Need any advice available
 

I am a 44yr old female born with spina bifida form called mylomeningocle and
also had hydrocephalus in which a shunt was placed. I had revision of my shunt in 1995 and was fine up till now.

Had recent MRI's was told now have Arnold Chiari type 2, a tethered my spinal
cord and slit ventricles, 4 discs in neck are pressing on spinal cord and one of
four should be removed. I am from pennsylvania looking for advice as well as
any good neurosurgeons anywhere willing to go.

I have been to a neurosurgeon that took two hours to get to and told me to
live with my situation of constant pain refused even medication also told me
any neurosurgeon that would operate on my head or spine is crazy by the way a two hour drive to see him and time he spent with me was less than twenty minutes.

what part of Pa are you from,, I;m from Pittsburgh area,, had surgery last year fir CM1,,, I can tell you who to stay away from but I know one that might be able to help you

need any advice available
 

I would welcome any help at all and thank you for any help. I have been rejected by several leads I had through my family doctor. I was given a
doctors name from the University of Pennsylvania but the doctor is in same
pratice as one i was rejected from. I also cant believe doctors are allowing
staff that answers the phone to just turn you away you cant even get an
appointment with the doctor without going through someone who has no
clue whats wrong with you or everytime you call you have to refresh their
memory why you called the day before. I can understand having to send
tests and such but then to be turned away without a full history or even
the actual mri pictures is not right.

I was told by the U of P doctor that the office turned me away to see
a neurologist and they only were going on the written MRI report which
had no mention of the Chiari Malformation, Slit Ventricles, or Tethered
spinal cord all was found by a neurosurgeon who did not want my case.

I am in pain daily, dizzy, severe headaches last neurosurgeon refused even
medication told me to learn to live with it if I could function I would do it.


Any advice on who to stay away from or where to go will be such a help I had to move back with my parents to PA from New York due to my boyfriends
work hours and me being alone I want my life back so any help from anyone
would be more than welcome.

Thanks
Feel the burn and hope your doing well

Brandi

Dr Bajani,,, associated with UPMC in pittsburgh,, neurosurgeon,,

Update & Thank You
 

Thank you Feel the Burn

I am updating today I now have lost my family doctor in which I was getting
help with medication and getting to doctors. I got the letter Saturday he is
gone as of Wednesday so two day notice. I now have to wait till October to
see any doctors due to the covering doctors are not able to give referals
also may not be able to get some of my medications as well so its not a
good day at all I am lost


Brandi