Author Topic: Looking for serenity heading for appointment at Mayo  (Read 3189 times)


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Looking for serenity heading for appointment at Mayo
« on: January 08, 2012, 10:36:18 pm »
My diagnosis is now about a month old.  I will see Dr. Link and Dr. Driscoll at the Mayo Clinic in 11 days.  I hope to find out then exactly which treatment options are open to me.  Then comes, apparently, the "hardest part" of this whole ordeal, at least from what I read here on the forum, namely making a decision.  I have appreciated reading the entries of the other newbies like me, as well as those who have gone down one of the many treatment paths.  I especially appreciate the way the moderators always remind us newbies to let our own story unfold and not assume we will be exactly like anyone else.  And, even though there is some scary stuff on this web site, it's also clear that many, many ANs are living with grace and even enthusiasm, no matter what their AN has given them.  That's incredibly hopeful to me.

These days I'm trying to nurture more serenity and trust as I wait for my own story to unfold.  Quiet time, walks, journaling, hugs, intimate conversations, all these are helping enormously. 

Thanks, again, ANA for being here. 
5-7mm AN L; diagnosed 12/9/11
As of June 2014 now 9mm
Still W&W


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Re: Looking for serenity heading for appointment at Mayo
« Reply #1 on: January 09, 2012, 11:50:41 am »
I did not go and see Dr. Link or Driscoll. I do live close enough to see them, however a Dr here told me not to go there. I know some people here had good results with them. I decided to send my info to House Dr. Friedman. I'm just waiting to schedule a date now. Dr. Friedman answers my questions fairly quickly via email. I'm not saying anything bad with Dr. Link or Driscoll I'm just saying to keep your options open. Please let us know how the appt goes.

14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012


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Re: Looking for serenity heading for appointment at Mayo
« Reply #2 on: January 09, 2012, 12:09:00 pm »
Hi.  I totally understand how you feel!  Great job on making a concerted effort to create serenity in your life as you move forward.  I hope the appointment goes well and that yo come to your answers and conclusions in the time rame you need.  Two weeks from today, we will travel for my translab which I will have two weeks from Wed.  I can say now, I am ready.  I couldn't say that last week, but I can say that today.  My fear has been replaced with calm anticipation.  Keep coming here if it helps.  Good luck and keep us posted.
1.6 cm AN Translab with Dr.'s Friedman and Shwartz with HEI on 1-25-2012.  I am doing great!  Surgery saved my life :).   Be brave, have a great attitude, and hire the best surgical team!!!!


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Re: Looking for serenity heading for appointment at Mayo
« Reply #3 on: January 09, 2012, 07:22:27 pm »
I agree with the hardest part being the decision. Seems like in our AN cases there is so much left up to the patient. Where as in other medical situations, the doctor tells you what you are going to do. I go for next MRI in February, and I am going to send info to House for evaluation. I just learned about doing that on here last weekend. Wishing you the best in whatever you decide.
6mm 08/11;   lost hearing by 10/11 & tinnitus;  growth shown 02/12;  more growth-now 1.2 cm 08/12;  Translab @ Vanderbilt Haynes/Thompson  11/13/12
J. Hildebrandt


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Re: Looking for serenity heading for appointment at Mayo
« Reply #4 on: January 13, 2012, 12:38:46 pm »
Though I am a noob also, it sounds like you are on the right track.  As I was advised by the wonderful ANA veterans on this forum, there is no substitute for research and opinions until you are comfortable with a decision.  I am going for CK next week at Stanford.  I am comfortable with this decision at this time and look forward to fighting whatever symptoms come my way while the AN dies.  If it grows, I am then prepared to take the final leap to surgery.

Those are my .02.  Good luck in your decision.

1.9 cm x 1.6 cm x 1.8 cm AN diag. 12/09/11
CK at Stanford 1/20/12

chloes mema

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Re: Looking for serenity heading for appointment at Mayo
« Reply #5 on: January 13, 2012, 01:12:11 pm »
Good luck with your decision and your appointment at Mayo.

To the list of "quiet time, walks, journaling, hugs, intimate conversations I have added healthy living in the form of a "clean diet", more water, and exercise.  I don't think it is coincidental that my tinnitus has calmed down some since this.  I also listen to meditation tapes.

Like chance1212 commented, so much of the final out come is laid at the feet of the patient.  I'm having a hard time with that but slowly coming to accept it.

Any way, good luck keep us all posted on your journey for that is what this is.

Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back