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blu4runner
09-04-2015, 11:36 PM
I want to see if any of you have been successful in getting a trach removed. I have subglotic stenosis and still have a trach after 3.5 years. I had the opportunity to meet with Dr Robert Lebovics in NY last week and he is willing to take my case. It would involve 12-18 months of procedures including dualation. steroid injections, and laser or crio ablation. In the end there is no guarantee that the trach could be removed but i am condidering having it done. Logistically its not great because I live in VA and would have many trips to NY.

Looking for success from any other members. THANKS!

JeanMarie
09-05-2015, 07:12 AM
I've no experience, but I think if anybody can do it, Dr Lebovics is at the top of the list. How about the vasculitis foundation's list of doctors, are there any closer to you? Good Luck with your decision.

drz
09-05-2015, 01:41 PM
I want to see if any of you have been successful in getting a trach removed. I have subglotic stenosis and still have a trach after 3.5 years. I had the opportunity to meet with Dr Robert Lebovics in NY last week and he is willing to take my case. It would involve 12-18 months of procedures including dualation. steroid injections, and laser or crio ablation. In the end there is no guarantee that the trach could be removed but i am condidering having it done. Logistically its not great because I live in VA and would have many trips to NY.

Looking for success from any other members. THANKS!

I would certainly ask him for his prognosis and estimate if it is worth while for you to pursue it. Most doctors will help you with any such difficult decision. Ask him about the downside and risks for going through such a procedure and his educated guess about success for you. How many cases has he done and what is his success ratio?

Do you have any family or friends near him that could assist you or offer support while you get care from him. Does his clinic or hospital offer supportive housing or other assistance to patients?. One of the nice things about Mayo is the extra supportive services nearby hotels and housing alternatives have available for the many patients of Mayo who often come from all over the world and often stay nearby for lengths of time while receiving medical care. almost all hotels have free shuttle service to Mayo several times a day.

Keep us posted on what you decide to do and your progress if you decide to proceed!

blu4runner
09-08-2015, 11:18 PM
I actually asked the DR what chance he thought i would have with the trach removal. He told me he could make that decision after the first procedure is completed and he had could actually visualize in the OR.
The hospital does offer an opportunity for my wife to stay in the hospital the fee is an additional $250 per night but it includes free parking so the rate is not bad for Manhattan in the city.
I will be making a decision soon currently I am dealing with my mom in last stages of Alzheimers so I probably won't do anything until I am able to get a caregiver for her Thanks you all

MikeG-2012
09-09-2015, 10:44 PM
I sincerely hope that they can do the procedure for you Victor!

Jaha
09-17-2015, 11:48 AM
Victor,
I truly hope that they will be able to do the surgery and all is well with you. I'm also wishing you all the best for finding quality care for your Mother.

Titus3:2
02-07-2016, 01:14 AM
Victor,you and I seem to be the unlucky ones.Subglottic Stenosis and Trach tubes.I have had my tube since 11/88 when my GPA diagnosis was made.Only two docs in that time pondered the idea of reversal.In 1994 Dr.Bruce Pearson at the Mayo Clinic and later on Gayle Woodson,when she was at the teaching hospital I am going to now.I have been using a trachoe tube for many years,and like them the best.Boston Medical use to sell them,but not anymore.I don't mind the tube,but miss swimming.Good luck.Keith.

blu4runner
02-09-2016, 01:51 AM
Thanks and good luck to you as well I wish it was gone but at least I can breath!!

Debbie C
02-09-2016, 04:54 AM
All the best to you Victor, that is a tough decision,but like you said he will know more after the first surgery,so you will have more to go one. Sorry about your moms health issue as well. You certainly have a lot on your plate now. Have you checked into that airbnb for a motel. I have looked into for other places but never used it ,maybe you might find something cheaper..........Good luck and let us know whats happening !

vdub
02-09-2016, 05:11 AM
I have to confess a bit of ignorance here Vic, but very interested as this might be the path I'm going down now.

Is the trach tube below your vocal cords and extend out your neck? Do you have to plug it to talk?

annekat
02-09-2016, 06:16 AM
Best of luck to you, Victor and Keith, if you pursue this further, and you, too, vdub, if it becomes an issue, which I hope it doesn't!

debra
02-09-2016, 06:47 AM
Victor, good luck from me as well... Wish you the best... Deb...

blu4runner
02-10-2016, 12:44 AM
The trach is below my vocal cords. I speak better if I plug with my finger or a passy-muir valve or cap. The good news is there is no pain associated with the trach once it is established. Here is a photo of what it looks like. Best of luck to you
2367

debra
02-10-2016, 02:31 AM
Blue, I never know what to call you! And this rhymed also... Just wanted to thank you, for this photo! Really kind of you, to share this with everyone... Good for you! I wish you the best also... Victor, again, best to you... Debra...

vdub
02-10-2016, 04:32 AM
I thought that's what it was, but wasn't sure. Thanks for posting the pic.

debra
02-10-2016, 05:21 AM
Blue, I gotta tell you, yes yet another rhyme! Since I have mouth involvement, and my throat feels weird a lot, a long with a voice change, I wasn't even aware of, till a family member told me, this has been a huge fear for me, but seeing you, and this, kinda changed that... Thank you so much for that! And again, thank you for sharing this with us... All the best, Deb...

Debbie C
02-10-2016, 07:37 AM
I have seen the ones where people have to put a machine to their throat to talk and it works off of vibrations ?? but I believe that is when there is no vocal cords. So I quess that is totally different. This looks like it would easily get infected being open like that. Very interesting. I truly hope all works out for all 3 of you guys. Vdub are they thinking of doing this to you as well ?

blu4runner
02-11-2016, 02:59 AM
I did have some issues with infections at one time but haven't had that problem for about 2 years. I do have a filter that I put on to keep moisture in my lungs and keep dust , pollen or other stuff out. Yeah my vocal cords are not damaged so that is a blessing

debra
02-11-2016, 03:32 AM
Blue, you're also an inspiration! Thank you, again for sharing this, and making it more real for me, and strangely enough, removing some of my fear... Not quite sure why? But it did, nevertheless... Deb...

blu4runner
02-11-2016, 08:00 AM
It took 3 trips to the emergency room telling them I couldn't breath and every time I was told they couldn't find anything wrong. My ENT did the scope up my nose and to my trachea and I was told I was 100% obstructed. I was given a 50/50 chance of survival but the emergency surgery at 2:00AM pulled me through and after that I got my diagnosis. Keep up the faith and best wishes!!

debra
02-11-2016, 08:06 AM
Blue, I'm very happy things worked out for you, and you're here inspiring others! Good for you... Yes I know I will keep the faith! Hopefully soon I'll get what I need too? Ya, something's gotta give, right? Thanks again for this, and take care of you... Deb...

Alysia
02-11-2016, 07:35 PM
victor, Keith and vdub,
I am not sure if the following info can help you but I will post it anyway:
our Gwen did a tracheal reconstruction surgery about 3 months ago. in short, they cut off the damaged area, put a stent there and cartilage (I think from the ribs, not sure) while she was on trach. then after the area recovered they took the trach out.
this is the surgeon who did the operation: Team | Harley ENT Practice (http://harleyent.com/guri-sandhu.html)
she did it at charing cross hospital in London. if you send her pm here and she is not back to you you can ask me to connect her to you, I can do it though the messenger.
I hope this link is working: http://discovery.ucl.ac.uk/1324556/1/1324556.pdf

debra
02-11-2016, 11:41 PM
Alysia, thank you... It's good to know Gwen is doing well. I remember her well, from years back... Hope you're good Alysia..And getting rest???... Deb...