- Short areas of scar tissue may not require many procedures to fix them, or if they do, may only require 1-2 procedures.
- Long areas of scar tissue tend to recur after procedures such as dilation and laser treatment, often around 6-9 months following surgery
I suppose surgeons who do laser and dilation surgeries are hopeful that you may be in the first category, only requiring a couple procedures. I was baffled as to the reason they continue to do maintenance surgeries and withhold information about tracheal resection. I think ENT's should do a series of three balloon dilations and if it doesn't hold up, refer to a surgeon for tracheal resection. The progressive nature of ISS is that it will keep returning time after time. So why the maintenance surgeries?
I almost said, "Sign me up." But then I knew I needed to call my mom. She has been my biggest advocate through this whole ordeal - she would have an opinion here. She did a ton of online research, and decided that this tracheal resection was a grand idea. Seeking advice, I called Dr. Matthew Forrester, resident at Stanford. He spoke with the head of Thoracic surgery at Stanford University..........AND I HAVE A CONSULT WITH THE MAN!! I'm nervous but exited too.
Here's the anatomy of the tracheal resection: A very, very, very, practiced Thoracic surgeon will actually remove the stenosed portion of your trachea, and sew it back together. Tracheal resection is so far the best alternative to cure the stenosis completely. The narrowed part of the trachea will be cut off and the cut ends of the trachea sewn together with sutures. Brace yourself, they go through your throat, and you will have what they call a collar scar. Totally a non-issue as far as I'm concerned, as long as it assures me I won't have to have another surgery. This will not be performed by your ENT, and it's a much bigger deal than laser or dilation surgeries..........it is a final surgery with lasting results!
I can't wait to share more after my consult with Dr. Shrager.......until then!!
UPDATE: October 2012
Well it seems this dream cure might not be in the cards for me. I now understand what a big deal this tracheal resection surgery is...... you have a four inch incision, a drain, and chin stitches to hold your head still for a week, and that is really really scary to me! At this time I have decided not to go through with it, I am way too scared that I may not be one of the lucky people who receive flawless results and have a permanent solution.
Hi HeatherAnne, I was recently diagnosed with this as well. I found out a few months after the birth of my son. I struggled throughout my pregnancy with him to breathe and was diagnosed with everything from bronchitis to asthma and several things in between. Often times I was told that maybe it would improve when my baby was born and was a strange complication of the pregnancy. Well, 5 months after he was born, I was still short of breath and trying to figure out how I was going to keep up with my little one once he started moving around. I was winded upon the smallest amount of exertion, to say nothing of the complete exhaustion I felt as well. I was referred by my primary to an ENT doctor who diagnosed the stenosis in my throat and told me to see a specialist. Thankfully, I live in MA and did some research and found that MassGeneral is a leading center for treatment of this condition. I have been seing Dr Wain since. It's only been 4 months since my diagnosis and I have had two dilation procedures with a flexible and ridig tubes. During my visit for the first one, I found out that I was pregnant again. I'm told that the hormonal environment is probably causing the condition to worsen and shorten the length of success of the dilations. I've also been informed that I'm a good canidate for the resection surgery. Prior to this diagnosis...I had never had any major health concerns, had no surgerys...had never been under anesthesia. Now it's been 4 months and I have had two of these procedures and feel like I'm looking at at least two more before my baby is born and I can begin to consider the option of the major surgical option that should be a permanant solution. I feel for all you've gone through over years with this condition because I've only been dealing with, at least for the time I've known of it, for a few months and it feels as though it has taken over my life. Thanks for sharing your story and thoughts and giving others a place to do the same.
ReplyDeleteHello Aimee!! Thank you so much for posting your story. That's fantastic how close you are to Mass Gen. I will most likely be having a resection at Mass Gen in the next year or so, unless I chicken out again :( I'm really sorry to hear that your restenosis seems to be rapid following each dilation. I bet that does at times feel like it is ruling your life. May I make some simple suggestions? For me these help a lot in between dilations - raising my mattress or using two pillows, avoiding dairy, and exercising. Mucous seems to make the narrowing even more narrow so lying flat will worsen the stridor. Dairy also thickens the mucous membrane. I really hope you have a facebook account so you can join Living With Idiopathic Subglottic Stenosis. It's such a wealth of information ans support.
ReplyDeleteGod Bless and best of luck in your recovery!!
Heather