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Thread: Some nuggets from yesterday's checkup at Cleveland Clinic

  1. #21
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    Quote Originally Posted by daystarr8 View Post
    Always glad to here good news with WG. I need to find the best doctors to address my subglotic stenosis. I'm going to travel to the best. I will be needing dilation. Any names of doctors who do this and do it routinely would be helpful. I have read a lot of good posts about Cleveland clinic I just saw local pulmonologist and his advice was to find the best. Any advice would be great! Thanks
    daystarr8: Dr Robert Lebovics specializes in ENT surgery for vasculitis patients. He's in New York City and several members on this forum are his patients. He has been operating on WG patients for many years, is a really nice person, and on the board of the vasculitis foundation as well.

    I heard him speak at a workshop last month about tracheal stenosis surgery. He's also involved in fascinating research on constructing new trachea using a 3D scan of the patients trachea, printing an identical copy on a 3D printer, seeding that with the patients stem cells and doing a transplant. Sounds like science fiction? Won't be tried in humans anytime soon, but he and his colleague showed pictures of pigs in whom these techniques have been tested. The little piggy with a constricted trachea went from 50 lbs to 185lbs within a few weeks of the transplant.

    That aside, all the best to you.

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    Glad to hear your check up is good, such a smart lady. Villa Forte has me on the 15 mg of mtx/pred 5 mg as trying to get to zero due to bone damage in my hips. I have had so many colds from the Grand/Great Grandkids that keep having to stop the MTX. We are going to leave for Naples soon as need to get out of the cold and away from so many kids unfortunately. I am having some problems with feeling sick to my stomach, once and awhile get sick have you had that issue?

    Mary

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    Cleveland Clinic Dr. Ville-Forte was the best thing that has happened to me in years. I found that I was going to a Remy here that shouldn't be treating Wegs so life is getting better again. A second opinion never hurts in my case I now have a new doc that knows how to handle wegs!

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    Quote Originally Posted by MaxD View Post
    daystarr8: Dr Robert Lebovics specializes in ENT surgery for vasculitis patients. He's in New York City and several members on this forum are his patients. He has been operating on WG patients for many years, is a really nice person, and on the board of the vasculitis foundation as well.

    I heard him speak at a workshop last month about tracheal stenosis surgery. He's also involved in fascinating research on constructing new trachea using a 3D scan of the patients trachea, printing an identical copy on a 3D printer, seeding that with the patients stem cells and doing a transplant. Sounds like science fiction? Won't be tried in humans anytime soon, but he and his colleague showed pictures of pigs in whom these techniques have been tested. The little piggy with a constricted trachea went from 50 lbs to 185lbs within a few weeks of the transplant.

    That aside, all the best to you.
    That is amazing information! Thank you for Sharing

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    Mary when I was on prednisone and cyclophosphamide in the mornings when my stomach was empty I always felt nauseous. Once I ate it was better hope this helps

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    Thanks I will try eating right away as I don't always do that and see if it helps.

  7. #27
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    Quote Originally Posted by daystarr8 View Post
    Always glad to here good news with WG. I need to find the best doctors to address my subglotic stenosis. I'm going to travel to the best. I will be needing dilation. Any names of doctors who do this and do it routinely would be helpful. I have read a lot of good posts about Cleveland clinic I just saw local pulmonologist and his advice was to find the best. Any advice would be great! Thanks
    Did the vasculitis foundation offer any clues on where to look? Looking at the specialities of their consultant might be good way to start as well as calling any larynxologist you can find. I think this list of authors for an article on treating subglotic stenosis might also be a good place to start. Article: Medscape: Medscape Access

    Contributor Information and Disclosures
    Author
    James D Garnett, MD Director of Voice and Swallowing Center, Associate Professor, Department of Otolaryngology-Head and Neck Surgery, University of Kansas Medical Center

    James D Garnett, MD is a member of the following medical societies: American Academy of Otolaryngic Allergy and American Academy of Otolaryngology-Head and Neck Surgery

    Disclosure: Nothing to disclose.
    Specialty Editor Board
    Anthony P Sclafani, MD Director of Facial Plastic Surgery and Surgeon Director, New York Eye and Ear Infirmary; Professor of Otolaryngology, New York Medical College

    Anthony P Sclafani, MD is a member of the following medical societies: American Academy of Facial Plastic and Reconstructive Surgery, American Academy of Otolaryngology-Head and Neck Surgery, and American College of Surgeons

