Anyone been there? How was it?
Posted by bettyg (Member # 6147) on :
sparkle,
what SPECIFICALLY DO YOU WANT TO KNOW??
i've read of many having gone there for this or that..
write down what you really want to know ok! good luck! Posted by kam (Member # 3410) on :
heard of one person going to get the brain scan.
kind of depressed her but helped with getting disability and with showing other docs just how lyme had affected her brain.
now sure what the prognosis was to do about how lyme affected her brain.
i know another who went for the iv test group which results were recently printed
Posted by Aligondo Bruce (Member # 6219) on :
there are several reasons why a lyme patient might go to CU. Patients should be warned...the typical CU lyme evaluation includes blood testing and neuropsychiatric testing, but DOES NOT include brain imaging or nerve testing. to get this, you must go a different route...ie...see one or more of the docs separate from the typical lyme screening evaluation.
I advise patients who can afford it to do both, becuase it's possible that you can have 'normal' or near normal neuropsych tests, yet still have a disabling case of cerebral vasculitis. sometimes neurolyme and related issues don't cause too much IQ loss, but do cause massive fatigue and irritability which can be disabling.
The CU spect scanning and pet scanning for lyme is the best in the world. The machines are high resolution and the radiologists have extensive experience in evaluating lyme encephalopathy. A dramatic spect scan can make a huge difference for a lyme patient who previously has been told that nothing is wrong with him or her. since the blood testing is a little inaccurate, sometimes a bad spect or a bad mri can show what nothing else can, which is that there is definitely something wrong with your brain.
Posted by seibertneurolyme (Member # 6416) on :
Hubby had the SPECT scan only done. Got an order from an outside neurologist and requested that scan be done at Columbia when getting insurance preapproval. Insurance company made him go through hoops -- originally denied approval but got denial overturned on appeal.
Now, if only the local docs believed the test results.
Definitely think this test result would have made disability process much simpler if we had done this earlier.
Bea Seibert
Posted by hshbmom (Member # 9478) on :
Bruce, do you have any idea about the cost of an evaluation at Columbia?
I'd love to take my daughter there.
She's already had an MRI and a spect scan...I'd love to have the results evaluated by someone knowledgeable about the effects of Lyme.
Posted by sparkle7 (Member # 10397) on :
bettyg - I just wanted to know what people's experiences were
from going there. I just found out about it. It's listed as being a
part of the psychology dept. I didn't know what the qualifications
were for being treated there & if it was expensive. Are all of their
programs about research or do they just treat you if you can afford
to pay? I have no medical insurance - so, everything is out of
pocket for me.
Posted by bettyg (Member # 6147) on :
spparkle, i understand now; you have been getting info from folks except for $$$$ involved of which i have NO info. Posted by Vermont_Lymie (Member # 9780) on :
Hi sparkle,
The best thing to do is to give them a call to ask for prices; I have found them pretty accessible when calling them for information, and the website should list their number.
Posted by denisem (Member # 11622) on :
I tried to get my daughter in for an evaluation at Columbia but found out that they do not accept children under 13.
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