Topic: who is THE best LL radiologist at Columbia? ....SPECT results....
SunRa
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Member # 3559
posted
I recently had a SPECT scan at Columbia but my doctors and I are skeptical b/c it came back normal. We're wondering if we should have someone else look at it.
Does anyone know who the best radiologist at Columbia is? Do you have their contact info? has anyone else ever gotten a 2nd opinion/reading?
I've been dealing with severe neurolyme for years now. I have a history of seizures/abnormal EEGs, white spots on MRI, multiple head injuries, and disabling encephalopathic symptoms which have recently gotten much worse.
It doesn't make sense that my SPECT is normal. It's making me feel like I'm crazy right now but I know I'm not.
what's the significance of a normal result??
Before the test I was so anxious about having a reaction to the dye b/c of past reactions that my heart was racing and pounding fiercely, making my head throb. Could that have increased the blood flow to the brain?
Or should I be looking at things other than Lyme as the cause of my brain symptoms (even though Rocephin is one of the only things that helped in the past)??
Would co-infections cause the same perfusion changes that Lyme does?
sorry for the million questions. I should be happy that my brain has some blood flow, but I'm just feeling really discouraged and confused right now.
thanks for any help
[ 05-19-2009, 06:23 PM: Message edited by: SunRa ]
Posts: 1563 | From MA | Registered: Jan 2003
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As far as I Know, the radiologists at Columbia who perform the SPECT scans are Lyme knowledgeable.. the one who did my daughter's told us he had performed hundreds of SPECT scans on Lyme patients, so I trusted his opinion that her SPECT was "Severe-- one of the worst he'd ever seen"...
I still decided to get a second opinion-- mostly because that comment really scared me!
There is a Neurologist here in CT who reads SPECT scans himself-- he confirmed what we already had been told.
maybe you could send your scans to him? He's at Yale.
Posts: 371 | From CT | Registered: Jun 2008
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2roads
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JK,
How old is your daughter?
I always thought that this scan would be a good measure of brain function.
I have thought about it for my son, but he is so young and I fear the radiation.
SunRa,
I would like to know what you determine.
How useful is this test wrto Lyme or trauma.
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Hoosiers51
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If Rocephin does help you, than it would seem like Lyme is a factor for you. Who knows, the brain symptoms could be bart or babs as well though.
I would not look too much into the negative result. Maybe your brain has healed some from what you have already done treatment-wise?
If you have cognitive symptoms, they could be due to Lyme or any of the co's, in my opinion.....I wouldn't read too much into a negative result because it shouldn't change treatment.
I think the most important thing to do is just find out what drugs (or herbs, supplements, etc) seem to help (or provide a kill-off) and take them !
I also had it done at Columbia, and it showed mild hyperprofusion. But it didn't change my treatment. I already know I have Lyme and I would have kept treating the same way regardless of the results.
Brain symptoms can be caused by a lot of things, so maybe it is neurotoxins from Lyme....it doesn't seem like that would show up in a SPECT.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Sunra, did you have any caffeine before the test? Caffeine in any form would throw off the test.
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cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Tincup
Honored Contributor (10K+ posts)
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Hey sunra... is dat you?
LONG time no see!!
Sorry about the problems with the spect scan.
Maybe call Columbia and ask them?
I haven't heard any bad news from anyone there.... or about anyone there.
SunRa
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Member # 3559
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hi Tincup! yep it's me. I wish I wasn't still around (except to give support of course). sigh. hope you are seeing some better days lately as well.
thanks for your replies everyone. I really appreciate it.
yeah I was under the impression Columbia was the best place to go so I'm guessing my results are accurate, but still hoping to get another opinion just in case. It just doesn't make any sense that it would be normal with my degree of neuro-cognitive-CNS symptoms. they're my most disabling symptoms by far.
I would like to think all the treatment I've done has helped my brain but unfortunately my brain symptoms have only gotten worse. (except for when I treated with IV). one reason I had the SPECT was to try to get insurance to cover IV again.
you're right in that it shouldn't change my treatment except that I've been at this for several years now and the fact that my brain has only gotten worse after tons of treatment PLUS a negative SPECT is making me wonder if there's something else going on.
But I have a low CD57 and positive IgG & IgM on WB and I herx severely so lyme must still be an issue. (??)
I did just recently test positive for Bartonella which I've never been treated for so maybe that's one key piece of the puzzle. Would Bartonella not show perfusion abnormalities?
thanks for your thoughts on this, Hoosiers. it was very helpful. I've always felt like many of my symptoms were very neurotoxic in nature so that could be one explanation.
oh, and I didn't have any caffeine or chocolate, etc.
Posts: 1563 | From MA | Registered: Jan 2003
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Columbia seems to be "the place" for SPECT scans. I would get a copy of the actual images, if you haven't done so already, so that another doc can take a look.
We were told that hypoperfusion was reversible with IV rocephin. Perhaps you took enough to make that happen?
I have no idea whether coinfections can cause hypoperfusion. I personally have only heard about LD causing it.
There is always a small chance they mixed your test up with someone else's. If you don't get answers you seek and are still not feeling well, maybe you can eventually go for another SPECT scan.
Posts: 214 | From where ticks flourish | Registered: Dec 2007
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If you have lesions that show up on an MRI then those same lesions should show on a SPECT. Generally I think it would show a larger area on a SPECT than on an MRI.
Hubby has his SPECT done at Columbia. The results said mild to moderate hypoperfusion of the entire brain including the frontal lobes. Anyway from looking at the pictures it was obvious to us that there was no way that the test result could be normal when we compared them to pictures we saw on the internet.
I have heard that Kansas University has an even more advanced SPECT scan technology than Columbia -- KU is 3 dimensional instead of 2 dimensional. They are also supposed to be Lyme literate so that might be an option for a 2nd opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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Not to sound stupid... but that CAN happen....
How is your yeast?
The brain symptoms ca be close... and hard to tell sometimes.
posted
I remember when my entire family had their's done at Columbia, our LLMD requested that the head of the dept,(can't remember his name), review the images. So there were always at least two people reviewing them.
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Dr Carolyn Britton did mine. Was referred to her by Dr. R in NYC. She's worked with Dr. Fallon on his studies. She's Lyme friendly but not a LLMD. Dr. R uses her to calm the nerves of patients who still think they have MS, ALS, etc. (like me). She was Mike Tyson's neuro so she must know her stuff... or not since he seems to be without a brain.
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