.Comment 001
My daughter, age 37 in Dallas,Texas, and 4 1/2 months pregnant with her third child, has just been diagnosed with idiopathic tracheal stenosis. She has been told that this is extremely rare and is being cared for by a thoracic surgeon, Dr. Faust and a Dr. Weinstein(first names I do not have). They intend to dialate the treachea at intervals until after delivery when they intend to send her to a hospital in Boston . Pleas form me as to anything you know to educate me. We have relatives in St. Louis, Mo. address lblack0@ibm.net
Comment 002
I am a forty six year old female that was diagnosed with idiopathic subglotic stenosis 14 years ago. Have had laser surgery but dilatation was more successful but has to be done every so often. I am interested in doing something else other than the dilatation. email: kathy.dawson@carrier.utc.com
Comment 003
I am a 39year old female of Gatesville Texas I was diagnoised with ideopathic treachea stenios.I have suferring with this for about 5 years. I'm going to a Dr. in Dallas Texas. I have had two lasier surgery's I'm ready to get something done that will last. I'm very scared.My email adress is grannyward@iwon.com. Please respond if you can help.
Comment 004
I am a 39 year old female from Saskatchewan, Canada. I was diagnosed with idiopathic subglotic stenosis in March 2001, after the doctors were unable to intubate me for a urinary tract surgery. My thrachea was restricted by 60 percent. I was referred to Toronto, to Dr. Patrick Gullane, a doctor who specializes in this surgery. He also goes all over the country teaching this procedure. He informed me that dilating or having laser surgery is a waste of time as the stenosis will return in time, surgery was the only option. I will not lie that the surgery was minor, because it was very major and I was in the hospital for 3 weeks. If anyone can get referred to Dr. Gullane, he was the most amazing Dr., he is the best in Canada and he had the most amazing bedside manner I've ever seen. I went home with a T-Tube in my throat to keep my vocal cords from fusing together, and returned to Toronto 8 weeks later to have the tube removed. Dr. Gullane showed me pictures of my throat that showed a larger airway and he was very happy with the results. The only problem now is my right vocal cord is not working so I'm still whispering, as I've been since my first surgery. This can be fixed if the voice does not return on it's own. I am also taking the medication Losec for reflux, as the Drs think this may be a probable cause for the stenosis. I'll be on this med. all the time, but I'm willing to do this to ward off any futher surgery. I hope this helps anyone who has idiopathic subglotic stenosis and if you want to contact me, I look forward to it. b&jgehl@imagewireless.ca
Comment 005
bkrause@cnsinternet.com My 11 year old daughter was diagnosed with tracheal stenosis in 11/01 after being treated for 7 years for asthma which she never had. The only permanent option offered her was a tracheal resection. She underwent surgery at the University of Iowa by Dr. Richard Smith. It was major surgery and very scary. He is a very caring, skilled, competent and excellent surgeon. This condition is very well known to him and patients come from all over the country to him at the U of I. The U of I has one of the top otolaryngology depts in the country. Her recovery was excellent and she is now living the life of a normal 11 year old without the significant breathing problems and medications associated with asthma. Without his intervention she would not have been able to participate in sports, play her musical intrument or perform any activity that would exert her breathing to any extent. I would recommend him to anyone.
