I had an appointment with the neuro that has started coming to town...
I was excited and in hopes he would have an answer to my headaches and
save me the many miles and hours of travel going to Nashville ... I had
to put it off a week because I had to keep my week old grand baby
when her mom went back in hospital with complications ... but
rescheduled and happily waited for the big day
When I got to appointment it took an hour to get back in exam
room and there was only on patient ahead of me and one man
waiting ... the nurse did the usual BP ...temp and stuff like that and was
taking a list of medicines I have taken in past 2 weeks...
Doctor Quack comes in ... he looks at history that I had filled out
and starts asking questions ... questions he should have had
answers to from the charts Nashville doctor was suppose to send ...
he tells me he never got them... so I am a bit pissed off at
Nashville office thinking they had dropped the ball ... I asked
for them to be faxed to him several weeks ago... I pull out his
card to double check the fax number and the nurse tells me
they don't have a fax machine in the office yet...
so I give him oral history of past 4 and a half years and ten
details of headaches and other problems since surgery ... he asks
me to take hair down and is feeling my skull and looking at the
scar which is super sensitive in spots and feels like alcohol in a cut
and toward ends it is numb... he stands behind me and puts
hands on back of head with thumbs under and behind ears...
he says I think I found one problem... you have a defect in the
shape of your skull on the right side... I can lay my thumb in
the indentions
... I am thinking
ARE YOU FOR REAL...
he had his thumb in the dent left from removal of bone .....he
said something about they must have used the Retro-sigmoid
approach and I say no they took the Trans-labyrinthine aproach...
he said he had not heard of this way ...
he then starts questioning me about hearing ...I tell him I am totally
deaf on right side and he asks if I am sure ...I tell him the ear drum and
all cochlear stuff is gone and yes I am sure ...
he has me close my eyes and test me with tuning fork... he asked if I had tried
any hearing aids to help... I tell him with no working ear parts that it would
be useless except for the BAHA implant that conducts sound through bone
by way of a screw implanted in bone behind deaf ear...carries sound over to
hearing ear... or the Trans Ear ...he says he had not heard of this ...
and is still skeptical about my hearing ...he blind folds me and taps tuning
fork and puts handle end against my head on deaf side and asks
if I can hear it ... I say yes and he said I thought you
were deaf in that ear...I pull off blindfold and just look at him...
catch my breath and say I can hear it because the sound is going
over to good ear... he just goes hmmmmmmmmmm and
writes something down...
he asks about the tingling and facial numbness I have ... I tell him
it isn't bad just aggravating ... along cheek bone and jaw line are
most effected and I have funny feeling on right side of throat when
I swallow and sometimes choke ...also still have a bit of metal
mouth taset... he says this has nothing to do with the surgery and
I have possibly worked myself into a state of panic attacks that
brings on symptoms... and says since I smile that it has nothing to
do with the facial nerve...all in my head and may need
antidepressants and therapy to learn to not obsess with this and
cause myself injury ...
he asks about the dizziness problems and how it impacts my life
and why do I think I have problems ... I say probably due the fact
I only have one vestibular nerve... and he asks me why I am
missing one ...
... I remind him of the AN surgery and that
it was surrounded in tumor and had to be removed ...and he asks
if I am sure ...
he then starts checking reflexes and says I didn't have good
reflexes in my kness... I tell him I know ...it was part of the nail
patella syndrome that I have ...he asks me how I know I have
this condition...I tell him I was born with it ... he says so a doctor
didn't tell you and I say no... he says so you say you have it just
because you think you do and not on the authority of a doctor... I tell
him I have had treatment for joint pain associated with it off and on
all my life , but no one has really diagnosed me ...I just have it ...
I show him my thumbs and their lack of nails and the split nails on my index
fingers ... he tells me he has seen cases where children have at early
age chewed fingernails to the point of the nail not growing and he
thinks this may be why my thumbnails are gone and I just don't
remember having them... I didn't even show him my crooked arms
or mention I have a daughter with no thumbnails and no knee caps..
