Saturday, July 14, 2012

To resect or not to resect?????

I have no reason why I made that appointment with Dr. Senders, my current doctor in April.  I honestly think that God's plan for me was to receive this information, after a decade suffering with ISS, it was time for good news.  The information Dr. Senders delivered to me had me blubbering with tears of joy - THERE IS A PERMANENT SOLUTION!!!!   He mentioned Tracheal Resection so nonchalantly - does he not understand this is an answer to my prayers?  He almost said it as a side note. "Ahem, excuse me???   Sign me up!"  I said.

I'm not exactly sure why I decided not to consider Dr. Senders himself for the tracheal resection, as he has given me very competent care - probably because his specialty is cleft lip, and becuase of all the horror stories I have read about ISS patients getting into the wrong hands for this surgery.  A rare disease calls for the most skilled surgeon in this exact condition.  So my friend Dr. Matt Forrester hooked me up with an appointment at Stanford.

I was left confused after my consult at Stanford Hospital......the news was devastating, yet not unexpected.  I am so very appreciative of Dr. Shrager's very honest advice, but upset nonetheless.   I kept it together until we returned to the waiting room.

"My advice is to continue with the balloon dilations, that's what I would do if I were you."  Shrager said.  My list of prepared questions is now rendered useless, he does not want to operate on me.  Why does the Chief of Thoracic Surgery turn me down? He fears the laser surgeries I was subjected to may have left 'the field' in a condition that I would have less satisfactory results.  He also fears that the exact location of my subglottic scar might be too close to my vocal cords.  "I have doubts that I am the surgeon who can do a flawless job considering you have had almost a dozen laser treatments." were his exact words.

Dr. Shrager did give me a glimmer of hope, in fact he highly recommended Dr. Mathesin of Mass General Hospital if I were to pursue the resection.  Dr. Mathesin trained Dr. Shrager, and he has complete faith that when it comes to this surgery, Dr. Mathesin doesn't fear proximity to vocal cords, OR previous surgeries.

Now the tough part - making a decision to continue with dilations or go to Boston.  I think the decision would be easy if I didn't have two beautiful children.  My place here in this world matters immensely in their lives.  I cannot even begin think about not being around for them - it's too painful.  But then again when I think about the relief I would feel post resection - as log as I am among the 80% of patients who have great results.   I would feel so much peace to think I wouldn't have to return every year for a dilation.

5 comments:

  1. Hello! My name is Kate and I also have ISS. I am currently under the care of Dr. Robert Lorenz at The Cleveland Clinic who specializes in this condition. He says that the most important part of the balloon dilation is the injection of steroids at the sight. This keeps the stenosis from returning. People come from all over the country to see him. He also does the resection procedure with excellent results for those who need it. Please contact him! He can help you.
    http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=4447
    Best wishes to you.....

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  2. My name is Andrea, I have been diagnosed with idiopathic subglottic stenosis since I was 9. I am now 17 and have had about 10 balloon dilations and laser surgeries. I am scheduled to have a resectioning the second week in july this summer...I am terrified but I want a permanent fix so I'm prepared to undergo this surgery. If anyone has some positive information to share I would very much appreciate it. I could use as much support as possible...

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  3. Heather,
    Did you have the resection surgery? If so, how are you doing? I had tracheal resection for my stenosis three weeks ago and...unfortunately, I woke up with stridor and coughing yesterday. I have an appointment with my doctor on Monday and I hope they can give me some steroids or do something to prevent re-stenosis. I know you say in this blog that resection is a permanent cure, but I can tell you that is not a given. In fact a NIH study says that 8% of trachea resections wind up with either a failure or partial failure with some restenosis occurring. I really would like to know how you are doing so please email me at Michael.williams@netbusiness.com

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  4. Hi Michael!

    You are correct, thinking of it in percentages makes the odds seem great for a resection - but there are anywhere from 5 - 20% of people who do decide to resect may have restenosis occur. It seems there are some doctors who can boast a lower rate of restenosis somehow.

    To answer your question - I have not had the resection. I am going to have a dilation on June 12th and also be assessed for a resection. I really don;t know if I feel confident enough to go through with it even if I am a good candidate for it.

    -Thank you for your Comment!

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  5. Hi Heather,

    I was just diagnosed with this condition 3 days ago. I am scheduled for a CT scan next week to see the severity and will receive recommendations after that. The symptoms you describe are right on. As you were, I have also been diagnosed with everything from Acid Reflux, Asthma, Anxiety...etc. I was relieved to finally get a diagnosis after having this build up gradually for probably 6-8 years. I am at the point now where the slightest exertion leaves me gasping for air. I talk on the phone all day long for a living and I can hardly do it anymore. I get winded by the end of every phone call.

    I am glad I found your blog. It offers some great and honest insight.

    I hope you are doing okay. I noticed it has been some time since you have posted. Did you ever opt for the Resection? How are you doing now?

    Thank you for caring enough about this condition to share with others.

    Sue

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