second opinion today

[ngraham819]

i had my 2nd opinion with another neurosurgeon/spine specialist today.  he pretty much told me the same thing the 1st one did, my chiari is not causing my problems.  it is not compressed, my spine is fine, no bulging disks, csf flow is normal, basically no compression or complications.  thank goodness for that, but now i have to start over again.  i'm so frustrated and discouraged, back at square one and don't know where to go now.  i see my neurologist on tuesday to consider more options.  could it be endocrinological?  it still has to be something neurological.  i have nearly 2 pages of symptoms, most of which i experience daily or frequently.  some of the most bothersome are

migraines
dysphagea
vertigo
imbalance
severe fatigue
somnolence
brain fog
hot flashes
shaky hands
drop things a lot
edema
pressure in head
vision problems
inability to regulate body temp
bicuspid aortic valve
occipital neuralgia
dizziness
light headedness
depression
anxiety
restless limbs
general body weakness
and more

what do i do now?  i cannot travel to see a chiari specialist, who else should i see?  does anyone have any experiences like this or suggestions?  i have 3 young children and i am so tired that i can't play with them or do anything with them.  some days i can barely even move.  i'm getting desperate, and now have to start over again.  i really need some answers please.  thanks a ton in advance.

nicole

[selmaS]

I PM the list to u.....I hope they can help.

"selma"

[ngraham819]

my husband has been convinced by the last ns/spine specialist we saw that he also thinks its incidental and not causing the problems.  he's trying to convince me to seek other possible causes, which i am fine with, but i know that it cannot be passed off so easily as this.  right now it is my focal point, but i am open to other opinions.  i see my neurologist on tuesday to get her opinion and hopefully more answers.  thanks for the support.  and good luck to you!  i hope you get some answers as well.

nicole

[ngraham819]

i would love the names of drs in md.  i have seen dr moskowitz and dr yalamanchili.  i know dr weingart is supposed to be really good, i think he's my next stop.  if there are any more, that would be really helpful, thank you.  i also did read dr oros poem.  its amazing that he understands how we feel.  even he knows that most drs don't get it and pass it off.  heres to hope that it will become more widely understood, within our lifetime : ).  

nicole

[eej1981]

Your symptoms sound exactly like all of mine! I'm scheduled for a CT scan next week to check for Chiari.

From some of the reading I've done, I guess it's common to have the malformation overlooked... meaning, it's missed. I would get 10 opinions if you have to, even if that merely means taking your CT and MRI scans to a different neurologist.

Good luck - I (literally) feel your pain!

[selmaS]

...Ny has good drs too!!...but I also have a few names in MD if u don't have any......did u read Dr Oro's poem??...



Godspeed
"selma"

[ngraham819]

thanks everyone.  i contacted dr. oro and they won't look at my films unless i make an appt to be seen.  they recommended i get in touch with tci in ny.  they are within driving distance, but about 4 hours.   there is a good dr in baltimore that i'm considering contacting.  i'll figure it out.  if it does turn out that the chiari is really not causing my symptoms, god knows what else it could be.  gonna be a long process.  thanks again for all the support and encouragement, and will keep you posted.

nicole

[selmaS]

..youngwife made a good suggestion...many of the chiari drs will review ur films.....and give reccomendations....I met Dr Oro in July and wish I was closer to him....he really made me feel confident in his ability.....I also met Dr Paolo Bolognese and am planning a trip to NY to see him....I feel just as confident with him as Dr. Oro.....going to a chiaari specialist is a must...I've been to 2 different NS that also told me my symptoms were not the chiari...but I also have most of the symptoms.....these drs plain do not know how to handle it and will not admit it.....see my journel for a poem by Dr. Oro.....u will see just how much he understsnds.

"selma"

[youngwife]

You are not going to get quality care until you find a Chiari specialist.  

Dr. Oro in Colorado will review your films.  Go to his site (google his name and location), and his contact info is there.

MANY neurosurgeons will tell you it's not Chiari related, but that doesn't mean it's not Chiari.  It just means you've not found a real Chiari specialist.

Also, join ASAP, and you can see that many patients, like yourself, have been through the very same thing.  

Rebecca

[Shane99]

Wow! I really don't even know what to say. So many of those are classic symptoms for this not to be chiari and/or syringomyelia. I have most of those problems. Bless your heart.

Okay, so they're saying it's not chiari related, but are they giving any ideas as to what it could be?

I still think I'd push the chiari. Get a third opinion from a completely different hospital. A lot of time people go to different doctors in the same hospital - but the person reading the MRI may be the same or they may be confering with each other.