I was afraid he might think she ate her knee caps ... and other daughter
with over sized elbows and knee caps...I guess she stole bone somewhere
while inutero
and I saved the best (or worst) for last ... during all this the nurse is sitting
there taking notes ... when he was doing the reflex testing he was
poking at my eyes and actually touching eye balls with a rolled up
tissue to test blink reflex... I am sitting on the exam table and he
leans in and his crouch is against my knee and he is erect... I pull
my leg back and he steps back and says sorry ... the nurse giggles...
he stops poking my eyes and moved on...
he proceeds to tell me that I probably hadn't needed the surgery but
since it had been done there was no way he could really tell... said too many
doctors are cut happy...first one I went to with AN wanted to go right in...
one who finally did surgery was of the opinion watching and waiting was appropriate
and that is what we did for 3 years
by the time I left my blood pressure was up ,my head was pounding ,
I was dizzy , ready to puke and ready to cry... he did prescribe
600 mg of neurontin three times a day which is the medicine my
primary doctor was going to try me on but was waiting to see what
the neuro had to say...this seems to be an excessive dose to me
and I have not started it ...
before I leave he tells me about this miracle juice ...XanGo or something ...
he sells it and says it is a big help to many people
with many conditions ...may help me
and he tells me that if I want to try to get disability he can probably
get it for me ... I want my head to not hurt and not to be abused
by a doctor ...although I have my doubts on his authenticity
as I am leaving the receptionist says I need to pay the co-pay ...
I am thinking why? but go to counter to pay it ... get there
and hand her my medical debit card and she hands it back and
says right now they can't take debit cards or checks only cash
because the office is not fully set up and they can't run them... I
left without giving them a dime ...don't plan on giving them any
I think at some point I went into shock because I am still trying to
figure out why I sat there the whole time ...
I met mom for lunch and didn't eat because I couldn't swallow ...she
was scared that I was going to pass out and so was I ...I was staggering badly
and head was miraculously not pounding but was kinda tingling all over as was
my face and forehead...I think from blood pressure being jacked up...mom wanted
to take me to ER but I wouldn't go ...if my doctor had been in the office I would
have gone to him but Wednesday and Tuesday he is off...probably should have
gone to see his partner ... but needed my regular who knows me inside out ...
I think I depend on him too much
I was going to try to get groceries but couldn't figure out what I needed even
with a list and left the store with milk , eggs , a box of fruit loops and
toilet paper... I came home and BP was 148/107 ... I took two Tylenol and curled up
in the recliner and slept for 5 hours...
That was on Wednesday... Thursday I had to be at school for spelling bee...
my 5th grader is advancing to County...
Friday I went in to see my regular doctor...
Complaint has been filed... made my doctor miss lunch...third
time I have caused him to miss a meal... missed dinner to catch
Hannah and was coming to check on me on his lunch break and
ended up catching Sarah who decide that it was time to make an
entrance even though we thought she would be an evening baby ...
I should get him a gift card to a nice restaurant
with enough for him and his wife to go out to eat...
anyhow.... we talked forever and laughed some ...today the whole
thing is almost unreal feeling... like a bad movie I watched...
he apologized over and over and was teary at times ... I feel
guilty sometimes for taking up so much of his time ... but I don't
guess he minds ... he calls me on weekends when I have
been having a bad week to check on me and then we just talk...
last week Hannah's basketball team was playing his sons team and we sat
together talking ...about anything aside from any medical stuff...
mostly him and my husband talking farm ...I keep him and his family in
my prayers ...without him I would be a frigging basket case...
BCBS emailed me a list of 40 neuros within 50 miles radius... didn't
have time to go through and narrow it down enough before I saw
him... so will do Internet searches through the BCBS site as to
which specialize in pain control and post craniotomy care ... then
Monday will call the 10 or so I plan on narrowing it down to ... and
get him the list sometime before the office closes to see which he
has any info on and who he thinks would be best... the one we
looked at before who wanted all the interviews now says he is not
taking new patients at this time ... search goes on ...
the quack sent a letter to my doctor saying alot of what he said to
me ... he mentioned that
the patient may have hypochondriac
tendencies and thinks she suffers from a rare genetic bone
disorder... he tells this to the man who caught my babies who have the disorder
too and saw that they had it even before I did... kinda hard to miss
the lack of thumbnails and crooked arms and such... he says I
am blaming too much on the surgery and need to get over it ... I
gave it the year the surgeon said it would take for stuff to clear up...
most things are bearable ... the headaches are not something I am
willing to just live with if we can find something to help... if we can't
cure them I at least want them manageable
as I talked to doctor my BP was going down... I didn't cry as I thought I would
and felt relieved by the time I left ...when I first got there it was 140/90 and the
third time he took about an hour and a half later it it was 127/67...
he had done some more research and thinks lyrica would be better
for me due to BP medication I am on ... he gave me 4 months worth out of
his samples... but I am not starting it for another 2 weeks ...
I am having a slight wheeze from BP medicine and he wants to see if
my body adjusts and stops the wheeze ... if it does then we will
start lyrica and see... literature says atenolol can cause wheezing in
asthma patients and that in most cases you adjust and tolerate it ...
crossing eyes I get past the wheeze and that I can take lyrica and it be
my miracle ...
A friend suggested going in to quack again with a mike... I would like to get
him on tape being so incompetent and insulting but couldn't take another visit with
him...
