Living With Idiopathic Subglottic Stenosis

Almost 4 years ago I was diagnosed with Idiopathic Subglottic Stenosis.  I am looking at facing my 8th dilatation and wondering if it will ever get better.  The experience of diagnosing it  is very similiar to other peoples experiences.  They thought I had acid reflux (which I don't) and then they found my stenosis through doing a scope.  I have been very blessed to have been directed to a wonderful doctor who is working with me to make the best decision for my care. 

Even with a great doctor, there are times that this condition is very isolationg.  I get up in the morning to feel more tired then when I went to bed!  I love being active and this has really changed how I go about my day.  Plus I have to get up and face the challenges because I have children that depend on me.  This condition is rare and there are not a lot of people to talk to about it.  I think that is the hardest thing.  Plus the people in your life sometimes expect the dilatation to be the fix and you to go back to "normal".  It doesn't work that way unfortunately.  I dread the reconstructive surgery and wonder if there is anyone out there that has been through it and what was it like?

I always try to be positive and look at all the wonderful things I have.  I just hope more research will help find answers to this mysterious condition.
Losgunna Losgunna
36-40, F
24 Responses Sep 3, 2011

I was just diagnosed with subglottic stenosis and I live in northern Ontario Canada. Like many others, I experienced shortness of breath, noisy breathing and excessive mucous. Now, I am fatigued and coughing up bloody sputum on a daily basis. I am relieved at finding an answer to my longstanding health issues but a little concerned about the prognosis. Can anyone recommend a specialist in Ontario?

We have a Facebook group for Subglottic Stenosis called Living with Idiopathis Subglottic Stenosis

I just have the surgery yesterday it was great feeling a little tired from the anestesia but good

Hello. I have had a very long and hard battle with ISS. It started when I was 20 yrs old, before this event which happened almost overnight, I was a very active person. I cycled several miles a day and went to the gym 5 days a week. Then I got a typical chest cold and sore throat combo. After a week I tried to get back into the gym, and it was like I hadn't exercised for years! Like a lot of people have been saying, I had an abnormal amount of mucous, so i was assuming I was still sick. But after 6 months, I told my doctor about it and he sent me to an allergist. The allergist seemed to think he had all the answers, barely let me get a word in, and shoved me on puffer for asthma. After another 6 months experimenting with the p uffers, I told him they weren't working and he said I was imagining things! Well I went back to my GP who basically told me to listen to the allergist. I tried but at this point I was in such bad shape, I had lost 30 lbs eating was difficult, walking etc. Finally he sent me to a respirologist who did a breathing test and said I was breathing like an 80 year old woman, ordered a CT scan. CT was done following month, and they said it would take another month to get results. Ended up in emergency because it closed fully for about 2min. They looked at my CT and said I had a mass. Within the week and after seeing 5 or so drs I had a dilation and was diagnosed. I was 4mm wide and 2min below my vocal cords. I had a year of dilations (rigid) which eventually decreased in relief and it started closing faster. I had the resection October 2013 with complications. Although the breathing is better, its not where it was and I feel scared to exercise, feeling like it could come back. The worst has been my voice. For two months I had no voice, then I could only squeak. I went to voice therapy FOR 4 months and she said she could do all she could. My voice is very raspy now, very low and I cant project it. Its the first thing ppl say when they meet me or on the phone they call me sir - its very going to be seeing a larynx specialist to see what can be done. Its been very hard and im discouraged because things are never ending.

