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I am a 44 year old teacher, wife and mother from Albuquerque, New Mexico. My story starts as many others I'm sure you've read. I had double knee surgery in 1985 when I was 16. I was symptom-free post surgery. In my early 20's I started having breathing problems which were largely unexplained. It started as a tickle that I couldn't shake and graduated to gasping for breath at the most inconvenient times. In 1997 I was diagnosed with asthma and given an inhaler for that. Nothing helped to stop the cough.
During a routine appointment with my primary care doctor in 1998 I was finally diagnosed with idiopathic tracheal stenosis. I was sent to an ear, nose and throat specialist who recommended "hyoid bone interposition" surgery to widen the trachea at its narrowest point with a tracheostomy to breathe during recovery. This procedure was done in 1999. I was scheduled to be decannulated in February 2000 but found out I was pregnant, so it was decided that I would keep the trach through the pregnancy. The following February I was decannulated and things were great. I started having troubles breathing again in February 2002, and in April 2002 I was re-trached for the remainder of my 2nd pregnancy.
I kept the trach in for 6 years, mostly due to fear of having to be re-trached at some other point down the road.
Fast forward to December 2008 when I decided it was time to figure out what was causing my stenosis and actually do something to fix it. My husband and I travelled to Boston to meet with an expert doctor and his team to fix my stenosis. We met with the doctor who did a bronchoscopy and said I was clear and should be fine to decannulate. We went back to the hotel where I decannulated myself and a few days later we went home.
I was breathing well for a few months and then started to feel the tightness. In June 2010 I had the first of seven balloon/laser dilations. In June 2011 we returned to Boston for a consult again with my surgeon who said when I got tired of doing dilations to call him and he would do a resection.
I underwent a tracheal resection surgery in June 2012. I had the surgery done in Boston and spent 12 days hospitalized with my chin stitched to my chest, with a trach for recovery until the 9th day and a t-tube for day 10 and 11, discharged on my 12th day.
The cost of this condition is tremendous. My medical expenses were in the hundreds of thousands of dollars. In addition, I had to pay for the travel expenses of traveling from New Mexico to Boston six times. This does not include the emotional toll this condition has had on me.
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I am a 58 year old male from Milwaukee, Wisconsin. I am in the process of obtaining medical records to understand the details of intubation during a thyroid surgery in 2008 and a subsequent intubation on 12/31/2013, that likely broke through a stenosis already developed in my trachea. I can forward the details once I receive and review the records of these instances.
While it appeared that the thyroid surgery in July, 2008 was a success and I did not have any noticeable recovery issues (no medicals needed to manage thyroid), my breathing slowly became more compromised over the years. I am a former smoker and had a final quit date in 2008, however I did not seem to achieve the levels of activity or recovery that others have mentioned when quitting. It did not make a lot of sense. I attempted to increase my level of activity, but instead of improving, I was becoming increasingly tired and developing a wheeze. Still, all tests indicated that I did not need medication to balance my thyroid. All tests of my lungs were clear.
(Way back in the 1994, I purchased a blue and gold macaw parrot, within 2 weeks of owning the bird, I was in the ER and was diagnosed with asthmatic bronchitis. Since that time, I have been prescribed rescue inhalers, inhaled steroids, and albuterol nebulizer treatments. When I quit smoking in 2008, I expected to need less medication, but instead the need seemed to increase. After the 12/30/12-1/15/13 hospital stay I will outline below, we surrendered the bird to a sanctuary and I immediately, was relieved from the need from all asthma medication. However, I attempted to receive relief again when my breathing became worse, as you will read. I understand we people with stenosis are misdiagnosed, but doctors need to learn to look beyond what present as lung issues, and start to also examine trachea issues. )
On 12/30/12, I was very short of breath and went to an ER. After no relief from O2 mask and then a bi-pap machine, I was told they would have to sedate (comatize) me and intubate with life support. I did not know what else to do as I was panicked and unable to breathe. Now I believe that there was likely a stenosis that had developed from the intubation during thyroid surgery back in 2008 and this instance of intubation on 12/31/12 likely busted through the stenosis. After 9 days in the sedated coma, I was brought out and spent a few more days in the ICU for observation. The only conclusion that the doctor made was that I must have COPD, even though all scans of my lungs were clear. He did not consider any other options. I was released home on 1/15/13. After removing the bird from the house, as mentioned above, I had a few weeks of clear breathing.
