Chiari Online Support Group

Neurologist vs. neurosurgeon

Hi there,

I'm getting conflicting info on whether of not I should be seeing a neurosurgeon vs a neurologist for Chiari symptom management since I won't be getting surgery for I would l think at least a year or 2 as long as there's no syrinx and the symptoms don't continue to get worse.

I'm over 100 lbs overweight, with a bacterial infection that could take a year or more to cure (fun right?!! lol), as well as asthma, and the doctor is VERY concerned to say the least about operating on someone so "unstable".

However, when I called my neurosurgeon to make a follow up appt. I had no idea I should have had another MRI 6 months ago..(The Chiari, I think, is around 6 or 7mm) his staff told me I needed to see a neurologist but when I did some on line research it seems to me that most people once diagnosed, whether they opt for surgery soon or not are "maintained" by a surgeon not a "ologist"

Thoughts?

Also, please forgive me for my bad spelling and grammar...It is very disturbing to me that the Chiari is taking away something I used to be very proud of...Still it pales in relation to some of what y'all are suffering with <3

Thanks for listening!

J. Leigh



Rebecca said:

To answer your question more specifically, most of us recommend you do a ton of research on your own as well as try to get in with a neurosurgeon that has a lot of experience in Chiari and related disorders. Most of us find that the typical neurologist and local neurosurgeons do not understand what Chiari really is and is basing their diagnosis and treatment on old criteria.



Rebecca said:

To answer your question more specifically, most of us recommend you do a ton of research on your own as well as try to get in with a neurosurgeon that has a lot of experience in Chiari and related disorders. Most of us find that the typical neurologist and local neurosurgeons do not understand what Chiari really is and is basing their diagnosis and treatment on old criteria.

Thanks everyone for your awesome replies...I know I am no where near getting surgery for all the reasons listed above, one of which I forgot: mild sleep apnea etc. What I was really trying to ask was WHICH doctor: neurologist OR a neurosurgeon...

I, like you didn't find a neurologist to be "up" on his Chiari info either, and if seems that most everyone who is dealing with symptomatic Chari's are seeing neurosurgeons...Am I incorrect?

Yes Rebecca, my symptoms at this point are not "urgent" I suppose in that I don't have blazing headaches or tons of actual physical pain (though I also have cervical spinal stenosis and that could be causing my sometimes significant neck pain); however, and todays a good example..Got about 6 hours of sleep which as of 2-3 years ago is a TON of basically uninterrrupted sleep and yet I feel like crap. Dizzy/nauseous, and I'd basically rather cut off a digit than throw up...My day is generally ended, plans cancelled etc. if that stuff hits me hard! I also cannot drive in the way I want to...can't go to the beach for the most part, and you have no idea how important that is to me...can't drive any kind of distance at night, and whereas I never minded driving in the rain, now it's not a very smart thing to do...All of this because I blacked our 1 1/2 years ago. As you can see here my cognitive abilities are going quickly downhill..I put something down and 2 seconds later have absolutely NO remembrance of where I put it! I have my own booking/managment agency (soryr, but I just can't correct anymore :(...and sounding illiterate makes my stomach turn...I used to win spelling bees and now I can't spell surgeon, and this one really scares me: yesterday I wrote a friend and said "How's "are" boy?"...I looked at it and it looked TOTALLY NORMAL and correct to me...over and over again I looked at it..About 10 minutes after I sent it I realized it was "our" not "are"...This may not seems like a big deal, but it's getting worse...That said, for some reason my math skills which were relegated to counting on my fingers have magically improved!!! Brains are weird! LOL! Also, lights suddenly make me feel icky and disoriented...

So all of that said, there a many days that still have a pretty OK quality of life; however, my concern is that these symptoms have gotten much worse in the past few months of so...

K...gotta go eat :)

Thanks for all of you <3

Thanks everyone!! Really appreciate your taking the time to reply :)



Abby said:

Some of your symptoms might be related to "the other conditions" or as your doctors say "that is not a chiari symptom, it is something else" in which, they never go on and tell you what they think the something else is. I cannot drive too well at night either, vision problems can be chiari, but more noticeably it may be due to Dysautonomia which I also have. Blacking out or near blacking out, yes, I do that too. Was diagnosed with vasovagal syncope a form of dysautonomia. Here is some symptoms for you to look over,

Before you faint due to vasovagal syncope, you may experience some of the following:

  • Skin paleness
  • Lightheadedness
  • Tunnel vision — your field of vision is constricted so that you see only what's in front of you
  • Nausea
  • Feeling of warmth
  • A cold, clammy sweat
  • Yawning
  • Blurred vision

During a vasovagal syncope episode, bystanders may notice:

  • Jerky, abnormal movements
  • A slow, weak pulse
  • Dilated pupils

Recovery after a vasovagal episode begins soon after fainting, generally in less than a minute. However, if you stand up too soon after fainting — within 15 to 30 minutes or so — you're at risk of fainting again.

Thank you for this Abby, but I don't think this is me...