Question for olfactory neuroblastoma folks

dfs56
dfs56 Member Posts: 9
in Head and Neck Cancer #1

Hi I would like to get a second opinion for my treatment of ONB and wondered the name of the doctor and the hospital that

you were treated at.  I called my health insurance company and they said they needed the name of the doctor to see if it would

be covered.  Also, do you seek a head and neck specialist or a neurosurgeon first?  My local head and neck surgeon said that he has had 6 patients with ONB.  Is

this a high number or low?   Did any of you travel out of your area to get treatment?  Thanks. 

I have so many questions going around in my head!

Comments

  • Bsauls94518
    Bsauls94518 Member Posts: 32
    edited July 2016 #2
    Kaiser

    Believe it or not I received excellent treatment at Kaiser Hospital in Oakland CA.  My doctor was Dr Liang

    I did some research and found that a lot of the really good centers for head and neck cancer were back east or MD Anderson in TX was really highly thought of.  I asked my doc about this and found he had a lot of connections back east and did a rotation at Johns Hopkins.  He was quite up to date with my ENB so I relaxed and didn't get a second opinion.  I had a successful surgery in November of 2015 and they had clear margins.  I lost my sense of smell and taste but they both have come back.  It was a slow process, sometimes I thought I would get a whiff of something and I could tell by what part of my tounge would be getting sensations if I was tasting sweet, sour, salty or bitter.  Then it was almost like one day I noticed I could taste and smell everything.  At first it was subtle and now I fell back to my old self.  

  • Blasty
    Blasty Member Posts: 7 Member
    edited October 2016 #3
    Bsauls94518 said:

    Kaiser

    Believe it or not I received excellent treatment at Kaiser Hospital in Oakland CA.  My doctor was Dr Liang

    I did some research and found that a lot of the really good centers for head and neck cancer were back east or MD Anderson in TX was really highly thought of.  I asked my doc about this and found he had a lot of connections back east and did a rotation at Johns Hopkins.  He was quite up to date with my ENB so I relaxed and didn't get a second opinion.  I had a successful surgery in November of 2015 and they had clear margins.  I lost my sense of smell and taste but they both have come back.  It was a slow process, sometimes I thought I would get a whiff of something and I could tell by what part of my tounge would be getting sensations if I was tasting sweet, sour, salty or bitter.  Then it was almost like one day I noticed I could taste and smell everything.  At first it was subtle and now I fell back to my old self.  

    Kaiser

    Did you only have surgery or did you do radiation?

  • Bsauls94518
    Bsauls94518 Member Posts: 32
    edited November 2016 #4
    Blasty said:

    Kaiser

    Did you only have surgery or did you do radiation?

    just surgery

    Sorry it took so long to reply, I had zero margins after surgery so only the surgery.  

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