I believe that I have had this for over twelve years... long story but wasn't too bad. Then family had a bad go with chronic lyme disease. I was on IV antibiotix for a year along with orals. Had orals for another year after. Also treated for babesiosis-- another tick born disease. Our whole family had it.... Breathing seemed better but had other bad symptoms dealing with.... Then about 2yrs after breathing started to get worse, clearing throat, coughing up a small green yuk several times a day etc.... Finally in 2010 had major problems breathing. Went to Dartmouth medical center and said let's start at the beginning and figure this out... Lungs were 100%, heart fine, then into the GI stuff, finally told them needed to more now as close to just walking into an ER... I had upper endoscopty, wore something to measure reflux... which had then a cat scan of my throat found the stenosis.... Dr at Dartmouth cut some out to bioopsy.... it was fine. He took about about 30% of the scar tissue and I felt like a flood of air came in when I left the hospital and was breathing outsisde.
That was in April 2011.
Had a surgery to repair hiatel hernia and reflux too.
But breathing is back..... Planning to see a lead dr at Mass General... a Dr. Mathieson I believe is the name.

Having my hip replaced next week at Dartmouth, picking up my file and sending it all off to MA General....
REALLY hoping to have some temporary fixes if I can for awhile. Have my own business, husband retired, looking to downsize, still supporting adult bipolar daughter who is getting on her feet.... If could put this off some I will.....
So, how long is the recovery time after a re-section?? Am 65 but in good shape considering.... Ski tons in the winter, volunteer at the mountain, very active etc... but must walk slowly adn DO slowly..... or can't breathe.......
This isn't fun..... this is a great site.... Looking forward to hearing from you. I live in MA but in the western end of the state. Still not that far... 2 hrs from MA General.... and I hear that they are one of the hospitals for this.

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I was diagnosed several yrs ago & recently went through balloon dilation. How are you?

I seem to be in a similar situation to you. I was diagnosed about 5 years ago but had been breathless on exertion since childhood. It got worse at this stage and I have had (initially) laser and then balloon dilatation ever since on a 4-6 monthly basis. At first the operations were a relief, then a bit depressing. Now I have accepted that this is my life until they come up with a better solution as it is all a bit of an exhausting process. I have changed my work situation to one that is more flexible (I don't do less, just found more flexible options and also studying to work on some more for the future). I've decided to seize the day as I cannot be sure what the future will bring. This has been a turning point for me and has made me more resilient in general I think. I try to eat well as my ability to exercise has diminished and I try to squeeze in non cardio exercise where ever I can and according to how my breathing is going. I live in Australia and was told only about 8 or 9 people have this condition here and they are mostly women about my age (forties). This is interesting....

Hi everyone! I have the same thing. I'm at 50% breathing and always wondered why I struggled on roller derby! Certain things I could achieve, but excessive exertion caused asthma-like tightness. I'm going for balloon dilation on January 14th. After reading the posts, I feel concerned and less optimistic. Seems like one dilation is never enough. :( It makes me sad. I thought my breathing would be back for good. hmmmm

My wife had idiopathic subglottal stenosis. It was really bad, like severe, untreated asthma. She lost 50 pounds and could not even sleep through the night or walk up a flight of steps. She went through years of misdiagnosis, and after it was finally identified, she received progressive laser treatments at a leading hospital. The treatments provided minimal, short term relief and actually exacerbated the problem due to incremental scarrring from the laser treatments. Our last hope was Dr. Mathisen at Mass General in Boston, whom I read about in a blog. He performed surgery on my wife, essentially clearing out the scarring and opening the windpipe. My wife can breath again! She isn't running marathons but she has resumed her normal life and even plays tennis again. It's been over a yr now since the surgery, and knock on wood, all's well. A miracle.

Did he do laser surgery of a dilation? I'm asking because I have recently been diagnosed with subglottic and distal trachea stenosis. They did a dilation two weeks ago and are preparing to do another one next week as the stridor is worse, and becasue of the airweay issue my asthma is worse too!

