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Thread: California ready to travel

  1. #1
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    Default California ready to travel

    Hello 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 for we genera pts 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

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    Hi daystarr,
    I'm sorry I don't remember where you are exactly- was it near Sacramento?

    I have enough experience with the illness and with subglottic stenosis to agree with your pulmy 100 %. I think a lot of the things we get procedures for can be handled by doctors with general competence in their specialty but having studied SGS extensively, talked to some of the vasculitus foundation consultants at conferences, I can say that it really requires someone with direct and extensive WG experience to get the best outcome.

    I would suggest contacting one of the consultants from the VF web site : http://www.vasculitisfoundation.org/...l-consultants/

    Dr Lorenz and Dr Lebovics are absolute tops in this department. When I needed help with stenosis I contacted one of the consultants directly and asked for a recommendation of someone reasonably near me (sorry , I can't remember who I asked) and was pleased to get a recommendation. Ironically, it was the doctor I was already seeing at the University of Washington in Seattle.

    I have since had two or three more dilations (can't remember , it was quite a while ago) and made many visits to this same doc. He and his team are wonderful. My point in rambling on about this is that I was lucky to find someone really , really good who was close to home and part of the medical center where I was already going. I was willing to travel to Cleveland too if I had to but it was great that I didn't have to.

    I'm going to guess that there are probably great doctors like mine sprinkled around the country and there might be one near you.

    You are right not to just settle for someone. Wait until you find someone that your are happy to go see. The procedure is really not big deal as procedures go, and I felt so much better afterwards I can't even adequately express. I went home the same day each time.

    Keep us posted on your quest for a great doc. There might be someone close to you here on our site that could recommend a doc. If you lived close to Seattle I could recommend a doc with zero reservation- and this comes from lots of personal experience. I hope someone close to you has some personal experience to share too.
    Last edited by me2; 11-06-2014 at 03:17 PM.

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    I'm in central California. I'll travel anywhere for the best doctor to dilate and treat my stenosis. Thank you me2 for all the info you have shared. I will most definately share my adventure. Feeling positive!

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    Go to Cedars Sinai.

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    Dr Lal...ENT @ Mayo Phx. Or just the rheumatology staff at Mayo. Mayo puts together the team themselves for your treatment, no running around, just show up and wait...lots of patients from all over the world there.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    If you can find someone close to you it is the best. You will be making a lot of trips for this. I just started with issue last year since then I have had 6 surgeries. Once you operate on that area it grows scare tissue back and then you have to go and remove it. It can slow down for some people but for me it has not. My doctor is awesome, but I'm from Indiana. If you would like more info let me know. I would recommend my doctor to anyone! He has saved my life many many times!!!

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    Well I went to UCSF and met with surgeon Katherine Yung who I was referred to by Dr Sharon Chung from the Vasculitis Foundation. They said my airway is only 30% open and I need surgery. She is going to make a few small lazer cuts and then dilate. She will inject steriods and then there is the question as to if we use mytomiacin c. Does this all sound like the same procedures most of you have experienced???

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    My first dilation was several years ago and I remember learning at that time that many people had been damaged by treatments using lasers. When I talked to my doc (recommended by a VF consultant) he agreed that we would not use lasers. Minutes before they were going to wheel me into the operating room they had me sign a consent form. I read the form and on the form it mentioned that I was giving the doctor permission to use a laser.

    I freaked out and said I wasn't going to sign it. The nurse said if I didn't sign it I wouldn't get my surgery that day.
    So, in a creative moment, I hand wrote a note "No lasers!!!" , intitialed it and then signed. When I next saw my doc he had a good laugh over what I did. He said the wording was just there to give him latitude in case he thought it benificial.

    So, I just moled all over trying to find an article that mentions lasers with SGSS and Wegener's and was not successful.
    I did find a fantastic video by Dr Lorenz who mentions lasers and all the rest of the considerations in SGSS surgery for Wegener's. Apparently , there are now lasers that can make fine cuts and not do the large amount of scarring damage that was done in the past when using lasers.

    From the video , it looks to me like they used to just try and cut away all the tissue using a laser which ended up leaving significant scarring that was then prone to closing up again.

    My doc was able to make the fine cuts without a laser , I don't know if this better or not. The concern before with the laser was that it caused damage around the incision due to the heat itself. This may not be the case anymore.

    Also he mentions the use of Mitomycin C in the video and my doc agrees that it is a bit of a toss up and inconclusive how helpful it is. What IS important (as mentioned in the video) is the steroid injections.

    Here is the video: https://www.youtube.com/watch?v=BifdvorrUJ8

    You are going to feel SO much better after the procedure. I am happy for you knowing what a relief it is.

    PS- It does seem from watching the video that the procedure is going to vary depending on whether your stenosis is just a webbing or if it is a longer section of the trachea. I'm guessing it would take a bit more work to open a longer stenosis than it would just a webbing.
    Last edited by me2; 11-21-2014 at 03:38 PM.

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    Thank you, thank you, thank you!!!!! Yes this has help me so tremendously. I have emailed my surgeon some questions that the video brought up and I hope they respond. I'm afraid of laser but I do think it will be necessary. I am counting the days. 10 to go. I've had a 50% stenosis for about 20 yrs it's now about 70% so time to get it done. I'm so tired of being short of breathe not to mention darth vader twin. I think you are a lot like me when it comes to protecting your airway. Every dr, surgeon, nurse, anesthesiologist that ever took care of me for any surgery got an ear full of how narrow my airway is and please please take precaution and use a pediatric intubation. It's been hard but I did it. So now j just hope it's not a long stenosis and everything is easy and I can get on with my life without any re stenosis. Crossing my toes, legs, fingers, eyes. Whatever it takes. Hope you are doing well me2. I'll keep u posted!!!

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    What awesome news for you - well now that Kirk has shared his experience.

    I just glad that you finally got to see someone who knows a thing or two about WG.

    I hope the 10 days go quickly for you
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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