posted
I am so very confused by my SPECT results. I picked up a copy today from my LLMD though my appt is not for another two weeks.
It apppears that I DO have "cortical hyoperfusion limited to the left frontoparietal region;" however, the doctor who wrote the SPECT report concludes that the findings "would be ATYPICAL of neuroboelliosis." Yes, "ATYPICAL," is how it reads.
WHAT??? I'm a assuming he's not too much of a duck because Dr S. always uses this same facility (Cal Pacific Medical Center) for the scans; he must trust them to be at least competent.
I thought that HYPOPERFUSION was in fact consistent with Lyme encephalopathy. And from what I read online, the frontoparietal regions are often involved.
Am I misreading/misunderstanding something??? I must be.
Here is exactly how the "findings" section of the report reads:
"REDUCED CORTICAL PERFUSION IS LOCALIZED TO THE LEFT POSTERIOR DORSAL FRONTAL AND ADJACENT SENSORIMOTOR REGIONS, WITH AN ADDITIONAL AREA OF INVOLVMENT COMPRISING THE LEFT PARIETOTEMPORAL CORTEX . . .
. . . GROSSLY NORMAL CNS DISTRIBUTION OF TRACER ACTIVITY IS OTHERWISE DEMONSTRATED, WITH NO OTHER QUALITATIVE OR QUANTITATIVE EVIDENCDE OF ASYMMETRY IN CORTICAL GRAY MATTER ACTIVITY OR IN THE BASAL GANGLIA."
Can anyone make sense of this language, or perhaps compare it to their own SPECT report?
I do notice that the word "heterogenous" is lacking, and I know that lyme encephalopathy often involves "heterogenous hypoperfusion."
Is it that I do have hypoperfusion (decreased blood flow), but not in the right areas? Not enough hypoperfusion? Is it not asymmetrical enough? So lost here!
I really wish I knew a brain surgion right now so I could talk to someone about this!
I'm freaking out because A. It scares the **** out of me that I may have brain damage and B. I'm afraid that with a report like this, i.e. one which does NOT conclude neuro-Lyme in spite of evidence of hypoperfusion, then my insurance will reject IV therapy, which I am really, really ready to do.
I know Dr. S will explain all of this in 2 weeks, but it's killing me to be so confused as to whether or not Lyme has penetrated my brain.
By the way, I don't have significant memory problems but I do have trouble w/ words on occasion, have trouble telling stories aloud, and have severe anxiety and anger (atypical for me) a lot of the time. I also feel disassociated/completely unhinged many times.
Another thought: could this be evidence of babs or bart in the brain??? I tested pos for both.
Thank you thank you to anyone who knows ANYTHING or can share their own SPECT findings!!!
Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
One more thing, I had the SPECT done after 2 months of Bartonella treatment (Rifampin then Levaquin), and another 2 months of Bicillin injections for Lyme.
Wondering if this treatment could have influenced the images...
Posts: 390 | From Oakland, CA | Registered: May 2007
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adamm
Unregistered
posted
According to what I've read, generally the hypoperfusion's
global.
However, an atypical SPECT CANNOT be used to rule out TBI's.
So basically,
don't worry too much about it. You're better off than many.
This condition is often totally reversible, and
doesn't necessarily mean that necrosis is occurring. (Somebody
please correct me if I'm wrong.)
I have a friend who had severe neuro involvement who is now
completely back to normal (and one of the smartest people I
When you find her post, click on the icon of 2 people standing by an envelope...this link will take you to a new window where you may send a private message (PM).
Hope this helps you!
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
One thing to keep in mind is you can have lyme encephalopathy and still have a near-normal spect according to Fallon. My guess is that in these cases the encephalopathy would be in early stages, but I don't know.
Here's a 'classic' spect report from a bad case of encephalopathy, me:
'moderate to severe global cortical hypoperfusion with herogeneity', worse than last report.
what that means is that the process is occurring throughout the brain. it is reduced blood flow consequent to inflammation of cerebral blood vessels.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
thank you everyone, the info has helped. i guess i am convinced that i have encephalopathy...
up for more help Posts: 390 | From Oakland, CA | Registered: May 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Wish I could help, Ellie. I've never had a SPECT, just MRI's.
I agree with Adam and Bruce. While it may not be all throughout your brain, at least it is presenting in the front of your brain. The frontal lobe area is typical for lesions, too.
I would hope this means you can get improvement with treatment. Most SPECT scans improve with treatment.
I imagine your LLMD will consider it an objective finding in support of lyme encephalopathy and will treat you aggressively.
Good luck!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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tailz
Unregistered
posted
I think both my parietal lobes are involved. For some reason I think mine were mid-parietal. I've no clue either.
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tailz
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posted
I do know I'd never get a SPECT scan again though. The EMFs about killed me.
I had the urge to pee as soon as she turned the machine on, and I struggled the entire 45 minutes to hold it in.
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
IMO, your llmd is in the very best position to explain what your SPECT scan results mean.
the results can sound very scary yet not mean as much as you think. hope that's the case here.
good luck- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I can't comment about the SPECT but I wonder if using different words for "anxiety and anger" would give you more respect from the medical world - words that describe what it is in terms that are not related to MOOD.
I see "anxiety" as Central (or other ) nervous system IRRITATION . . . and "anger" as frustration, able to filter and respond due to being overwhelmed. Do your verbal responses "get stuck"?
I don't have the best phrase, but think in terms of your brain and if you describe that it may be more scientific and not so easily brushed aside. Maybe. Just a thought.
quote:Originally posted by Ellie K: One more thing, I had the SPECT done after 2 months of Bartonella treatment (Rifampin then Levaquin), and another 2 months of Bicillin injections for Lyme.
Wondering if this treatment could have influenced the images...
my spect images (done 3 times) have showed decreased CBF in many parts of the brain. Now that I have treated a while they have returened to normal.. (although I am still having problems with the brain, but the problems are smaller than whay they used to be)
Posts: 275 | From Home | Registered: May 2007
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