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Thread: Tracheostomy reversal

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    Default Tracheostomy reversal

    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!

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    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.

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    Quote Originally Posted by blu4runner View Post
    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!
    Knowledge is power! Wisdom is using it to make good decisions!

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    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

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    I sincerely hope that they can do the procedure for you Victor!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    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.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    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.
    "Trust Thyself ".R.W.E

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    Thanks and good luck to you as well I wish it was gone but at least I can breath!!

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    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 !
    Life isn't about how you survive the storm, but how to dance in the rain !

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    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?
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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