I was diagnosed this past February after collapsing as I was walking into the ER and being code blue for almost an hour, they performed a tracheostomy and finally realized that their original diagnosis of asthma from two years prior had been wrong, I decided not to do the resection because it seems far too aggressive, but am seriously considering the laser procedure, does anyone have any thoughts on this? It has been so isolating to have this condition, nobody understands that I cannot do any of the things I could before, that the trach tube is horrible, even though two months ago I changed from the rigid plastic kind to a silicone stent and have been able to get off antibiotics, since the previous one kept me chronically sick.
I live in the Denver CO area and would like to know if anyone has a great dr around here? I opted not to try the dilation because the tracheostomy increases the risk of complications with that procedure, so it looks like the best option to try right now is the laser, any input will be greatly appreciated. Thank you

Thank you for your reports on your subglottic stenosis. It is good to at last hear of someone else with the condition. For 2 years doctors said "Harsh nasal breathing " Friends thought I had asthma & asked why I was not using my puffer. By the time I was too breathless to walk around, my doctor sent me to a specialist who recognised it as subglottic stenosis. I have now had the high pressure balloon expansion 4 times, at a city 5 hours away from my home. This has needed re doing after about 6 months.
Does anyone know what we should or should not eat please ?
I take Gaviscon double strength & Pantaprazole, but wonder if they are helping. I am sure there are other people in Australia with it, but I have not met them yet

I just was diagnosed yesterday but like you it was acid reflux or then COPD. Contact me on Fb Princes Lilly prickleybottom Yes I know odd name but I did the name as a joke with friends. How to hear from you soon!!

I was wondering if anyone had to have a trach for their dilations and other surgeries. I have adult subglottic stenosis. i recently had jaw surgery that required a trach due to the narrow airway. so, i still have it and my doctor is recommending dilation since it is more conservative. i just want to understand how long i might have the trach and if it will be required for subsequent dilations or surgeries. a secondary option is cordotomy and partial artenoidectomy, which is much more invasive and irreversible. how did you doctor ensure you had airway during your dilation and resection surgery?

thanks for starting this tread. i was very relieved to find people like me.

I was diagnosed in September 2012 with idiopathic subglottic stenosis after months of worsening breathing. People continously asked me if I had asthma, even while I was sitting down at rest. My breathing was rapidly worsening. I went into urgent care in August and they initially suspected Asthma and did a nebulizer treatment to no avail. They told me they did not know what was wrong and referred me to Pulmonary medicine. Two weeks later I saw a Pulmonary doctor who ordered pulmonary funtction tests. I did very poorly on these tests. My breathing was only at 36%. The Dr. ordered a chest and neck CT scan with contrast. The CT scan showed that my airway was narrowed by over 50%. He said that he was not sure if it was cancer or what it was. He referred me to otolaryngology. I saw the Otolaryngolist the following Monday. He went down my nose into my throat with a scope to see what was going on. He decided to do a ballon dilitation that Friday. He also injected my trachea with a steroid. I woke up after the procedure able to breathe normally and was very relieved. They sent me home on 40 mg prednisone and an antibiotic. A couple weeks later I saw the Pulmonary doctor and the Otolaryngology doctor again. The pulmonary doctor referrred me to GI and Rheumatology. He referred me to GI to rule out GERD (gastroesophageal reflux disease). The GI provider ordered an EGD, which is where you are under conscious sedation and they go through your mouth with a scope all the way to your stomach looking for ulcers and other things. They also take photos and biopsies if needed. Mine was normal. They also had me do a monometry with impedance study. This is where they go up your nose and down your throat with a small tube and leave it there for 24 hours to measure for reflux. The tube is connected to a monitor and you press a button whenever you have a symptom such as reflux or heartburn. This test was unpleasant to say the least. Again, this test was normal. I was sent to Rheumatology to rule out vasculitis and other autoimmune diseases. This doctor ordered a lot of blood work, including tests for Wegner's Granulomatosis, Sarcoidosis, etc. All were normal. I was on prednisone this whole time. I have been on prednisone now for six straight months, with a couple of unsuccessful attempts at tapering. Every time we taper the prednisone, the breathing problem comes back. So, the Rheumatologist prescribed methotrexate in addition to the prednisone. These meds are scary. They have a lot of potential consequences. I have gained 26 lbs since starting the prednisone in September. The Doctor told me that long term prednisone use can lead to obesity, hypertension, diabetes, etc. This scares me. I was told in February by the Otolaryngolist that he did not want to do another diliation because it would cause scar tissue. I'm not sold that my breathing is being controlled the way it should be by these meds and these meds scare me. I see the Rheumatologist tomorrow. It's nice to read here that I'm not alone, but I wish that no one had to deal with this. If anyone has any thoughts or suggestions for me, I would greatly appreciate it. Thanks!