However, by the end of January, 2013, my breathing started to rapidly get worse. It felt as though I was breathing through a straw and was beginning to sound like Darth Vader. I followed up with my primary doctor, who suggested that this was an ENT issue. He referred me to an ENT doctor the next day, 2/20/2013 and I was rushed into surgery. I came out with a tracheostomy tube and was informed that the scope pictures indicated that I had a tracheal stenosis. The opening was only the size of a pin and had I waited any longer, I would have lost my already limited airway. The surgeon indicated that in addition to the newer scarring in the area of the stenosis, there was also some that appeared older.
For almost 2 months, I lived with the trache as my only airway and my communication was limited as I was not able to vocalize at all. While we had clipboards everywhere for me to write to communicate, I felt very isolated as it was not viable to carry on a conversation in this manner. I was also very limited in activities and barely able to leave the house as I had a constant need to utilize the suction machine to keep my trache free of secretions, so I could breath. This was a very uncomfortable and depressing time for me.
I underwent a tracheal resection surgery on April 15th, 2013. I was in the OR for about 7 hours as the operation was complicated by the location and amount of stenosis. I had the surgery done at St. Luke's in Milwaukee and spent a week hospitalized with my chin stitched to my chest, no food, no fluids and no speaking. He head was taped in a fixed position and the hospital staff had to receive specific instructions that I could not be moved or turned, which is unusual as they want to ensure the skin does not break down.
On May 8th-12th, I was back in the hospital as the stenosis was reappearing and the surgeon needed to dilate the area. On May 14th, it was discovered that I have a blood clot by my left clavicle. On May 17th, we had to call 911 as I was coughing up blood and felt like I was dying. In fact, I was dying and experienced PEA and had to receive CPR at which time 3 ribs were broken. Again I had to be intubated and comatized for several days. Again, it was decided to insert a tracheostomy tube to improve my airway. It was also discovered that I had developed an infection in my chest. Also, my left lung kept collapsing. Emergency surgery needed to happen in my ICU room to insert the trache. This time I was in the hospital from 5/17/13-5/31/13. Fortunately, this time I have periods where I can vocalize, however the toll on my body and spirit has been great and with broken ribs it is taking a long time to recover.
I will need at least 2-3 more surgeries in which they attempt to increase the opening in my trachea through laser and dilation techniques. I am hopeful that eventually I will be able to live beyond the limited life that is a trache tube and hope they are able to remove this and my body is able to maintain a viable airway.
The cost of this condition is tremendous. While we fortunately have insurance, the bills on one income are still astronomical. This does not include the emotional toll this condition has had on me and my family.
The cost of this condition is tremendous. While we fortunately have insurance, the bills on one income are still astronomical. This does not include the emotional toll this condition has had on me and my family.
We need to find a better method and provide education throughout the world as I believe there is more incidence of this issue that is known. People are being misdiagnosed and the treatment options and outcomes do not seem to be adequate. Please let us know how we can help others.
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my name is ________ and this is my impact statement i was taken to er by ambulance with severly high blood sugars un responsive was intubated for nine days was awoken to having issues laying flat voice very hoarse and sore throat given flovent and some other inhaler nurse said i had pocket of mucus in my lungs was unable to cough anything up i was intubated i am sorry have no idea what size tube was used . was sent to rehab 47 days later as social worker said i was leaving the hospital before i ended up with something else they had to deal with hmmm guess they knew went to rehab to recover about 1 month their started sounding like a freight train when i was in physical therapy they said oops shes got a strider ok well what is it and how do we make it go away they gave me breathing treatments and some kinda steroid and inhalers and some disk inhaler nothing worked progressivley from approx may 21st to june 11th they kept saying we have to take you to a pulmonologist never did i ended up INSISTING to go to er on june12th 2012 as i could not get air they were very mad at me and said this is a waste of time you will be right back its all in ur head ur having panic attacks well im sure i was and now still do maybe even ptsd from this horrible expereience needless to say i never returned to that rehab was taken to er scoped and immediae dye ct scan was preformed next thing i know am in icu on heliox and not allowed to move as they search for a surgeon to do an immediate tracheostomy they we unequipped to handle my case at this hospital well jefferson university took the case was taken and an emergency tracheostomy was performed with me wide awake airway was to small to intubate even with a pedi tube was in the hospital for 12 hours sent to another rehab who almost killed me from flooding my lungs with the humidifier again to go to er and hospitalized with pneumonia sent to another rehab no care plan no doctor was there 1 month and sent home still no care plan and no doctor to this day as jerfferson university doesnt accept my out of state