Went to Stanford on Thursday

[Mei Mei]

Hi all,
Went to Stanrod on Thursday and the Maryland neurosurgeons he said were all wrong, that my MRI's were "Scary" and I shouldn't have surgery.   Now I am home in Maryland and wondering who to believe.   The GW doc wants to operate, the Ehlers Danlos doc wants to operate, but the DC doc and the Stanford doc say no to surgery.    The ENT said I have a bilateral vocal corn paralysis but the GW doc said no.    Who to believe.   I am going to see the Ehlers Danlos Doc tomorrow and the ANAUSA doc   Dr. Tew on July8.    Who do I believe  The opinions are all conflicting.   The bottom line is that the patient makes the designs .   How do we make the deacons.
Mei Mei

[nftwoed]

Hello Mei Mei;

   All I can offer is I would place opinions of more advanced specialities above an ENT's advice. My personal feeling is a surgical opinion is a bit above his speciality.
   Re, Dr Tew, I've heard some good things re, him.
   Re, "scary"; That seems poor wording by a medical professional. It helps remove objectivity from your choice and places it in the subjective.
   Is it an actively growing tumor?
   What are the potential outcomes of surgery for those pro-surgery? And those opposed?

[Mei Mei]

Hi,
I don't know how to find out all the outcomes and in my case at Hopkins they were all skewed.  When I told the Hopkins doctor that the plastic surgeon at Gtown was see a lot of his patients, he got upset so to speak and said I want names, Give me names.  Hopkins patients don't get headaches.      The darling of the Ehlers Syndrome group was the one who said my MRIs look "Scary
"   and the reason I chose Hopkins over Friedman at HEI was that Hopkins said I was in danger of getting a stroke from the tumor.   So instead of W^W we jumped on the table.    I don[t come here often as my heach and neck hurt from being on the computer.
Thanks for comments.]MM

[nftwoed]

Hello;
   Seems yours isn't a plastic surgery situation and personally, my feeling is real surgeons don't care for their intrusion in AN pts lives except for maybe some facial reanimation.
   If you had bilateral vocal chord paralysis, it seems you wouldn't be able to talk. Can you?
   Is Dr. Jacklar still at Stanford?
   I'd hate to decide between Niparko/Friedman; Hopkins vs. HEI, but would think re, surgery, a stroke is always a possibility and Hopkins Drs pts. may get head aches unless they have become Gods.
   Sorry, I'm getting a little confused here as to your initial situation. ( Where is that posted? )
   Can anyone else on the group help out here?

[Jim Scott]

nft ~

I don't have the time to relay all of Mei Mei's issues since her AN surgery at Johns Hopkins in late 2009 but if you click on Mei Mei's name (on the left side of her message) it will take you to her profile page and you can pull up all 1,200 or so of her old posts, which will explain her journey over the past few years.  She has had a very hard road, I assure you.  I just hope she can find some relief, soon. 

Jim