So much of what you\'re saying sounds so familiar to me. Just letting you know that there is someone who has gone through virtually the same thing as what you have discussed here. I wouldn\'t wish this on anyone, but personally, it\'s comforting to know that we\'re not alone.

Im having my first dialation this week and am scared to death. They told me they cannot knock me completely out I will only be sedated. I am so scared. I cannot have reconstructive surgery because the inflammation is to high up near the voice box. I am hoping this dialation lasts a long time. Can you tell me more about the dialation?

Dear LR72,

First I have to say that it is understandable that this is scary, but dialations are the less intrusive way to go. Not sure what type you are having or have had, but I can just tell you from my experience that it feels just like a bad sore thoart after the procedure. You get instant relief and can breath so much better. Recovery is fast. The sedation is different for everyone. For me it was like being put right under. I felt nothing and remember nothing! As far as how long it lasts - no one knows. For some people it can be years or a year. For others it is only months. Sometimes a couple of dialations are needed to give lasting effects. I know that can be a scary thought, but the dialations are a good start to managing this. Keep talking with your doctor and keep educating yourself. Knowledge is power and between you and your doctor, hopefully more solutions will appear for you. Good luck and if you have anymore questions don't hestitate to ask.

I had the dialation this past Friday he did a balloon dialtion when I came out he said everything went very well. But within minutes of waking up I had severe chest pain they did a chest ray and Ct scan which showed air had leaked into my lungs they had to bring me back into surgery that night to see if they could find the leak and insert a drain tube in my neck to let the air escape I just got home from the hospital and still not feeling great the doctor said I may need another dialation very soon and he mentioned sometime down the road resection. I have two kids who need me. I am not sure what to do. I'm going to see the doctor in the morning if the stenosis is coming back that quickly its not good I am hoping its not. Did you have a resection?

Dear LR72,

My heart goes out to you.
What an ordeal. I hope you are doing better now and the doctor has some good news for you. My thoughts will be with you.

Yes, I did have the resection surgery and it has been 10 months since I had it. Let me say it was not an easy thing to do and I have children also to think about. But for me I am happy to have made that decision. The dialtions were not working any more and there was really no other choice. But I trusted my doctor and he would not have done it if he didn't think it was the right choice for me. I think the hardest thing about the experience is having a Montgomery t-tube in for seven weeks to keep my airway open while it healed. Once I excepted it and I knew it wasn't forever - I could get through the day. I hope I didn't scare you. It is a big surgery and important to think about before doing. In the right hands it can go fine. My stenosis is completely gone. They were able to remove all of it and I had the t-tube removed with no problem. Mine was very close to the vocal cords so it was a tricky surgery, but my voice is fine. I also just had a small surgery last week to repair some scar tissue that the t-tube created when it closed off. So far the resectioning went well for me. Everyones experience is different with different challenges. Just keep talking and asking questions. It is a big decision and you and your family have to do it together. Please don't hesitate to ask me more questions. I know it is scary and sometimes you feel like you have no answers because this condition is rare and the medical advise can be so different. But you are not alone and the doctors are there to help. Good luck and let me know how it goes.

