Advice on Questions to ask.

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I am looking to learn from your experiences. This Tuesday I go in for more tests, additional MRI and a CAT scan as well as follow up with my Otolaryngologist. I want to make sure I am asking all of the right questions. He thinks this is congenital and I have just now been diagnosed at age 50 so I am a little scared of what these additional tests will show. Here is what I know so far Profound hearing loss problem ear and some hearing loss in the other ear, Have also been suffering from long-term balance issues and fatigue. He is planning on a radical Mastiodectomy with facial nerve decompression as needed. Enclosure of the external auditory canal. He said I will take several months to recover and will need physical therapy for my balance as I will have no balance function on the right. He said I will need yearly MRIs as follow up ( chance of reoccurrence 30% ) and possibly a second look-see surgery in 6-12 months after surgery. Ok amazing people what questions do you think are most important to ask or that you wish you would have thought to ask before surgery. Thanks in advance.

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  • Posted

    I would ask how many surgeries like this has the surgeon performed? What is the outcome of those patients? 

    I would also research ENT’s that specialize in c-Tomas in your area. Choose two and have consultations with them, and see who feel the most comfortable with. 

    All the best. Rob

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  • Posted

    I would ask the doctor how many of these surgeries he has done.  Then find out about his personal recurrance rate.  Be prepared that the MRI and CAT scans do not show all of the involvement. 

    My son was 10 when he was diagnosed.  His surgeon only deals with ears.  His recurrance rate was less than 10%.  Don was on the table for 4 hours and has had zero regrowth. Radical mastoidectomy, canal wall down.  His hearing is almost none on the affected side with no vertigo.  All of the bones of the inner ear were destroyed, as was a major portion of the mastoid bone itself.  There is nothing to attach a prosthetic to for hearing assistance.

    My husband has had 2 canal wall down radical mastoidectomies. He, too, has no hearing in the affected ear. He does have exteriorized c-toma, but it is not growing.  He has massive vertigo attacks as well as Meniere's disease. On bad days, he uses Valium.  When it's not terrible, he uses dramamine.  He does use a cane.

    Honestly, with the doctor flat out saying there is a 30% reoccurance, I would get a second opinion.

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    • Posted

      Good point. Rob above also made the same point. I will be definitely asking about his track record but my sense is that this really is his speciality. He is a Professor at an excellent teaching hospital,  Oregon Health Sciences University.  They are ranked 19th in the country for ENT Specialities. This is where the surgery will be done.  I was excited to be getting a CAT scan as well as another MRI tomorrow as I was given the idea that a CAT scan would show much more clearly the scope of the damage. I have heard people say that the surgery usually takes longer than they say it will. I guess I am really nervous because he says it appears congenital which means it's had 50 years to grow. Yikes!!   By the way what is exteriorized c-toma?

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  • Posted

    I would do some research on the consultants available.  There are definitely specialist c-toma consultants out there.  Also ask about KTP Laser treatment which from my own research has better results with less damage to the hearing bones.   If KTP is an option and the hospital doesn't offer you have the right to a tertiary referral to a consultant that does offer.   Mr Fairley and Mr Hamilton (google them) both offer KTP Laser surgery and Mr Hamilton in particular has done some significant research in to the use of laser treatment.

    Good luck, I know that it is a worry time for you.


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  • Posted

    My husband has his first ENT appointment next week at OHSU for the same diagnosis. Which doctor did your surgery?  Any advice would be greatly appreciated.  Thank you so much. 

    I hope you are doing well.  Best, Debbie.


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