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ian anderson
05-22-2010, 05:19 AM
hi fellow weggies ive now been told ill have balloon dilation for my ts any info on this and has it worked for anyone

JanW
05-22-2010, 11:07 PM
I had a balloon dilation on my subglottic stenosis about two months ago. However it also involved laser surgery to cut into the scar tissue and open up the whole area. Is that what they are doing with you, or are they just dilating it and seeing how long it stays in the open position? I think there was someone on one of the WG boards (maybe here?) who had that done and was basically having to get it done every few weeks because it doesn't hold.

ian anderson
05-23-2010, 12:13 AM
as im led to believe they are only doing balloon dilation my surgeon doesnt want to do laser as its quite damaging however if its scar tissue i dont know what he will decide he wont know till he sees what it is thnx ian

JanW
05-23-2010, 01:07 AM
sorry, I mispoke. After checking my notes my surgeon actually cut into the scar tissue with micro scissors, not laser. What does your surgeon think it is if not scar tissue in your trachea?

ian anderson
05-23-2010, 05:14 AM
well ive only seen him the once if its scar tissue balloon dilations no good and he is not keen on surgery he said if its scar tissue and he operates what if it comes back more ops? just dont know where he is gonna gobut its me that counts right thnx ian

me2
05-23-2010, 05:31 AM
I"ve had dilation done a few months ago and it has held quite well so far. No lasers, just dilation and mytomycin C. I went home after the procedure. Now, months later, my breathing is not as good as it was right after the procedure but it is WAY better than before. I am very happy with how it has worked out. Before the procedure my breathing was quite restricted.
I know the odds say I will need it done again but I would not be so scared of the procedure as I was the first time. In fact I would look forward to it because it brought me so much relief and improvement. For now, I am still doing ok and my understanding is that every case is a crap shoot. No guarantees on outcome. I think each case can be quite different .
The good news is that the procedure is repeatable and it is WAY better than having no options at all. I wish you the best,

ian anderson
05-23-2010, 07:29 AM
thanks a lot buddy for your post on balloon dilation i feel a lot better than i did after meeting with my surgeon hope everything works out for you too thnx ian

JanW
05-23-2010, 07:56 AM
If the operate by cutting your scar tissue they end up doing it three or four times at least, but it's nothing to be afraid of. The procedure doesn't even leave you with a sore throat (you can see me talk about it on here -- there's a thread on here somewhere where I posted right after mine -- it was easy-peasy).

coffeelover
05-28-2010, 12:07 AM
I am with Jan,
It was easy peasy and I have had numerous surgeries to get rid of scar tissue. The most difficult part is the not eating or drinking 12 hours before surgery!

Jan, it sounds like you and i are in the same boat
Lisa

annette06
05-29-2010, 10:41 PM
Hello
I have had WG for the last 9 yrs, localised in my nasel space ,also effects my hearing.Last october it was found my trachea had gone very narrow,they couldn't lazer it (wrong type of tissue) so had baloon dilatation,had this done twice with just sedation but this was too tramatic ,had it done 3 times under general anestetic. This procedure only last about 3 wks before my traches is narrowed again, so they are looking at putting a stent in.Has anyone else had a stent in and is this a more permanent thing
Look after yourselfs
annette06

JanW
05-30-2010, 12:26 AM
I had the balloon dilation done in March along with my ENT cutting into tissue (not laser) to make the opening bigger (mostly subglottis -- only a little tracheal involvement). Only thing I know about stents is that there is a risk of granulomas growing around the foreign body, which is why they are not done frequently. Are you in the US? My doc is Robert Lebovics, a leading specialilst in these kinds of surgeries, and he is in Manhattan.

annette06
05-30-2010, 07:19 AM
Hya janw
Thanks for your reply. i am from the UK. Does Dr Lebovics have a E.mail ,it would be interesting to compare treatments between US & UK surgeons.

JanW
05-31-2010, 12:24 AM
Hi, Annette - Not sure what the email is (and I do not that he isn't an email guys -- he has said as much in a conversation with me), but his phone number is 212.262.4444.

gwenllian111
06-12-2010, 02:46 PM
I've had over 20 balloon dilatations - my breathing is a LOT better than it was. In fact my last op was 18 months ago. My TS is still there, not cured, but I have a better quality of life now.( I also had part laser.)