Hello all,

I am a 27-year-old woman and was just diagnosed with ISS today. I am located in Chicago and am looking for a second opinion on what treatment is best for me. I am currently being treated by Dr. Michiel Bove at Northwestern and he seems to be doing a great job, but given the seriousness of the condition and treatment options, I am seeking a second opinion. I am open to flying to other locations to see doctors if they are highly recommended. Can anyone offer names of some of the best otolaryngologists in the field? I found one at Massachusetts General named Dr. Steven M. Zeitels who seems like the expert.

Thank you for your help and support.

Hello Avocado,

Not sure I can recommend a doctor unless you are willing to go outside of the States. But it is great that you are seeking a second opinion. I did the same thing when I was first diagnosed. It is always better to make sure if there is any doubts. Just keep asking questions - knowledge is power. I found with some doctors and this conditions I was the one educating them. It is rare and not seen by most doctors, so good luck and if you have any questions at all, feel free to ask.

Hello Avocado,

I live in the Chicago metro area and have ISS. I was diagnosed February 2012 and will be having my 3rd dilation next week. I am treated by Dr. Richardson at Bastian Voice Institute in Downers Grove.

It took me four or five years before I was diagnosed. In the beginning I assumed I was out of shape and worked hard to get into shape. After building up to 50 miles of walking a week and then 100 miles per week of cycling I was still sounding like I was breathing through a straw when I exerted myself, I knew it was something. Asthma was suggested but I felt nothing in my lungs, heart was good. I gave up trying to figure out was wrong and just kept exercising to stay fit. A year and a half went by and then I noticed when I went home the mucous seemed to have gone away so I thought maybe it was an allergy. Went to an allergist who confirmed I had seasonal allergies but this breathing issue wasn't and referred me to Bastian Voice Institute. When I saw Dr. Richardson he took a detailed history and then scoped my trachea. Was finally given a diagnosis that made sense. I had my first dilation a week later. It lasted five months and the second one lasted eight months. I get dilated when it gets hard to breath with exercise and the stenosis is not as small as the first time (which was 5 to 6 mm). This is working for me now.

I was diagnosed nearly three years ago after the same confusing symptoms you have all described.I had reached a point of not the being able to complete a sentence without taking an extra breath and any exercising,cold Air or stress made it worse.. I had laser surgery and have been doing fairly well until recently when I have realized the symptoms are getting worse again. My specialist suggests that two years is the average time for the symptoms to return and another layer surgery required. I also have alot of phylem which collects in my throat and further restricts my breathing. I use a mild steroid nasal mist which seems to help some and makes it easier to breath. It is frustrating that the stenosis continues to reoccurring and that there is no known cause or cure. It is nice to know others who are experiencing the same thing. I will be making an appointment soon to see my specialist and will probably have laser surgery again.

Hi, I was also diagnosed with idiopathic subglotic stenosis this year. It all started the last week of April 2012 when I had a sore throat, some weeks later, I lost my voice then started the shortness of breath, coughing, hoarseness, wheezing as if I had asthma which I don't. Went to various doctors, from primary care physician's office (seen 3 different doctors there), ENTs (2 different doctors), Endocrinologist (being a diabetic for over 30 years), Pulmonogist (felt as if I wasn't getting any air in my left lung), Rheumotologist (via recommendation from an ENT because of the prednisone prescribed), etc. I've seen quite a few even for 2nd opinions. Had a biopsy and thus far, ENTs stated subglotic stenosis. The last doc I saw today indicated idiopathic subglotic stenosis - meaning no one has any idea what's causing my issue. I'm on prednisone which helps me breath but cannot or should not be on this medication for too long. Also prescribed methatrexate to ween my off of prednisone. I just want to be cured of this. I'm tired of seeing all of these physicians but I need to find out why this is happening to me. I'm not interested in surgery but this may be my last resort.