Comment 006
Our little girl has been diagnosed with Subglotic Stenosis (it's congenetial), graded Cotton2 last week. She's 6 months old and will have to undergo single stage larngeal reconstruction in 4-6 weeks time. If anyone has any links to information relating to this topic I would be delighted to receive at claire_b_1@hotmail.com
Comment 007
I am a 47 yr old woman and I was diagnosed about a year ago with a web and have had several successful surgeries with Dr. Dedo in San Fransico with the use of his ventilator and his technique I hope to see an end to these surgeries. My last surgery it had only grown 1 milimeter. So I now can start spreading the surgeries farther apart. I do see a light at the end of the tunnel (trachea)
Comment 007
Sherlynmain@hotmail.com I am 47 yrs old and have been diagonised with a web for about a year now. I have been seeing Dr. Dedo In San Fransico with his invention of the Dedo ventilator and his tecnique I am out of surgery and home the same day. I have seen alot of progress. I was a 4cm and now I am at 10cm. My last surgery it had grown only 1cm. I do see a end to the surgeries there is light at the end of the tunnel (or trachea)
Comment 008
I am a 50yr old female and i have been diagnosed with subglotic stenosis. I have had several surgeries with much encouragement from my doctor which practices in Wake Forest University Baptist Hospital in Winston Salem,NC. The surgeries seem never ending and Im ending up with more scar tissue which makes the disease worse. I would like to find a permanent alternative to cure the problem please email rich3825@bellsouth.net
Comment 009
K. Ewasiuk stash@telusplanet.net Approximately 4 1/2 years ago I started experiencing difficulty breathing. As an avid runner and inline skater, this became increasing problematic during these activities, and eventually just breathing became almost impossible. My GPs insisted I had asthsma and started me on a plethora of steroids that never worked. Despite my complaints that it felt like something was lodged my throat, which was obvious on both inspiration and expiration, I was repeatedly denied requests to see a specialist. They insisted it was asthsma, and that it was only a matter of finding the correct medication. WRONG! I was ultimately diagnosed with subglottic stenosis, which my Alberta specialists attribute to acid reflux, which is now controlled with Nexium. I was fortunate enough to be placed in the care of Dr. Patrick Gullane in Toronto. On December 5, 2002, he performed a crichotraceal resection, a very involved procedure. After more than 4 years on a medical and emotional rollercoaster, I finally have some light at the end of the tunnel. Aside from being a "BRILLIANT" and globally recognized surgeon, Dr. Gullane has a bedside manner that is second to none. I truly feel blessed to have finally landed in his care. The most important lesson I have learned from this experience is that I am the best judge as to whether my body is operating optimally, and to find a GP who genuinely listens and trusts your knowledge of your own body. I could have been spared a great deal of grief, had my previous GPs listened to me in the first place.
Comment 010
Kim
gordonutm@netscape.net I was diagnosed with sub-glottic tracheal ste-nosis in 1998 after doing the runaround routine with the asthma for a year. After 7 laser surgeries and three doctors,I was recently told the underlying cause might be autoimmune. All bloodwork has come back negative for that though. I'm scheduled for # 8 in two weeks; the last laser and dilatation only lasted 2 months! I would love to hear from anyone with information regarding any similiar circumstances.
Comment 011
Thank you for this space to write. My name is Carla. I was operated on 14 year ago for a subglottic web. Average of every two years the web or scarr tissue grows back. I would like to have an end to the surgeries. If any information on subglotic stenosis, please e-mail me at Carla_248.com
Comment 012
DeniceOlson@wmconnect.com I was diagnosed a year and a half ago with my subglottic stenosis. At first, was thought to be asthma or a new allergy. After going to an allergist, was told most likely a webbing in my trachea. Was referred to a local ENT who sent me for CT Scans (negative) and who also did a bronchcoscopy. Found a narrowing and had my first laser surgery. Breathing was great for approximately a week, and then the problems came back. Was referred by my ENT to a specialist in Denver, CO who sent me for a fine cut CT, in which my subglottic stenosis was apparent. I have been told that my stenosis is due to reflux even though all the torturous testing I went through says that there is no reflux present. I am now going in for laser surgery #6. It is a very frustrating situation. Am considering resection. My ENT in Denver will be taking measurements during the next surgery to see if the stenosis is too far up the trachea. She says if this is the case, a resection is not possible. As most do, I am sure, I feel like there is something almost strangling me. It takes a toll everyday trying to concentrate on breathing and trying not to pass out.
Comment 013
joelvenuse@yahoo.com
Comment 013
joelvenuse@yahoo.com
I also have subglottic stenosis. Was told of a surgeon in Mass General in Boston named Dr. Douglas Mathisen who has done about 90 resections. I met him 4 months ago in consultation. He can be reached at 617-726-6826. His secretary's name is Ireida. Also I found a web site called: tracheal_stenosis@yahoo.com where a bunch of women have this same problem. Three of them that I can think of right off had their surgeries done in Boston - Roberta, Theresa and Debbie Renee. (I am still too chicken to go that route but probably will have to in the future.) Others on the web site had their resections done by other doctors and some of their stenosis has come back. So the best possible place to check out would be Mass General in Boston, Dr. Mathisen. Hope this helps. Can't believe all the women who have this problem. The tracheal web site has been a lifesaver to so many of us. Check it out, you won't be sorry.
