Wrongful Tracheostomy Surgery Patient Explains How The System Failed Her

[@xochxrry6857]

My voice is messed up due to my doctors. My voice was so raspy and I could barely talk after I got my trach out. After a while I started to be able to talk and then over the years I’ve started to be able to talk louder and more clearly. But to this day my voice is not as it should be. While they were working on my neck they messed my vocal cords up. I have a noticeable scar on my neck and a dent in my chest where they took a rib, but I think they took a few more ribs because it is a big indent. I’ve lived with this all my life and I feel they didn’t do as good of a good as they could have because everyone always said I was going to die and they thought I would too. I’m 16 and I have bad body dysmorphia as a result of all of this and I’ve tried taking to my doctor but he refuses to do anything until I’m 18. He said that the surgery is not major but he wants to be “safe.” I’m so sick of this bs lol

[@carrieobrien5624]

I'm sorry, keep me posted on how you are doing. I might have this. I was misdiagnosed with asthma.

[@nicolebowland]

Yeah same that messed up my voice too and probably why I have tracheal stenosis where I could barely catch a breathe while coming up the stairs or even while talking, 😫it’s so annoying with my raspy horse voice, people always think I’m sick 💀 they wanna do a balloon dilation thing to widen my airways so I could breathe but it’s only temporary idk what to do and if it’s even worth it if it lasts 3-6 months, I’ve dealt with this my whole 20 years of life so idk I don’t know if it gets worse later on? Probably not 🤔

[@nicolebowland]

@@carrieobrien5624 same they thought I had asmtha too & gave me inhalers that I barely used & the doctor even threatened me with an oxygen tank lol even tho the problem was with my windpipe not my lungs, I’m surprised they thought it was asmtha since I got covid in November and that didn’t do anything with my breathing, sooo clearly it would of ruined my lungs even more if I did have asmtha

[@nicolebowland]

I had it done when I was such a baby I don’t remember thankfully but 😫

[@nauadev]

@@nicolebowland I was misdiagnosed too, I had this(tracheal sub-glottic stenosis) after 1 week of through-mouth ventilation, I don't know but you have to talk to professionals and have tracheal surgery, they will burn the airway with so called laser cutter(using HO2, I really cant remember) and widen it. after several months they will take out tube!

[@UshioKiss]

I have idiopathic subglottic stenosis. I am 23. I am mixed white and asian. I need to know why I am like this. I'm having a third surgery next month because my narrowing keeps coming back. It is debilitating and I am miserable and I always sound like I just ran 10 laps. I am FUCKING 23. I am a healthy, ordinary weight. I already was born with asthma and I didn't know what was wrong for the longest time. I am so scared all the time. I want my life back. No one should have to experience this.

[@nauadev]

i have been struggling with this for nearly 8 years, I was 15 when I first had subglottic stenosis( because of 1-week mouth air ventilation), now stenosis is over but I had 3rd surgery for closing tracheotomy. I think if you are not HAVING tracheotomy after widening your windpipe(airway) it keeps coming back, there is a tube called T SHAPED made out of silicone(rubber), after tracheal tube you should have to have this t shaped tube, You should have to talk to your doctor about it. if you need any help regarding the tube get in touch with me !

[@power4522]

I’m 21 and was born with subglottic stenosis but I had it fixed a year ago ( with a tracheal resectioning ) so now I can breathe just fine but my voice still hasn’t fully came back

[@pamelayarbrough4974]

May God be with you. Your just a baby. God bless!!

[@pamelayarbrough4974]

@@nauadev Thank you and God bless

[@theresamcsorley8876]

I was just diagnosed with this in Dec.

[@andreasiow9453]

Are there any resources available for individuals who are going through the same situation.

[@dwayne938]

My wife is going through the same thing she just had her 4th surgery. If you have found out anything more or any update on any new info on the disease if you could please share. Thanks

[@cruzbenny76]

I understand that woman

[@EvelynFOLEY-ut7mx]

Hi my name is Evelyn iv a collapsing Teachea they put in steant, but unfortunately, my body rejected it. I ended up in ICU

[@HayatKhan-mp8oc]

Please response me this tube benefit for man or not? My brother accident happened doctor say tomorrow fix the tracheotomy tube and my brother foot can't working fast time no any feeling now feeling ok but working not ?

[@highwaysouth9015]

Evn i got tracheostomy after 1 month it closed completely no issues but it looks like some dent or small hole n got that scar doctor said it wll heal in 1-1.5 years

[@pamelayarbrough4974]

I wish. I'm going on 5 years. Still have a hole in my neck.

[@highwaysouth9015]

@@pamelayarbrough4974 is that realy a hole 😐 I mean when u drink water is there any leakage issues

[@pamelayarbrough4974]

@@highwaysouth9015 unfortunately yes. It is a small hole but yes I have leakage from my lungs and my stomach

[@highwaysouth9015]

@@pamelayarbrough4974 leakage frm lungs n stomach 😟😐 I did nt understand

[@pamelayarbrough4974]

I can breath also through my mouth and nose and last time they took a scope in my throat they punctured my vocal cord. It's been four years since my throat cancer. I wonder if it will ever close and if they can remove some scar tissue

[@nauadev]

I have been trying this thing called Mölnlycke Mepiform onto my scar, you can try i think, it is like silicon tissue

[@pamelayarbrough4974]

@@nauadev Did yours close after using that and could you let me know what to do about mine?

[@pamelayarbrough4974]

When they removed mine it never closed

[@nauadev]

Yeah I feel you, mine also is not healing, there is tiny hole, and here I am searching for answers that how to care to close

[@nauadev]

Did it close now? How did you care?

[@pamelayarbrough4974]

@@nauadev it hasn't closed. Been four years. It's small but it still leaks like when I drink. I think they messed up putting my trach in.. of you find anything out could you let me know? Please and thank you. The last time I went to the rest nose throat doctor he shoved a scope down my throat with the largest scope he could find and pinned me to the chair. My husband watched and said it was a nightmare. They want my vocal cords removed and that really made them mad. I speak and breath so I'm at a lost what to do. If you have any ideas please tell me. Thank you. This hole in my throat makes it harder to breath. I must want it out. Let me know what you do and you may ask if they can cut out some scar tissue in it

[@pamelayarbrough4974]

@@nauadev not close after four years

[@pamelayarbrough4974]

@@nauadev me also If you find out of they can get rid of the scar tissue will you let me know please and thank you