Dear as320,
It sounds like you are very discouraged and fustrated - which is totally understandable. This condition can test any persons resolve. It sounds like you have had a lot of doctors and not enough answers. Unfortunately with a diagnoes of it being idiopathic (meaning they don't know what has caused it) the doctors are in the dark just as much as you and I. So the best thing you can do is keep talking to your doctors. Read as much as you can and come up with a game plan. Have you had any dilations yet? This is less invasive and can really help some people. Have you been tested for any diseases like Wagners - which can be one cause of subglottic stenosis. Have you had any previous surgeries that could have caused scar tissue to form in you airway? These are all questions and things my doctor asked of me. Not sure if this will help, but there are amazing doctors who are trying to figure this out. Just don't give up and keep advocating for yourself. Good luck and if you have any more questions, please don't be afraid to ask.

Dear Parks and Rec, No worries about asking questions. I know what it is like to feel lost and even alone in this journey. There is not many who have this condition. As far as the surgery; it went really well. No regrets and don't mind the scar! I am four months out and feeling wonderful. Yes, it was scary and there were challenges like having a t-tube for seven weeks to make sure I didn't loose my airway during the healing process. Could only whisper because the tube was through my vocal cords, but my voice returned after it was removed. Still have to work on the projection of my voice. But I was never a loud person to begin with! Plus swallowing is a little weird, but getting better. Just feels tight like when you have a cold. Had a scope done eight weeks after and they got all of the scar tissue removed. Hopefully new tissue doesn't return, but probably wont know that for a few years. So I would say so far so good. No regrets. I forgot what it was like to breathe! It truly is amazing! So hopefully that answers some of your questions. If you have any more questions, please do not hesitate to ask. Good luck on your next dilation. Take care for now.

Dear Losgunna, How are you doing since the resectioning? Are you still happy with the decision? I've been reading up on the internet about the resectioning of the trachea, and it seems scary. Since my last dilation in June, things were going great, but as always, it's grown back. Going for dilation #4 the first week of September. Which is okay for me because my sons will be with their dad that week. I did speak with my doctor again about having the dilation so frequently, and he still believes that this is the best route for now. But I am really curious on what you think about your surgery. Is it still something you are happy about? I hope you don't mind my asking, I am just lost with looking for anyone with this same experience. I do hope everything is great with you and I look forward to hearing from you.

Dear Losgunna, How are you doing since the resectioning? Are you still happy with the decision? I've been reading up on the internet about the resectioning of the trachea, and it seems scary. Since my last dilation in June, things were going great, but as always, it's grown back. Going for dilation #4 the first week of September. Which is okay for me because my sons will be with their dad that week. I did speak with my doctor again about having the dilation so frequently, and he still believes that this is the best route for now. But I am really curious on what you think about your surgery. Is it still something you are happy about? I hope you don't mind my asking, I am just lost with looking for anyone with this same experience. I do hope everything is great with you and I look forward to hearing from you.

I was diagnosed with ISS in Feb. of this year (2012), and I had my first dilation in Feb, second in April and will have my third next week (June 13). My doctor informed me that the dilation is the best way to go right now, and I was hoping, if anyone here is going a different route. Having a dilation every couple of months is difficult. It just grows back so quickly, I'm wondering if I need to explore other options, and really need to hear from someone who has ISS and what has worked for them. Thank You!

Sorry that I haven't replied until now, but I have been recovering from my reconstructive surgery or what they like to call "re-sectioning of the trach" So far all is going well. I haven't breathed so well in 4 years! And I still have my vocal cords! So this for me was a good decision.

Hopefully your dilation has gone well and you are recovery well also. There are so many options out there. Some people have found that laser surgery (instead of dilations) will help and give you a longer time between the surgeries. Everyone is different, so it is important to keep talking to your doctor. I had 7 dilations over a 4 year period and decided with my doctor that it was time to do the re-sectioning because it was growing back faster and faster. Plus my doctor didn't like the laser route - he believed that it could create more issues. Talk to your doctor and try to come up with another solution. It sounds like you might need to explore other options. I can't imagine having dilations every couple of months. It would be hard and frustrating. You can't get on with your life if you can't breathe. If you want to know more about my experience with the re-sectioning, please do not hesitate to ask. I just wish I could give a straight one answer fixes all, but this condition is so rare and the solutions are so different for everyone. What helps one person may not work for another. So keep talking to your doctor and hopefully you will find what helps.

