Subglottic Stenosis - What's the recovery from the surgery like?

[Sangye]

Ticklytoes-- if you search "Medical flight charity" in Google, you'll get lots of orgs. Many people use these groups, from children to adults. There are some heroic philanthropists out there. Some will also cover land transport to/from airports or hospitals, etc....

[JanW]

A lot of times corporations make room available on their private jets -- so it's a nice ride!

[ticklytoes]

thanks for the info guys! i called and checked with my insurance and they cover dr lebovics, and he takes my insurance too. Im excited! Im gonna see who will fly me up there! you guys are great.

[JanW]

Terrific! Can't wait until you have your appointment with him. Keep us posted and I'll bet he can get you off the trach!

[Sangye]

Whooya! I'm so relieved to know you're going to be in the best hands for this issue. You can trust what he advises.

[elephant]

That is great Ticklytoes. I too can't wait! You are in good hands.

[cathy2330]

Hi Jan, I am new on here and have read your story and it is very similar to mine. I also have subglottic stenosis , narrowest is 4mm. I also have it in my bronchi's right and left. Right side size of a straw, and left alittle larger. I have had 5 balloon dialations since Jan. It looks also as if my stenosis has been there for a long time as it is very hard and calcified as the doc says. Mine is hard because I see a thorcic surgeon for the bronchi and really he has been dealing with the subglottic area also but I am seeing a ENT on Wed. that has dealt with a few Wegs patients. The problem is the dialations are shrinking back very quickly . I have not had the chemo drug topically in the areas and I think I will mention that to see if maybe that would help to keep it dialated longer. Doc did try stents but could not get them in my area was just too small. I have read about the resection (which does not sound nice) but if it will permanently fix the subglottic area and help my breathing I would do. I know that it is really close to my vocal cords but i am going to ask the ENT if he would consider if nothing else works. I am starting on IV cytoxan on Mon. If the subglottic area gets fixed then I only have the bronchis. Doc won't do anything stents on that area and he said he cannot resection that area. Hope you are doing okay. Oh the last thing is my anca is negative. I just had everything else elimanated and this is the best guess that they have. Apparently with subglottic stenosis it is common to have a negative anca. It is also all down my nasal passages..