medicaid i am tying to get a medicaid waiver to go back has been a year family doctor is very lax a dazy about everything end result i have a size 6 shiley non fenestrated tube in my neck no plan for care i cannot speak at all i have no prognosis as to my future i can hardly walk breathing thru this straw im on an oxygen therapy 24/7 no plan of care for that either as no treating pulmonologist i think i was expected to die and i didnt now no doctor wants to physically touch me as im an insurance risk so here i sit all because my windpipe was damaged from a bad intubation i did find a ent at cooper hospital willing to do trach changes but that is it i went 10 months with no change of the trach he will do the change every 3 months for me but if i want a treating doc he said feel free to look elsewhere for that. i can no longer work as i was a telesales rep and now i cant talk i do have other health issues and was able to get ssd i have nj horizon medicaid on a waiver from the state because was at a nursing home level of care thank you for listening i can no ;onger be the mom or grandmom i once was my life is a bit sad i am grateful to be breathing dont get me wrong but i miss the fun things
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To Whom it May Concern;
I am a 29 year old wife and stay at home mom to a 4 year old, a 2 year old, and am pregnant with our third baby due in November. I live in Regina, Saskatchewan, Canada. I can’t pinpoint the exact time that the scarring in my trachea happened, nor do I have any details from my surgical records. What I do know is that it was caused during one of two brief oral surgeries that I had in 2000 and 2002, both done by the same surgeon. We believe it was most likely caused during the second surgery because I had an episode a couple of days after the surgery when I woke up in the middle of the night struggling to breathe.
I lived for nearly 8 years without any major symptoms, but struggled with shortness of breath and light headedness whenever I tried to exercise.
I began having severe trouble with my breathing in 2010 about 6 weeks into my second pregnancy. My obstetrician was so concerned about my wheezing that he referred me to a respirologist. After having a spirometry test and pulmonary function test that both came back abnormal, the respirologist told me I did the tests wrong and just wrote it off as being pregnancy induced asthma and sent me away with inhalers. The inhalers did nothing to help my condition, so instead of being able to enjoy my pregnancy and play with my toddler I became housebound. We lived in a second story apartment at the time and I dreaded leaving the house because I didn’t want to have to carry my daughter or groceries back up the stairs. I couldn’t even go for walks because I would get so winded and light headed from pushing the stroller around the block.
After my second daughter was born my breathing improved slightly, but it only lasted about a year. Then my symptoms came back with a vengeance in January of 2012. Almost every person I met asked me if I was okay because there was a high pitched whistle and audible wheeze with every breath I took. I was at my family doctor every couple of weeks looking for answers, she referred me to a respirologist who couldn’t see me until October, I was diagnosed with pneumonia and took heavy doses of antibiotics and steroids which didn’t help, I was again prescribed inhalers which did nothing to help me either. We built a playroom in the basement of our new house for our daughters, but I didn’t like to take them down to play in it because I was afraid of climbing the stairs back up. I stopped going to my hair stylist because I nearly passed out after climbing the stairs from her basement studio with my toddler in my arms. I even felt weak and light headed from walking across the street to my neighbor’s house. Again I was basically housebound because I was afraid that I would pass out in public when I was caring for my children.
I went back into my doctor’s office in May 2012 in tears begging for help after we took a family trip to the Grand Canyon and I couldn’t walk more than a few steps without gasping for air even with the use of inhalers. Finally, after another abnormal spirometry test I got a referral to a different respirologist who agreed to see me at the hospital in July, I had another pulmonary function test, chest x-ray and CT scan and finally had a diagnosis, I was then referred to an ENT who had to send me out of province to see a different specialist because my they cannot treat tracheal stenosis in Saskatchewan. I had my diagnosis in July 2012, saw the specialist in Calgary, AB in August and my first dilation about two weeks later in early September of 2012. While I am very lucky that the medical costs are covered by our health care system in Canada, the cost of traveling to Calgary is only partially covered by our insurance so the costs of traveling for treatment definitely begin to add up.
When I became pregnant again in March of 2013 my symptoms returned. My surgeon wouldn’t do surgery until I reached 16 weeks gestation, so again I was struggling to breathe while caring for my two children (aged 2 and 4) until I could have another dilation. I got to the point that I was unable to do any housework and just my day to day activities were completely draining. My second dilation was done at the end of May 2013 and I am enjoying being able to play with my kids and be excited about my pregnancy this time. I will continue to symptom spot and I fear having to have another surgery during my pregnancy. I am also facing the reality of needing a tracheal resection sometime in the near future with three young children at home who depend on me very much and with no family living near us to assist.