Good luck.

I was just told I have this after a year and of being told I had different things (acid reflux, post nasal drip ect...<br />
I am going to get a balloon dilation next week I thought this was going to make me feel better and have more energy until I needed the next one. It seems by your comments here I may be being to hopeful.<br />
I haven't met with the Dr. yet so I don't know much about living with this. Are you able to exercise? I have been trying to lose 50lbs since I had my daughter with was when the wheezing started.

No worries! Everyone is different when it comes to this condition. Just make sure you are open and honest with your surgeon and they will help you decide the best way to manage this condition. My dilations worked for awhile and I was able to get back to my regular self for a least 7-8 months, but after that I would need another one. After four years of this my doctor and I decided that it was time to do the reconstructive surgery. Which is happening soon. Sometimes people only need a few dilations and they seem fine and others need them once to twice a year. Unfortunately there is no one answer fits all. But the good thing is that there are some amazing doctors who know about and treat this condition.
Yes there will be days that you are tired and unable to catch your breath, but it is still possible to do exercise. I used to be a real outdoor person, but now I walk every day instead. Yes I have had to limit myself when I am getting closer to needing a dilation, but after I can breath normally and I am back in with both feet! It can be a frustrating condition because you have a hard time breathing and then you have surgery and you can breath again. Then you start to feel it coming back and you once again have limitations put onto you. Just know that you are not alone. Don't be afraid to ask for help when you need it. If you have any more questions or concerns, please don't hesitate to ask.

You will feel much better after your dilation!

Thank you

I hope your reconstructive surgery goes well and last a looooong time.

Thank you

Thanks. I have my toes and fingers crossed! Good luck also.

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Yes, I have been through this and I know what you're going through. I was diagnosed with subglottic stenosis when I was 14, after being treated with asthma and allergies. I had reconstructive surgery and apart from some complications, I was breathing much better. Approximately 4 years later, I was experiencing the familiar tightening in my airway, much to my surprise. I then received my first balloon dilation. I'm going to need another soon, probably in March. Let me know if I can help you or if you have any questions!

Thanks. I am now having reconstructive surgery in a few months. It is a little scary, but after 7 dilations I feel there is no other choice. How was your recovery? Did it take long to get back to doing things? Any info would be a great help. I wish you well and I hope your dilation will help.

Honestly, the first week of my recovery was a blur. I was heavily medicated in the ICU for about a week, and then slowly weened off in the following weeks. I spent two weeks in the ICU with a breathing tube and 2 weeks on the airway floor of the hospital. All together, I missed one month of school. It took a few weeks to become comfortable walking again after sitting in the hospital bed for so long, and there was quite a bit of swelling in my neck. After the swelling went down, I was able to do some mild conditioning to get everything back to normal. After such a major surgery, it takes at least a year to regain all of the strength as before. I, unfortunately, came out with a paralyzed vocal cord. Subsequent surgeries to repair that set me back quite a bit. Ultimately, I would say that you will be able to condition in about a month. After the month, the swelling went down and I was breathing quite well. I'm not sure if everyone has this, but my chin was sutured to my chest for about 2 weeks (so I didn't move anything), so I had a few physical therapy sessions to regain movement and flexibility in my neck. Good luck to you. I look forward to you being able to breathe again.

Thanks again. It is nice to hear the honest truth. Mentally it helps me prepare. The whole chin suture sounds like fun! But we have to do what we have to do. I am sorry to hear you had a few set backs. I guess you can never tell how these things will go. But you sound positive and strong and that is half the battle. I hope you have success with your dilation. Good luck and I hope you don't need anymore "major" surgery. Breathe well and thanks again. It's nice to know there are others who understand.

Have you had your surgery yet? How is everything?

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