > How does one typically live with this? Constant prednisone > > treatments and nasal surgeries? My doctor mentioned that there was a > > study for aspirin desens, but he was not sure if that study was still > > going on. He had not sent anyone there in a couple of years. Does > > anyone have any info on this? What types of symptoms does one have > > to have in order to get in on this study? > > Thanks, e > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Thanks for all the info! My doctor is going to look into Scripps. Keeping my fingers crossed.... :-) There is no silver bullet here at the Samters group. > > You should look into the FILES section for some fundamental information. > If you're intersted in desensitization, then you can specifically read > samters/files/Desensitization- v3.html > > Also, look at the LINKS section, and browse around the posting archives, > searching for keywords of specific interest to you. > > PS -- you will find a lot of evidence here that recurrence of polyps after > surgery is MUCH quicker with Samterites than with the population at large. > > Have fun. > > regards, > Ken West > > > From: " kmirrione " <kmirrione@y...> > > Reply-samters > > Date: Tue, 27 Apr 2004 16:54:43 -0000 > > samters > > Subject: Just diagnosed > > > > Hi, I just was diagnosed with Samters. I am scheduled for my first > > nasal surgery to have polyps removed on May 21st. > > How does one typically live with this? Constant prednisone > > treatments and nasal surgeries? My doctor mentioned that there was a > > study for aspirin desens, but he was not sure if that study was still > > going on. He had not sent anyone there in a couple of years. Does > > anyone have any info on this? What types of symptoms does one have > > to have in order to get in on this study? > > Thanks, e > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 Hi e, sorry to hear about your diagnosis. I hvae been living with Samters symptoms for at least 15 years and have had ups and downs. I highly recommend the leukotriene antagonists such as Singulair, especially after surgery, to help control the polyps. I personally think prednisone is the worst way to go with this illness, and I only take it if I absolutely have to. Not everyone would agree with that. Years ago I was on steroids very frequently and found it did nothing for my overall health in the long term. It just made me worse overall. I thought there would be no way I could ever be off of them, I was so sick all the time and in the hospital frequently, but I did find a way. I did the aspirin desensitization twice and found it bought me seven years of time in which I could make other changes and other medications were discovered. ANd, yes, you can still be desensitized to aspirin at Scripps among other places. Currently I take Advair which I love which almost always completely controls my asthma, Singulair 30 milligrams a day and Nasonex spray. My symptoms are pretty well-controlled on those medications. I also have made some dietary changes, among them trying to eat a lot less fat, particularly animal fat, because it is possible that fat can help contribute to the formation of leukotrienes, which cause some of our symptoms. I also have tried to exercise more as I think that helps, and if nothing else makes me stronger for the times when I do have bad flare-ups. Where are you located? I think it's important to find a specialist who has dealt with a lot of patients with Samters if at all possible, it sounds like your doctor may have. Good luck to you Lori > Hi, I just was diagnosed with Samters. I am scheduled for my first > nasal surgery to have polyps removed on May 21st. > How does one typically live with this? Constant prednisone > treatments and nasal surgeries? My doctor mentioned that there was a > study for aspirin desens, but he was not sure if that study was still > going on. He had not sent anyone there in a couple of years. Does > anyone have any info on this? What types of symptoms does one have > to have in order to get in on this study? > Thanks, e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 YOu can call Scripps yourself as well ... I'm sure someone here has the number. Lori There is no silver bullet here at the > Samters group. > > > > You should look into the FILES section for some fundamental > information. > > If you're intersted in desensitization, then you can specifically > read > > samters/files/Desensitization- > v3.html > > > > Also, look at the LINKS section, and browse around the posting > archives, > > searching for keywords of specific interest to you. > > > > PS -- you will find a lot of evidence here that recurrence of > polyps after > > surgery is MUCH quicker with Samterites than with the population at > large. > > > > Have fun. > > > > regards, > > Ken West > > > > > From: " kmirrione " <kmirrione@y...> > > > Reply-samters > > > Date: Tue, 27 Apr 2004 16:54:43 -0000 > > > samters > > > Subject: Just diagnosed > > > > > > Hi, I just was diagnosed with Samters. I am scheduled for my > first > > > nasal surgery to have polyps removed on May 21st. > > > How does one typically live with this? Constant prednisone > > > treatments and nasal surgeries? My doctor mentioned that there > was a > > > study for aspirin desens, but he was not sure if that study was > still > > > going on. He had not sent anyone there in a couple of years. > Does > > > anyone have any info on this? What types of symptoms does one > have > > > to have in order to get in on this study? > > > Thanks, e > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Dear e, Welcome to our group. That is great that you have found a doctor who knows a lot about Samters! You could also try the Feingold diet or NAET treatments both of which have helped me a lot. Maybe you could try them and if they don't work then go to the Scrips clinic. You can find out more about them at www.feingold.org or www.naet.com. The Feingold diet costs very little and can do wonders. If you find you find you miss some foods too much or you have additional allergies other than what the Feingold diet avoids you can get NAET treatments to cure them. It really works! I'm glad you didn't need the surgery. I believe that if you follow the Feingold diet your pollyps will decrease or go away. I haven't had pollyp surgery since 1990 and I believe it is the diet that has made the difference. I live in Clayton which is close to Walnut Creek and Concord so I'm about 1 1/2 hours away. Maybe we could get together sometime! Re: Just diagnosed << File: ATT00006.