When I went in for the tracheal resection I was very excited. I understood that I would need to stay in the hospital for at least 5 days to recover, and it was a serious and invasive surgery. They were going to cut into my throat, saw through my windpipe twice, and then shorten my windpipe by removing the section that contained the stenosis. Then they would sew the two good ends together. The staff talked to me seriously and asked if I understood the dangers of the surgery and possible complications that may arise. I was aware… One possibility was that my vocal chords could be damaged during the procedure. So I would have a very altered voice if this were to happen. The worse case scenario is that I could die.
I recognize now how difficult that decision was, but after everything I had been through, my fear of death seemed to be muted. I was thinking “dude, I don’t care… If it can bring my voice back… Or a voice at least, we’re doing it!” At the time, I felt like not being able to eat or talk was hardly a life worth living anyway, but I now take it back. Steven Hawking is certainly a life worth living, and he can’t talk. Either way, I’m glad that I opted in… And I’m glad that I never feared having the surgery for even a second.
I vaguely remember being asked to to count back from a hundred. The next thing I remember is waking up and having no idea if the surgery had been done. So I tried to do something that I hadn’t been able to do for months: smell. I tried to breathe through my nose and it worked!!!! It smelled of disinfectant and sickness in my recovery room, but it smelled like regaining my senses to me, which smelled amazing!
I had been waiting for this surgery since losing my ability to speak since having a tracheostomy. My mother and father came to my bed to comfort me. They would ask me questions and I’d silently mouth an answer like my friends and family had become accustomed to. The surgeon who performed the surgery, and one of my many heroes, Dr. Brett Miles, came to my bed later that day to check on me a while after my mother and father were there. Dr. Miles asked me how I was doing. “I’m ok” I mouthed. He said “Go ahead, you can talk.” I had to remember HOW to talk. It was strange. I hadn’t done it in so long… I hadn’t even tried in a month, and it was very difficult then. I just tried and I talked for the first time in months! “I’m ok” I actually spoke! I knew that these words were gonna be a milestone for my recovery, and I should have chosen them better.
I was taken to a surgical step-down unit after a few hours in the acute surgical recovery room. The surgical step down unit was a room that I shared with 5 other beds. It wasn’t what I had been accustomed to, but I was not in a place to even notice any different. I considered for only a second the idea of making friends with my neighbor in their hospital bed, then came the debilitating pain. This was not a social scenario. We were all post-surgery and in pain. I didn’t want to talk to anyone anyways. It took a lot of effort and was mildly painful to talk.
I was so happy to have a voice despite the pain. It was so nice to be able to communicate again. Even though I really didn’t feel like speaking, it felt so good to know that I could.
This period is especially foggy. I was back on the hospital food (Boost) through my PEG tube, and given a whole lot of drugs to manage the intense pain where my throat was slit, but I could feel the most pain inside of my trachea. I’ve never felt pain like that. Not that I haven’t been in more pain, but I’ve never felt pain from a cut on my windpipe. I was given Morphine and Hydromorphone mostly. At this point, I thought back to my time at Elmhurst when I was able to stop taking drugs, but now it just hurt too much. Remember that it was about a month after the fall when I decided to refuse drugs before. This was now the first few days after a very invasive surgery. The pain was too intense for me to not have something to help me tolerate it. Can you blame me? I was constantly asking for more meds and they’d tell me that they could only administer every 4 hours or something. And the smells of sickness and disinfectant, which had been such a welcome surprise earlier, were starting to bother me.
See my video about Speech-Language Pathology that I created for the NYC Long Island University Speech-Language Pathology Department. Relearning to Speak after Brain Injury – The Power of Speech-Language Pathology
I was there for a good portion of this. You were a trooper to say the least…and hearing you speak brought tears to my eyes. Remember how bitchy the nurses were?
Thank you so much, Jami! Ya know, I really don’t remember much of this period. Probably because of the drugs that I was on after the surgery. I remember you being there and us watching movies and taking photo booth pics on my iPad. I’m sure that I wasn’t in a great mood the entire time, but you were awesome for helping me through that very uncomfortable time. Something’s coming back about disliking a particular nurse, but I can’t express how thankful I am to you, my friends and family, and the doctors that performed that surgery.
i remember this all too clearly. I was so surprised and delighted when Dr. Miles came into the recovery area after the surgery and said “Go ahead, you can talk.” and you actually replied in a voice we hadn’t heard in a long time “I’m OK”! Mom and I were blown away. We never thought you would be talking right after the operation. I really liked Dr. Miles. I talked to him before and after the operation. He took the time to explain everything clearly and carefully. He is a great person and a great doctor!
He is an inspiration. He’s a good doctor who communicates with his patients and takes the time to answer questions. I remember he said something about how many doctors won’t use email “because it creates a paper trail that can be used against you if they sue.” Dr Miles was like “I want a paper trail. I have nothing to hide. My job is to help people. I WANT to leave a paper trail! You don’t?!?!”
