SPECT scan interpretation tips?

[Singout]

Hi, everyone,

I'm getting a SPECT scan in two days--I requested it 2 weeks ago without knowing much about it, except that Dr. Hyde highly recommends it, and was booked for it almost right away, which was a bit of a shock.

I'm trying to do some reading about it, but my big question is whether those who interpret the results know what to look for, or if I should bring them some specific studies/requests re what to look for. I've been told about a psychiatrist in my area who does a good interpretation of it, but it costs $$.

As always, I don't want to do a test that has useful information that isn't noticed!

Thanks!

 

[Aerose91]

I was in the exact same boat as you- my brain was worse than anyone I'd ever met with ME and I had almost no clinical evidence that something was wrong.

The clinic where I got mine done had a psychiatrist there that went over it with afterward but I had to pay for it.

Did you get your results? I'd be curious to compare, there are very few here who have had a SPECT.

 

[PNR2008]

Well I'm one of the few.

 

[Aerose91]

Well I'm one of the few.

Right, I think we've mentioned it before, too. No?

 

[PNR2008]

Yes

 

[Singout]

Unfortunately after I posted this it was delayed because the machine was broken. Following up this month and will keep you posted.

@PNR2008 : "One of the few"???

 

[PNR2008]

Yes, In 1992 I went to Jay Goldstein MD and had a spect scan, the results were " 1) Diminished profusion in right frontotemporal lobes, 2) Incomplete response of rCBF to exercise. 3) Findings suggestive of chronic myalgic encephalomyelitis.

 

[Singout]

@PNR2008 Thanks! Did you have to advocate for any particular kind of testing or interpretation?

 

[PNR2008]

Dr Goldstein worked with Dr Mena at UCLA so I didn't have to find someone to read the test, thank God. I don't understand why you have to do that. If you got an MRI (which I have 4 times) I never had to seek a Dr out to read the results.

Of course if you are going to a non CFS/ME doc and are looking for related abnormalities.......nope I still don't get it. When my first MRI showed UBO's (unidentified white spots) nobody knew what they were but still reported them and later a connection was made between UBO's and CFS/ME.

You can take your films to a dr to read but the SPECT scan needs to be used with exercise which Byron Hyde should know about and he should know the doc that's reading SPECT scan and what to look for.

 

[Aerose91]

@PNR2008 Thanks! Did you have to advocate for any particular kind of testing or interpretation?

Mine was read by a psychiatrist who worked at the clinic where I had it done. He probably wasn't the best person to interpret it but it was better than nothing, nonetheless. If I had the $ I would be seeking out doctors to interpret it further

 

[PNR2008]

In the old days 1988-1992, if you attended a conference on CFS, afterward the doctors walked around and talked to the attendees. That's how I got Goldstein to read a BEAM scan I had done which I thought the tech and doc that took it seemed less informed. I met Goldstein, Cheney, Peterson, Bell, Defreitas, Klimas and others.

I can't tell you the excitement and energy that flowed in these rooms, I thought a cure would be found within 5 years. Silly me. I felt this was an epidemic and got involved in support groups plus listening to these doctors gave so much hope, seems like a lifetime ago.

 

[Singout]

Thanks again. I'm not seeing Dr. Hyde, just working with what he posts online. I'll try to find out more re what you're saying about exercise--do you have a specific source? Looks like I should pay for the psychiatrist re results--just want to make sure they're getting the best info to work with.

 

[Aerose91]

Thanks again. I'm not seeing Dr. Hyde, just working with what he posts online. I'll try to find out more re what you're saying about exercise--do you have a specific source? Looks like I should pay for the psychiatrist re results--just want to make sure they're getting the best info to work with.

They wanted to do a resting and exercise SPECT with me but I said no because exercise has permanently damaged my brain. The only one I took was resting.