Joanne
Comment 014
E. Boudreau eileenboudreau@ns.sympatico.ca I live in Nova Scotia, Canada & have been diagnosed as having Tracheal Stenosis. I have heard of a Dr. Patrick Gullane in Toronto who does Tracheal Resection surgeries. If you have had this surgery, or know of anyone who has had this surgery, would you please contact me at eileenboudreau@ns.sympatico.ca Thanks & blessings, Eileen
Comment 015
Heather Bass - heather_bass1@yahoo.com
I have been diagnosed with tracheal stenosis,I will be having my third laser surgery in two days. I can go about a year until I can't function without getting light headed. My mother had the identical problem. She had 3 surgeries and then had neck disection-which put her on disability for one year! It was horrible to watch and totally scares me. I have my surgeries at Parkland Hospital in Dallas, and I am a patient of the ENT clinic.I would like to know if can expect anything to change in treatment-Is neck disection the only answer? heather_bass1@yahoo.com
Comment 016
Taunia Richey tkrichey@msn.com
All of these comments: same story, different name, different city (almost 100% are female). . . I am 50 yrs old from Dallas area. As most, at 47 sought medical treatment and wasted a yr being misdiagnosed w/ asthma. After properly diagnosed in 2000, had 5 laser surgeries and reconstruction w/ rib graft. All failed procedures. Search for answers brought me to the Yahoosupport group (tracheal_stenosis). This group is a wealth of information. True idiopathic tracheal stenosis can be managed for a while, but ultimately the best hope for "cure" is tracheal resection. The best of the best are at Mass General in Boston -- Drs. Cameron Wright and Douglas Mathisen.
Comment 017
Pat patgheen@hotmail.com
I have had difficulty breathing for 30 years, but it started to get worse the last 3 years. Doctors told me I had asthma but no medications worked. When I was finally diagnosed I only had a straws width left to breathe. I was told the scar tissue was very old and probably from trauma when I was young. We traced it to being hit in the neck with a field hockey stick. I have had two laser surgerys and now they are recommending tracheal resection. I go for my consultation next week. My doctor is Dr. Gregory Weinstein at University of Pennsylvania Hosp. He is supposed to be one of the best. Any input or info would be great. This site has been so helpful. I have never met anyone with my problem. Now I don't feel so alone.
Pat
Comment 018
I was diagnosed with subglottic stenosis in 2001. It took a year to finally get the right diagnosis. My airway was down to that of a 38 week premature baby. Laser surgery proved ineffective.
I was referred to Dr. Robin Cotton, Cincinnati Childrens Medical Center. He and his team did a Cricotracheal Resection. I was in ICU for 3 days and another 3 in the hospital ward. I did not need a trach tube.
It was not an easy surgery but in my case it was absolutely essential.
The doctor says he thinks I am cured. I think so too. creeves@insightbb.com
Comment 019
Hi all, its been enlightening to find so many "sisters". Our stories all seem similar, misdiagnosed with Asthma, I discovered my own, I was managing a Special Procedures Dept for a hospital and after a year or so of sucking on puffers that didnt do a thing except give me the jitters. I convinced the Resp. tech to try out his new equipment on me and do a Pul. Function Test. It was flattened..."obstruction" From there our stories are similar,I went on to be investigated for the auto immune disease Wegeners..so far so good.. and to be dilated. I have had three and now need another. I seem to get a bit over a year from them if they do the injections of long acting steroid at the stenotic site. Im happy with this consertive approach until something a bit less terrifying than resection comes available. I have found it very useful to keep my own copy of the medical file, photos and lab reports as I have been referred to various Dr's of the coarse of discovery. I dont know that i can offer much to anyone but id be happy to do what i can ,,even if its just give emotional support . jeanniebowering@hotmail.com