Do CT, MRI, PET scans, Xrays make paragangliomas 'angry'?

Posted by gangcarotid1 @gangcarotid1, Jul 13 1:03pm

I've had 5 Xrays, 2 CT scans (1 w contrast) & an MRI w contrast. After the MRI, I started noticing a 'tension' in my carotid artery area; feels like I have mumps. Wasn't much feeling in that area b4 that. It's constant now after the MRI. Am going for my initial visit to Mayo Rochester in 3+ weeks. Just wondering if this has happened to others?

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I underwent 2 MRIs (abdomen & pelvis) six weeks apart in the “search” for pheochromocytoma/paraganglioma without and with gadolinium contrast, and I didn’t notice or experience anything like that. But I did observe one thing that I thought was very strange as far as protocol with regard to the injection of the contrast agent. For the record both scans were done at the same facility, but different technicians. After the first without contrast, the tech “pulled” me out, opened the cap of the I.V. and injected the contrast with one “plunge”. That’s always the way it’s been done. Then I was put back in the machine. But six weeks later when I went for the pelvic scan, after the without images were complete, I was pulled out, and this tech took it upon herself to change the protocol; I’m laying on the MRI table thinking, “ why is the contrast injection taking so long, so I look at my hand with the IV, and I notice that this incompetent tech is injecting some of the contrast, then she’s putting pressure on the tube leading to my vein, and stopping it from going into my vein. I finally asked her, “what are doing, why are you doing that? She said, “I’m just putting in a little bit at a time so I don’t blow your vein. It’s a good thing I know the protocol, because I’ve had 2 brain MRIs, and the other tech did it the proper way. Obviously, this second tech
doesn’t know that the only time a tech might “blow” your vein is when they’re attempting to place the IV. I’m going to call that imaging facility and complain, because gadolinium has to be injected with one plunge, otherwise the scan won’t show any paraganglioma, and it didn’t.

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@gangcarotid1, now that a few days have passed, how is your neck feeling?

I'm glad that you will be consulting at Mayo Clinic soon and hope you will bring your question to the team there. I'd be interested in hearing what you learn. You mention that this is your first time to Mayo Clinic. You may wish to join the discussions or ask any questions you may have in the Visiting Mayo Clinic support group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

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@colleenyoung

@gangcarotid1, now that a few days have passed, how is your neck feeling?

I'm glad that you will be consulting at Mayo Clinic soon and hope you will bring your question to the team there. I'd be interested in hearing what you learn. You mention that this is your first time to Mayo Clinic. You may wish to join the discussions or ask any questions you may have in the Visiting Mayo Clinic support group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

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My neck is still the same. Will be glad to get to Mayo.
We have been to Mayo in the past. Our son had 2 complex surgeries, 1 where they basically moved his lower jaw 11mm back (Dr Keller), and another where they sewed his lips together to graft some of the lower lip to the upper lip (Dr. Clay). That was 15 yrs ago; hard to believe. Also, our daughter did her masters/doctoral studies in Physical Therapy there and graduated 13 yrs ago.
I have LOTS of WONDERFUL to say about the Gold Standard of Mayo. 🙂

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@colleenyoung

@gangcarotid1, now that a few days have passed, how is your neck feeling?

I'm glad that you will be consulting at Mayo Clinic soon and hope you will bring your question to the team there. I'd be interested in hearing what you learn. You mention that this is your first time to Mayo Clinic. You may wish to join the discussions or ask any questions you may have in the Visiting Mayo Clinic support group here: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

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When I said I'd not been to Mayo, I meant I'd not been seen by any drs at Mayo.

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I don’t believe I’ve read anything about any problem with different imaging modalities in regard to paragangliomas but what I do know from personal experience is a suspected pheochromocytoma/paraganglioma should never be biopsied. I had a biopsy performed on an unspecified 10cm tumor back in 2016 and my BP shot through the roof. They had to keep me in the hospital for almost 2 hours to try and lower the BP. They said I could’ve had a stroke. After the resection and resultant pathology the diagnosis was extra adrenal pheochromocytoma/paraganglioma.

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