back to the balloon again

[ian anderson]

yep its all happening again folks my ts has returned with a vengeance and im goin back to hospital on 16th aug to have it dilated again just 5 weeks later after it was done is there anybody thats had this prob with ts? im not too upset about it just annoyd really hope everyone is fine Ian

[pberggren1]

I'm sorry to hear it only lasted a short while Ian. I hope you can hold out till the 16th. That is a long while away.

[elephant]

Ian, I am so sorry to hear that. I know JanW loves her doctor who took care of her stenosis. Hope they can find a better solution for this.

[Sangye]

Boy, that must be frustrating. I'm hoping that this one holds for a good long time.

[DEE]

hope you have a better time this time and it works out DEEx

[me2]

Ian I feel for you . I have not had ts but I have had ss. I remember reading up on ss and finding that the need for repeated treatment varied from 1 to over twenty. I just resigned myself that it was out of my control, the statistics were somewhat helpfull but ultimately irrellevant and I would just keep doing what I needed to to take care of myself . It is good news that we can keep getting the ballon as often as necessary. So far I have had one but I feel like I will not be too long to my second.
Hang in there. Eventually you will get a dilation that is your last one. I hope it is the one coming up for you. Do they use Mitomycin C for ts? They do for ss but I think not in every case. Also they do steroid injections on the inside. Does ts get those?
My doc seemed to think these drug were not conclusively helpful but still they used them.
I'll be thinking about you Aug 16th and putting out positve thoughts.

[ian anderson]

Ian I feel for you . I have not had ts but I have had ss. I remember reading up on ss and finding that the need for repeated treatment varied from 1 to over twenty. I just resigned myself that it was out of my control, the statistics were somewhat helpfull but ultimately irrellevant and I would just keep doing what I needed to to take care of myself . It is good news that we can keep getting the ballon as often as necessary. So far I have had one but I feel like I will not be too long to my second.
Hang in there. Eventually you will get a dilation that is your last one. I hope it is the one coming up for you. Do they use Mitomycin C for ts? They do for ss but I think not in every case. Also they do steroid injections on the inside. Does ts get those?
My doc seemed to think these drug were not conclusively helpful but still they used them.
I'll be thinking about you Aug 16th and putting out positve thoughts.

yes they used steroid injections inside trachea but not mitomycin c on me but will have to wait and see thanks take care buddy

[JanW]

Sorry to hear that Ian. I'm at the conference now - and my doc that I LOVE is here also. Why no myomicin? My doc balloons generally after actual surgery (scissors not laser) but I don't know enough about tracheal involement to know if it's an option for you. I have met people here who have had the ballon for the subglottis and are getting then monthly - needless to say their quality of life is vastly different from mine - I haven't had surgery since March. Maybe your doc could call Lebovics - he us the internationally recognized expert.