My tracheal stenosis basically rules my life now, and greatly impacts my family as well. I am eternally grateful to my husband and children for being so understanding and supportive. It is incredibly frustrating to know that it is something that could have been avoided if someone had been more careful during my surgery and intubation. I hope that this statement can help to prevent others from having to suffer from tracheal stenosis.
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I am a 62-year old retired Business and Marketing Teacher. There were times in the past 23 years (which is how long I have suffered with Idiopathic Subglottic Stenosis), that I thought not only would I not make it to retirement, but that I would die.
I was first diagnosed when pregnant with my fourth child in 1990 after repeatedly complaining to my OB/GYN that I could not breathe. The referral to a wonderful ENT revealed the stenosis below my vocal cords. I will never forget his words: "I know what is wrong. No wonder you cannot breathe--this is way out of my league, but you are fortunate because there is only one person in the state of South Carolina that can handle this problem, and she is an Otolaryngologist at the Medical University of South Carolina right here in Charleston." I saw Dr. Lucinda Halstead on my 40th birthday, November 6, 1990, and had the first of many subsequent surgeries to "correct" the problem January 1991.
Dr. Halstead had told me that I may have to have the laser surgery to my trachea two or three times due to the extreme stenosis; however, when she started talking about the serious possibility of an open procedure, which would involve a trache, I sought two second opinions. The doctors at the Medical University of Georgia in Augusta, GA suggested a trache, which they explained could possibly become permanent. Imagine the horror of that suggestion to a woman whose family depended upon her income from teaching. I had four children at that time, ages 12, 11, 9, and 2. The livelihood of my family was dependent upon my continuing to work as long as possible. The doctors at Duke University concluded with Dr. Halstad's treatment, which told me I was, indeed, in good hands.
Over the years, I have probably had 50 surgeries on my trachea: some were MSL laser surgeries, some were balloon dilations, and some were a combination of both. There were times when I became so depressed, for a fleeting moment I had a suicidal thought; however, my family's need for me and my income, and my faith in God quickly put that into the dark recesses of my mind. There were times when I slept on the couch instead of with my husband, because I feared I would not make it through the night, and I was desperately trying to get to the next "holiday" so that I would not have to take time off from work to relieve my breathing issue. Once during a thunderstorm, I ran from our boat dock carrying my four-year old daughter in my arms, to the car with the rest of my family; the lightening was horrific, but more horrific to my family was my labored breathing once inside the car attempting to get a full breath. My husband insisted that I see Dr. Halstead the following week, which I did, and she put me in the hospital immediately for the surgical procedure the following day. I was close to death, and I vowed not to let that happen again.
I have a tendency to put the surgery off till I absolutely cannot stand it any longer, which is dangerous. I am a widow, and need to be around for my children as long as possible, but realize each surgery presents the risk of having a trache or worse. I have put on weight due to not being able to exercise when my airway is compromised. Thought the cause of my subglottic stenosis is unknown, I am fearful of any anesthiologist who does not pay attention and/or do his/her homework regarding my past history and risk of injury. Using a smaller endotracheal tube on women would should be the norm to avoid the possible risk of injury.
Tracheas are definitely not one-size fits all situations. I am only 5 feet tall, and used to be very petite. I understand that even tall people sometimes have this issue, so a standard to err on a smaller size tube would be in the best interest of female patients.
My ISS contributes to a number of other issues: people think I have asthma, constant coughing has contributed to a weakened bladder (slight incontinence), weight gain, people staying away from me because they feel I am "sick" or having something contagious. When my airway is compromised, I cannot walk very far, so parking is an issue. A handicapped tag has helped that problem, but I don't look like anything is wrong with me, so I do get looks. I sound like Darth Vadar when it is really bad, and on more than one occasion, someone has asked me if I needed help or if they needed to call medical assistance for me. It is very embarrassing to me and to my family.
I am urging you to review routine anesthesia practices that may place patients at risk. Stenosis issues can take place years after an intubation. I had four tracheal intubations prior to the stenosis being discovered. I understand that subglottic stenosis from overinflation injuries and/or improper tube size is difficult to prove; however, please consider more stringent measures to prevent this happening to others.
Thank you so much for your time
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