Saturday, March 6, 2010

Appt scheduled with NSG

[Among those in the Chiari (and related disorders) circle, we use a lot of abbreviations since everyone is weak and tired, in pain and the computer doesn't help much! NSG is shorthand for "neurosurgeon."]

I will be going back to Portland, OR on Monday, March 8, to see my neurosurgeon and get the results of the SPECT scan and the lumbar MRIs. I am prepared to hear that it shows nothing and there is nothing that can be done. I have been through so much with so many NSGs that I have become jaded, and in order to protect myself from disappointment and grief, I must prepare myself to hear that it's all been a waste of time and there is no help, not even: "We see how badly you are damaged but there's nothing we can do."

I thought I'd post here how much the SPECT scan cost my insurance company. $2885. The Lumbar MRI with and without constrast was $973. Sometimes, it helps to know the ballpark of what a test costs, so I've included that here.

I'll let you know what I find out on Monday.

Thanks for listening!


Lurker Mom said...


I am leaving this message here like a cushion for you to fall onto, and then hopefully to bounce back from....just in case you are right about the NSG consult today.
Having another doctor say you're hopeless doesn't make it any more true than it was before he said it. That's just his way of saying he's not up to the task.

I wonder, now that the dust has settled at the Chiari Institute, if they might reconsider your case.
Just a thought. Seems you had the misfortune of bad timing on your last go-round with them.
And I wonder if you shouldn't get a referral to Dr. Menezes in Iowa before waving that white flag.

Lurker Mom

By His Grace said...

Lurker Mom, thanks this morning! I'm about to head off, I'll let you know how it all goes!

I did some research in the middle of the night last night while in dire pain, and reading about dural ectasias and it says Diamox can help with them, since that lowers the CSF pressure which would be exerting pressure upon the DE's...I'm going to ask the NSG for a RX to that (my PCP won't do it...Dr. B recommended Diamox last June but never pressed thru and sent me a script for it tho I asked twice).

You musta been reading my mind, LM, b/c I have been thinking of sending my imaging, when I get the SPECT copies, to Dr. Menezes. I think my insurance would pay for his opinion.

As I told my PCP, how could I proceed with any surgery right now when there is no consensus of opinion! I've been to 7 NSGs and none of them agreed with the other. I'm not hardly going to go under the knife again with this situation.

But oh that pain is getting worse and the limitations to walking are increasing.

thanks for your kind advice and ideas!