i can only explain my situtation to see if this helps....
i went to audiologist who ran tests and forwarded me to an ENT. i met with him the next day and he ordered the MRI. a few days later, i got a call from him stating that i had a growth. He had called my PCP and he recommended that i talk to a CK dr.
i met with the first CK dr and later decided to go with her treatments. teh ck dr said that she and her nurse were there for my care - they would take care of me unless a specialist was needed. i learned later that she set up a follow up appointment with an ENT. on the first treatment day, things were not a we had discussed so she decided to replan the treatment and set the next day to do it. at the second day, she said tha tshe wanted me to see a neurosurgeon before proceeding. i ran form her as i had lost confidence - but her plan was to be primary dr to take care of things.
i called ENT who referred me to 2nd CK center. this CK dr had me to see a neurosurgeon before treatment. Neuro dr said follow ups were to be done by CK dr. the neuro approved the CK treatment plan as well as CK dr. on first treatment, neuro authorized the set up and told tech to proceed. the next 2 treatments were started by the CK dr. neither dr was availble to talk any day of the treatments. i had failed to ask enough questiosn about how / who were to take care of me .... i ended up asking questions to a PA. 2 months later the CK dr schedueld a follow up MRI, had me in and tried to say to see nuero dr from now on. i told him that neuro dr sdaid to follow up with CK dr. he said no problem.
about 2 months later, i am having heaches, etc and call to CK dr --- i am told to see neuro dr. i did.
at 6 months after CK, i am loosing hearing. i think my aid is bad... go to audiologist and find that it is hearing - not the aid.
i call neuro dr and his office says to see him in a week and a half. i explained the situation and got no return call after asking for one from dr or nurse. i call ENT, he is booked for next 6 weeks - no exceptions. i call ck dr and am told to see neuro. on the cyberknife support site - Dr Medely says to stir it up and get in to see a dr. i get into see CK dr. he orders MRI and tells me to come back in a about a week. on return, he reads mri report and tells me to see neuro surgeon - plus starts me on steroids. he says tumor is huge!
to neuro dr who says that the mri report is wrong. just a few places where decimal point was off, etc. he acted as if he wonders why i am there. he just tells me how much better off i am with CK rather than surgery. he said tha tmy hearign is just gone - it will get worse - not better.
3 weeks larter, i have the appointment with CK to talk about the steroids ----- i had stopped taking after calling the dr. he asked questions and said that he never had to see me again - see the neuro dr. i asked about the loss of hearing and he looks at me funny. i finally say that i will find an ENT. he just agrees.
to me the after care leaves much to be improved upon. i have written to the hospital that owns the Ck machine and that the neuro and CK dr work for. .... the neuro dr called to say that his staff failed to relay the message and this is why he did not call me back. but i am still to find my own dr and find out about the hearing loss. i find that i get no package of total care at St John's of Tulsa, OK!!!! i have told them the same thing - including a letter to their CEO.
so you gave me teh opportunity to air my thoughts --- it appears taht there is no consitency? but i do warn others that ask or that i have the opportunity ot tell .... ask a lot of questions about after care before deciding what to do and where! i ddi not explore this well enough?
be your own advocate - once there - do whatever you have to ....
carter
