I had a very unusual experience. It probably starts like most on here.
I was getting severe migraines where I would literally get sick from
them. I then started to get numbness on one side of my body. I went to
doctor after doctor and they all told me it was just a normal migraine
nothing to worry about. Then one day in class my neck and head started
twitching. I went to the health center on campus and again they told me
it was probably just a normal migraine however they were going to
perform some tests just in case. I had an eeg which showed up normal
and an MRI which showed some suspicion. My neurologist wanted to make
sure so she gave me a CT angiogram which proved I had an AVM. Up until
this point, you are probably wondering why I said it was an unusual
case. Well when I went to my neurologist after the angiogram she had
informed me that in 1991, the year I was born this AVM was found in an
MRI. My mom was in the room and she looked very confused. She said “my
daughter didn’t have an MRI in 1991” and the neurologist said that in
my records it showed that they did an MRI and found this MRI. This
seems extremely unusual and highly illegal. Anyway so I am now in the
process of TRYING to get a neurosurgeon at John’s Hopkins University
which is proving harder than it should. I do not know too many details
of my AVM yet and what my treatment will be if anything.
Regarding the “proving harder than it should” aspect (getting with an neurosurgeon), you may be experiencing something that I suspect many of us did at the outset … an AVM diagnosis is made and so a neurologist appropriately shunts you off to a neurosurgeon. But these surgeons, especially at major academic medical centers (like Hopkins), are insanely busy folks who are hard to pin down for a consultation. They may do non-urgent clinic appointments only a day or two a week, if that, so if your case doesn’t involve the need for urgent or emergency attention it can take weeks to get in. This inevitably leads you to think (as I did) “I have this thing in my brain and I have to wait weeks to be seen – are you kidding?” A lot of us have been there. The key is to find a good one and get on their calendar, and then do homework and research so that when you do have the consultation you are already somewhat educated and informed about these things – that will help you make optimal use of the precious time you have with them. But most of all take everything in stride … all will I’m sure eventually become clear. And try not to let the weirdness of the past business (the 1991 MRI business) interfere with your state of mind in the present dealing with your situation now and going forward. My 2 cents.
Thanks,
I’m more frustrated because they told me I would hear in 7 business days and its now been 3 weeks. When I called they said they would re-fax the information to Hopkins and I would have to wait another 7 business days. I wish they would just say you probably wont hear from us in 2 months. I know patience is a virtue but it is difficult! I just want a call from a neurosurgeon even if they say I can see you in July or something. I just like knowing haha.
Alyssa
bb said:
Regarding the “proving harder than it should” aspect (getting with an neurosurgeon), you may be experiencing something that I suspect many of us did at the outset … an AVM diagnosis is made and so a neurologist appropriately shunts you off to a neurosurgeon. But these surgeons, especially at major academic medical centers (like Hopkins), are insanely busy folks who are hard to pin down for a consultation. They may do non-urgent clinic appointments only a day or two a week, if that, so if your case doesn’t involve the need for urgent or emergency attention it can take weeks to get in. This inevitably leads you to think (as I did) “I have this thing in my brain and I have to wait weeks to be seen – are you kidding?” A lot of us have been there. The key is to find a good one and get on their calendar, and then do homework and research so that when you do have the consultation you are already somewhat educated and informed about these things – that will help you make optimal use of the precious time you have with them. But most of all take everything in stride … all will I’m sure eventually become clear. And try not to let the weirdness of the past business (the 1991 MRI business) interfere with your state of mind in the present dealing with your situation now and going forward. My 2 cents.
is there any specific reason you want to see a surgeon at hopkins?
i went to a neurologist at one of the local hospitals first and he refered me to a very well respected neurosurgeon out of the same hospital. i ended up with a different guy bc i was not a candidate for surgery and needed gamma knife (so i went with his partner who did gk) but all i am saying is that there are fully qualified surgeons at the reg hospitals
btw, i got into my first surgeon within a week and never had a problem getting follow ups if i called a couple weeks in advance
My neurologist said that I should go to either John’s Hopkins or Jefferson Hospital. Jefferson is in Pittsburgh and is like 6 hours away. Whereas John’s Hopkins is only 1 1/2 away. I’m not really sure why she said just those two hospitals. Maybe they are the major ones in my area that deal with AVMs. I really do not know for sure.
jessica said:
is there any specific reason you want to see a surgeon at hopkins?
i went to a neurologist at one of the local hospitals first and he refered me to a very well respected neurosurgeon out of the same hospital. i ended up with a different guy bc i was not a candidate for surgery and needed gamma knife (so i went with his partner who did gk) but all i am saying is that there are fully qualified surgeons at the reg hospitals
btw, i got into my first surgeon within a week and never had a problem getting follow ups if i called a couple weeks in advance