I am trying to get my initial consult with a neurosurgeon for the mvd surgery. My first choice was Johns Hopkins in Baltimore, but I was told today that they cannot get me in until August and the surgery could be much later than that. I am so disappointed. I want this over with. Before I tell them that I want to go somewhere else, I want to make sure this isn't gonna be the same everywhere. If it's the same, I will sticck with Johns Hopkins. So confused and upset. :(
hi Im in the Uk and have got an NHS appointment within 4 weeks But I did have to ring the Dr Sectrtery and ask when my appontment was going to be I know not much help to you but hope its useful
Thanks for this topic!!! So many of us deal with this ridiculous situation...the Dr.s don't seem to "get" how horrific the pain of Trigeminal Neuralgia is and so we wait & wait & wait just to get an appointment, sometimes just for a consult! I have been in your shoes so many times...hang in there! (Right now I'm in a 3 WEEK WAIT just to see my pain management Dr.'s PA!) I would suggest calling a couple of other excellent neurosurgeons - (they are out there) to see if you can get a consult sooner though! Wishing you the best!!! :)
I have spent all morning calling other hospitals and it is about the same way at other places too. Do they not get what kind of pain this is? I finally found someone at duke university that can see me by the end of March and then hopefully get scheduled for surgery within 8 weeks. That is the EARLIEST I could find. But now I am wondering if it would be better to just wait for the better hospital. UUUUGGGHHH! I am so stressed over this! I had a horrible night of feeling like someone was putting out their cigarette on my face and so I am really just wanting this to be over. But at the same time, scared of settling just to hurry it along. So after that rant of talking in circles, i still don't know what I am gonna do.
I feel the same , Although I have an appointment I am still looking at other surgeons as there could be a better one out there , I’m like you want o get this moving and get it sorted but then there are risks and I want the best so should I go to see others surgeons or be great full I have one to see , and the pain is like no other it’s nice no understand and be understood , I would say go see the dr in march and then make a choice after that you will get a feel as to what he is like then good luck and keep positive
I started to go through the Mayo-Go-Round!
I could not wait just because it was 2 states closer to home than the Dr. I really wanted
He got me in within a month I believe
He worked under the "inventor" of the MVD
He is a Guru who has done thousands of MVDs
Dr. Kenneth Casey - http://www.drkencasey.net/why.html
We emailed back and forth 3 times - did our "initial assessment sheets thru email
Booked a flight to Oakwood MI and that was Oct.
Did consultation day before surgery
Stayed in ICU one night
Stayed in regular room 2nd night
The man walks on water ! He is beloved in that facility LOL
I researched him for a year --- a year wasted on Trilept-HELL
Thanks everyone for the kind words. I ended up getting an appt with a neurosurgeon from Duke Univ. They were able to see me as early as next week. So nervous, it seems so real all of a sudden!