While I didn’t have a brain injury, I was diagnosed with subglottal tracheal stenosis about 13 years ago out of nowhere. No doctors seem to know why all of a sudden I can barely get air through my trachea. I have gained about 80 pounds over the course of the years because I have to remain pretty much sedentary. I’m afraid to ask any doctor to do this surgery for me because I’m afraid they’ll say I’m too fat… but I am desperate to breathe normally again and have a normal life. I’m a teacher and a mother, and tenderly referred to as “Darth Vader” by my friends who can hear me enter the hallway 5 minutes before I arrive–thanks to my stridor. Can you tell me about the doctor that performed this surgery for you?
I’m sorry to hear of your diagnosis. That is rough. I’ll tell you right now that the recovery from this surgery is awful and incredibly painful, so you certainly want to be in good health for it. If you are “too fat,” let’s first try to reclaim your health, and then I would bet you would be a candidate for surgery. I’ve written a book called “How to Feed a Brain” that is to be released soon. The guidelines do not include exercise, which is likely near impossible for you right now, and these same guidelines are helpful to lose weight and to reclaim health in general. In order for the brain to function and repair optimally, which is what this book is all about, the body needs to be in good shape. Check out the website and stay tuned.: http://www.feedabrain.com
AMY- I too was diagnosed with subglottal tracheal stenosis out of the blue one year and the doctors didn’t know what was causing it. I too gained 60 + pounds. I laugh because the running joke in the office is my breathing and they too call me “Darth Vader”. I train around the state of MN and this issue can make it very difficult for me to breath, talk, and be nervous. I have been dealing with regular dilatations to open up my airway and make it easier to live life. Now that I have a two year old who I can’t keep up with and I am tired of a temporary fix. I am now looking into a re-sectioning surgery. I have been in contact with a doctor in Minneapolis who is a specialist in this area or surgery and he did not harass me about my weight. He said that I was too young (39) and that I had too many years to continue living like this. The operation would give me my life back and it was 95% successful. I came across Calvin’s story because I was nervous about the recovery period and I needed to know that others have had successes with it. I just want to wish you the best and hope that you take that first step and at least meet with a doctor to talk about the possibility.
So did u ever do the resection and has it been successful?i am too diagnosed with idiopathic subglottic stenosis and looking for a permanent fix
It was successful! I owe my life to Dr. Brett A. Miles, DDS MD FACS at the Department of Otolaryngology at Mount Sinai in NYC. Let me know how I can support you. 🙂
I was in a car accident in my first two weeks of college. I was hit by a nurse going 30-35 mph. I have been trying to recover my voice since and it has been getting better. Like you I had my tbi in 2011, I guess I’m just wondering what you did for therapy for your voice.
One of the simplest things you can do is to gargle water vigorously every day. This will improve vagal tone or communication with all of your organs (the vagus nerve innervates all your autonomic functions like digestion, breathing, etc…). I’m going to be adding the video in this post (below) to this post too because I think it will be helpful. If you’d like to hop on the phone, shoot me an email and let’s schedule something. Cheers!
Hi, I’m 22 and I was diagnosed with subglottal tracheal stenosis only a few months ago, beginning of June 2018. It came from being intubated wrong after an accidental overdose. Unfortunately the dilations would only last for a week or two each time and caused my trachea to weaken and I’m now dealing with a trach tube and no voice.
Thank you so much for posting about your experience. It has given me a sense of hope I had lost the moment they told me I wouldn’t be able to speak. Ive been voiceless for about a month and a half (and when you’re 22 we have alot to say!) But they are already planning an eventual resection being done by doctor Spafford of UNM Hospital in New Mexico.
Reading your story brought tears to my eyes. I would agree that I would endure any amount of pain to speak again. And now I feel like I have some semblance of hope in front of me to do so.
Thank you so much for telling me about your situation, Milo! I’ll be thinking about you. Please reach out and stay in touch via social media too (@feedabrain)!
I also have problems with my trachea. I was diagnosed with idiopathic subglottic tracheal stenosis back in 2000, Dr. thought it was asthma. I said it’s my throat, not my lungs, he didn’t listen. I finally saw a specialist, Dr. tried to help but laser surgery just wasn’t working. Even the first tracheal resection did not help me.
I had surgery after surgery until 2007.
I ended up at MOUNT SINAI in 2007, Dr. Genden performed a tracheal resection even though I had one back in 2000.
He helped me more than he will ever know, and I am grateful beyond words.
I have seen him recently because breathing is still not normal, but I guess it won’t be ever.
Had a CT done and everything looked good.
I have not had any more surgeries, but still cannot exert myself (exercising) without breathing difficulties. I have also recently lost weight because I thought that would help. I was wondering if you or anyone else has experienced this problem?
Thanks for sharing your story.
Yes! I also have trouble exerting myself without getting very winded but I’ve never related it to my tracheal surgery. That is a very interesting point you make. What do you think is going on with you to make it hard for you to exercise? Looking forward to hearing from you. 🙂
I’m not sure what is going on.
It seems like air doesn’t flow freely to the lungs, when you are exerting yourself.