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18 year old digagnosed today SURGERY UPDATE

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robynabc:
I can talk about this much.  My son has a large tumor.  He has no hearing loss at all but we went in because he had numbness on his mouth.  THe MRI shows a large.  4.5 x 3x 3 tumor.  THey could not believe he had no hearing loss and no other symptoms.   I am not ready to talk about  this much because we have not seen the surgeon.  My question is-  our ENT is sending us to a doctor- Here he is. 

http://www.uchsc.edu/otolaryngology/faculty/Jenkins.html

According to her he has done the most schwannomas in the country.  From reading on this sight that is most important.   Has anyone heard of him?  Thanks in advance for the info.


 I am afraid of hearing any horror stories becuase he is so young.  I am for the most part staying pretty positive and don't want to change that right now.

Thanks,

http://www.uchsc.edu/otolaryngology/faculty/Jenkins.html

chelsmom:
Hello Robynabc,

I'm so sorry to hear about your son.   Last June my 17 year old daughter, 5 days before graduation, was diagnosed with a large AN.  It's a very scary time but you are right in having a positive attitude.  I'm not aware of the surgeon that you've mentioned.  Chelsea went to UCLA and although she had many complications I felt she was in the best of care and now 10 months later she is doing great. 

Please know that this is a wonderful place to come for support and information.  My thoughts and prayers are with you. 

All My Best........Michelle

robynabc:
My son is supposed to graduate in 3 weeks.  He may miss graduation.  Thank you so much for your post,  I am glad to hear that he is not alone in being so young with this.  But I am not glad she had it too.   Thanks again.   

chelsmom:
Hi Again,

You might be suprized about him getting to graduate with his class.  Chelsea surgeon agreed to let her walk with her class and was going to do the surgery June 30th but her legs went weak and she fell just 2 days after graduation.  She was admitted that day.  I would at least ask to see if he could walk with his class.  All her doc's felt that this was too important for a her to miss out on and were sure she would be OK.     

ppearl214:
Hi Robyn and welcome. I'm sorry to hear you all are going through this journey, but I have to admit... you really found a terrific support network here, esp. in the case of Michelle/Chelsea.  This past year, we have traveled the journey with 3 younger folks (ok, younger than me!) between the ages of approx 17 to 25 and we cheer everyone on as loud as we can. 

I read the link and Dr. Jenkins seems to have quite an impressive backround.  Do you know how many actual AN surgeries he has performed and his is office willing to give you patient references?  To me, I found those questions key to any form of treatments (of my health situations) that I have had.  Asking here is also a terrific choice and hoping someone can chime in with reference for you.

I have to send a shout-out to Michelle and Chelsea as well... been so long since I personally have seen them here but send my best huggles, as always.

Robyn, again, welcome, to you, your son, your family and friends.

Phyl

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