My son has gotten three different opinions. First needs surgery. Second on the cusp of surgery, try anti inflammatories. Third no surgery, symptoms aren't even related to CM I. Still waiting on Fourth.
Did the third even look at the same films and history? My son has headaches daily, dizziness, insomnia, pain and tingling in both arms now. I feel like this is a quality of life issue. When asked my son says it stops him from doing what he wants to do 2-3 times a week. I think back to Memorial Day weekend and he had an "episode" all four days.
I just had a similar experience to your "3rd" -- I have "no" Chiari. Didn't question my symptoms. Said they were neurological. But tells me the radiologist (two of em) was "wrong". Refers me out.
Bubba, so frustrating. Doctors are all over the map on diagnosis and treatment. If there is a downward herniation of the cerebellum past the bottom of the skull it can cause mild to severe symptoms. Some docs get hung up on the size of the herniation and this can delay a person getting the surgery. Not everyone opts to have the surgery, but it’s a decision that should be made after getting a proper evaluation from a true chiari specialist. Meds never worked for me, the headache was always there, despite my tiny herniation. If his symptoms are disrupting his life to the point he is willing to have the surgery take the time to find a true expert who understands chiari and the other diagnosis that can come with it- rule out Ehlers Danlos Syndrome, cranio cervical instability, and cervical instability, then go from there. Keep going till you get a surgeon who you feel comfortable with.
Quoting for truth "Keep going till you get a surgeon who you feel comfortable with."
Having given all the opinions you note at one time or another, my stock phrase is "There is nothing on the imaging that would push me to surgery. The decision for surgery is really based on your son's symptoms. How much are they affecting his life?"
What does that mean? It means I've met you for, at most, 30 minutes, and today might be a good day in terms of your son's symptoms. I found no specific findings on physical exam(hyper-reflexia, motor/sensory asymmetry, etc) or on the images(tethered cord, syrinx, etc) that pushed me to surgery. I'm looking to you, as the parent who knows the patient much better than I ever will, to help guide your child's care. I can make his MRI look prettier. The question is, will I improve the patient?
I know you are looking to the surgeon for help making the decision for surgery. So much of Chiari surgery is based on symptoms, I'm very hesitant to recommend surgery on the first visit and may need to family to really paint a complete picture of how the patient's like is being affected, how much medical management they've failed, etc.
I hope that helps explain why there can be widely varying opinions from competent MDs(yes, we all know there are not so good MDs out there also).
Being your own advocate, learning more(on this site, etc), all helps.
jcdemar said:
Bubba, so frustrating. Doctors are all over the map on diagnosis and treatment. If there is a downward herniation of the cerebellum past the bottom of the skull it can cause mild to severe symptoms. Some docs get hung up on the size of the herniation and this can delay a person getting the surgery. Not everyone opts to have the surgery, but it's a decision that should be made after getting a proper evaluation from a true chiari specialist. Meds never worked for me, the headache was always there, despite my tiny herniation. If his symptoms are disrupting his life to the point he is willing to have the surgery take the time to find a true expert who understands chiari and the other diagnosis that can come with it- rule out Ehlers Danlos Syndrome, cranio cervical instability, and cervical instability, then go from there. Keep going till you get a surgeon who you feel comfortable with.