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 I am in the northern California group too- I live in Chico! Carol RE: Re: Just diagnosed Dear e,Welcome to our group. That is great that you have found a doctor who knows a lot about Samters!You could also try the Feingold diet or NAET treatments both of which have helped me a lot. Maybe you could try them and if they don't work then go to the Scrips clinic. You can find out more about them at www.feingold.org or www.naet.com. The Feingold diet costs very little and can do wonders. If you find you find you miss some foods too much or you have additional allergies other than what the Feingold diet avoids you can get NAET treatments to cure them. It really works! I'm glad you didn't need the surgery. I believe that if you follow the Feingold diet your pollyps will decrease or go away. I haven't had pollyp surgery since 1990 and I believe it is the diet that has made the difference.I live in Clayton which is close to Walnut Creek and Concord so I'm about 1 1/2 hours away. Maybe we could get together sometime!-----Original Message-----From: kmirrione [sMTP:kmirrione@...]Sent: Tuesday, May 11, 2004 12:52 PM samters Subject: Re: Just diagnosed<< File: ATT00006.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Just diagnosed. If you are in the San jose area and you need a specialist - how about Dr Winston Vaughan at Stanford- He is head of the sinus center and has taken care of my sinus disease from hell for about 7 years. I think I was about his first patient. I think he is truly wonderful. Write me if you need to know more. Carol Re: Just diagnosed Thank you for sharing your experience. My surgery has been postponed as the polyps decreased in size dramatically with the last prednisone treatment. However, I do realize that this is most likely temporary. I am following up with the ENT doctor in a few weeks. I am located in the San area and my Allergist seems to have a lot of info on this condition. I just had my Lung Function Test results sent to him and he is looking into the study in San Diego. I am concerned though because I want to have children in the next couple of years. I do not know if this will disqualify me from the study. I too am on Advair and since I started taking it have had total control of my asthma. I have not used my rescue inhaler at all since I started taking Advair. > > Hi, I just was diagnosed with Samters. I am scheduled for my first > > nasal surgery to have polyps removed on May 21st. > > How does one typically live with this? Constant prednisone > > treatments and nasal surgeries? My doctor mentioned that there was > a > > study for aspirin desens, but he was not sure if that study was > still > > going on. He had not sent anyone there in a couple of years. Does > > anyone have any info on this? What types of symptoms does one have > > to have in order to get in on this study?> > Thanks, e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Hielo Bonnie, welcome There's not mush information on ctoma numbers but it's sometimes said to occur in roughly one per 20,000 of the population. That means there are plenty of people with the disease but not common enough that you'd automatically know anyone else with it. Ctoma gets worse the longer you have it but isn't a very rapidly developping do disease. So unless you have very advanced symptoms (face paralysis and vertigo etc), emergency surgery isn't esssential. In most cases, waiting a month or two won't make any real difference. Your ear will heal fafter the operation but no-one but the doctor can say what your hearing might be like. It would depend on how much damage has already been done. Ctoma usually destroys some or all of the middle ear bones that conduct sound to the inner ear, the infections that often accompany ctoma can spread the inner ear itself. If you're are still heaing with your right ear at present, you may find that you hear less well after surgery. The ctoma itself can sometimes act as a sound bridge in cases where the ear bones are damaged so removing it can make the hearing worse. Also , if the ear bones are still present but diseased , they may need to removed during surgery. A lot of people undergo hearing resonstruction (fitting a middle ear prosthesis to replace the bones) a year or two down the line once it's been established that the ctoma hasn't returned. Cat scans aren't definitive but should give the doctor an indication of how awidespread the condition is. .Good luck Phil hello,my name is bonnie,i am 25 and been diagnosed a week ago with acholesteatoma in my right ear(after a check up about a largeperferation in my left ear),i had a cat scan yesterday and have towait 3 more days to go over my results with the ear specialist.Sincethe diagnosis i have been searching for info on this disease.I am veryreleaved to have found this site!!!its comforting to know i am not theonly one going through all this and feel very lucky/privleged thatalthough i have a very low income, in australia we have a publichealth system,which means i can have surgery immediatly,without thefurther stress of finance.There are a couple of questions you might be able to help me withhow commen is the disease?is it commen for doctors to sugest immediate surgery?will my right ear recover from surgery,will i be able to hear with myright ear?thanks,bon. Quote Link to comment Share on other sites More sharing options...
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