What the heck...
 

I saw the neuro recently. Prior he had sent me to an epi. from where the surgery was done. He wanted the MRI if possible & a "fix" w/ the drugs. MRI can't be done as I said years ago. Epi. added amounts of some & said to get off the pheno. So now the neuro sees the records & opinion & doesn't want me off the pheno. He claims it looks good in the paperwork, but he saw me for 4 days w/ a tube down my throat & couldn't breath if they laid me flat.
Why the heck did he send me if he didn't take their opinion & they probably weren't told about the 4 day tube other than what was told from us & paperwork. Obviously, little came outta me. I was "awake" briefly when they yanked it out, but was back in my own little world for another day.

Back to pushing the VNS. The rug keeps being pulled under my feet. :Slip:

Flopper--
is it possible you could stick with the Epi that your local neuro referred you to ? If you feel the epi has more experience and that his/her goals and suggestions are more in line with your views, try to continue seeing him/her.

If it isn't possible for you to continue seeing the epi, try asking your neurologist if he could call and speak to the epi and get any miscommunication between them cleared up, having them work out a treatment plan and the like.

No matter what-- and this is very important-- remember that you have the final say in your body, the treatments, choices and make whatever descions YOU feel are best. Its your health at stake !

:) L2L