    Disclosure: Aesthetic Factors, Inc. Salary Consulting; Meditech Medical Enterprises Consulting fee Independent contractor
    Francisco Talavera, PharmD, PhD Adjunct Assistant Professor, University of Nebraska Medical Center College of Pharmacy; Editor-in-Chief, Medscape Drug Reference

    Disclosure: Medscape Salary Employment
    Robert M Kellman, MD Professor and Chair, Department of Otolaryngology and Communication Sciences, State University of New York Upstate Medical University

    Robert M Kellman, MD is a member of the following medical societies: American Academy of Facial Plastic and Reconstructive Surgery, American Academy of Otolaryngology-Head and Neck Surgery, American College of Surgeons, American Medical Association, American Neurotology Society, American Rhinologic Society, American Society for Head and Neck Surgery, Medical Society of the State of New York, and Triological Society

    Disclosure: Nothing to disclose.
    Christopher L Slack, MD Private Practice in Otolaryngology and Facial Plastic Surgery, Associated Coastal ENT; Medical Director, Treasure Coast Sleep Disorders

    Christopher L Slack, MD is a member of the following medical societies: Alpha Omega Alpha, American Academy of Facial Plastic and Reconstructive Surgery, American Academy of Otolaryngology-Head and Neck Surgery, and American Medical Association

    Disclosure: Nothing to disclose.
    Chief Editor
    Arlen D Meyers, MD, MBA Professor of Otolaryngology, Dentistry, and Engineering, University of Colorado School of Medicine

    Arlen D Meyers, MD, MBA is a member of the following medical societies: American Academy of Facial Plastic and Reconstructive Surgery, American Academy of Otolaryngology-Head and Neck Surgery, and American Head and Neck Society

    Disclosure: Medvoy Ownership interest Management position; Cerescan Imaging Honoraria Consulting

    Another source of self proclained experts is: http://www.chop.edu/conditions-disea...ottic-stenosis

    If they work with Merkel in Philadelphia they might also know a bit about GPA. I think it would take a few phone calls but I might also call the centers for GPA research I listed in another recent post and ask about your condition to see if they have experts on board in their center.
    Last edited by drz; 11-14-2014 at 03:16 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Wow drz that's a list!!!! To answer your question. Dr Sharon Chung San Francisco who is on the Vasculitis foundation was recommended so I called her and left a message on her voicemail. She called me back in 3 minutes!!! She recommended two drs is ENT that she works with often and she highly recommend I see one. So I have an appointment on Monday 11/17 to see dr Katherine Yung I'm still not sure if I'm in a flare or if it's the damage in the nasopharyngeal area and the subglottic area. I was tapering prednisone and once I got to 15 mg the symptoms got worse again but at 20mg I'm better. Not where I was a few months ago but better. I dont know I guess an experienced eye will look down there and hopefully know something more certain. If I need treatment/meds I want to get started so life can continue. But if it's stenosis only let's get the dilation done. I'm ready for what ever the answer is. I thank you so so much for all the information you have shared with me. If I feel the dr Yung is not the right fit I have many options here to research. I hope all is well with you. I'll keep joy and everyone posted after Monday.

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    Had my six-month checkup with Dr Villa Forte today. All continues to be well with me. I asked her about getting off mtx. She recommended against it because her research indicates that those who go off mtx have a 40% chance of having a flare within a year. So, the slight fatigue for 36 hours is a small price to pay.

    I will resume my pred taper. I've been on 3 mg/day since last September. Hope to be off altogether in 3-4 months.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  10. #30
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    Quote Originally Posted by Pete View Post
    Had my six-month checkup with Dr Villa Forte today. All continues to be well with me. I asked her about getting off mtx. She recommended against it because her research indicates that those who go off mtx have a 40% chance of having a flare within a year. So, the slight fatigue for 36 hours is a small price to pay.

    I will resume my pred taper. I've been on 3 mg/day since last September. Hope to be off altogether in 3-4 months.

    Hi Pete,

    Glad to hear your check up was good with Dr. Villa-Forte. I see her May 11th, we are going to drive to Cleveland on our way home from FL as been over 6 months. I am down to 2 mgs and can't go lower every time I even go down to 1 1/2mg it effects me. I ask Villa-Forte about that and she I said some people never can get off it just low. I have been on it for over 9 years as a no one knew what to do before dx.

    I started back on same treatment as you last August, she told me then she most likely will keep me on it. I am doing much, much better so will deal with it.

    Mary

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