UPDATE! NFers, medical profs, and anyone familiar w/ MRIs

[Captain Serious]

UPDATE!

J's scans look good!  He has no optic gliomas and no tumors!  He does have the typical NF "brightness" (she mentioned the term for this, but I missed it, I am having the report mailed to me) and a tortuous optic nerve.  It seems his left one is larger than the right, and it is bent a bit, but they think that is likely unrelated to his vision issues.  They want us to follow up in a year to make sure it's static, but since he's out of the typical age range for OGs, they aren't worried about him developing any.

I am over the moon relieved!!!!!

Thank you, thank you, thank you all for bearing with me and talking me through it.  Special thanks to tacocat and underwaterrhymes for all the NF and optic glioma information.  It's times like these I can't imagine not having ML!


Origional Post Below

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Wanna talk me down?

J went for his MRI on Thursday and I still don't have the results. I understand the long weekend may have slowed things up, but I called today to ask when I would hear (the imaging center told me it could be same day if the doctors had a chance to review the scans, so I know there was no delay in processing or anything). The doctor's assistant told me that the doctor was waiting to discuss the scans with the oncology team at rounds tomorrow and should call me be the end of the day tomorrow.

Should I be worried that this means they found something, or is this standard even when the scans are clean? I'm freaking myself out, and it's always the worst at night when everyone else in the house is asleep.

underwaterrhymes

[Deleted]

DH's doctor never releases the results before we see her in person. And you dont want to read the pathology report by yourself, trust me.

J has NF1, correct? They probably want to confer with oncology no matter what because of the cancer risks involved with the mutation (I know it's one of the mutations that causes DH's disease).

[bonquiqui]

It might be just the opposite actually. My dr called me right away, and wanted me to get into a neuro stat. I got the report and started freaking.

[Captain Serious]

Thank you, both. Yes, J has NF. This was an MRI of his brain, optic nerve and pituitary.

I didn't want to read the report alone, but it's standard for them to call us with results (even when M needed his heart surgery) because we live 1.5 hours away. If something's up, I expect them to call and tell us they need to see us again, and give us a little but if all explanation until we have an appointment. If not, them they typically can and tell hi l us we have the all-clear.

I know that she could just want to be doubly sure there's nothing before telling us. Hearing the word oncology just threw me, I guess.

[poprocks]

I had to get an MRI when I was pregnant and another one for my neurologist. For my prenatal MRI, the doctor called me, and it took almost a week for him to call. The neurologist just went over the report at the next appointment, so that was a while.

His doctor might be just trying to be super thorough, and I think it's always good when a doctor is willing to call in more doctor opinions, especially with specialists. I will send good thoughts!!

[Captain Serious]

Thanks. I am all knots until I hear. At least I was able to enjoy the long weekend, because I wasn't expecting anything until yesterday.

[lemons]

We only get results in person, too. H had a CT scan a while back and neither of us are anxious to look at that report ourselves but no one has told us the results. Not the same as your situation, though, because this was more so a baseline before his next treatment plan started.

Sometimes it does take days to get results back because the doctor has questions for the radiologist or they want to reach out to colleagues for input.

Hope you get the results soon -- scanxiety sucks!

[underwaterrhymes]

Totally normal to feel anxious, but I think It's not necessarily a bad thing that it's taking awhile.

I had a spinal MRI due to some tailbone pain I was having and it took several days before I heard anything. No tumors, just some minor anxiety during the waiting period.

I'm keeping you guys in my thoughts.

[underwaterrhymes]

Oh, and the NF Clinic I went to in Boston was actually in the oncology area. It threw me the first time I was there, but it's because of the nature of the disorder.

[Captain Serious]

Thank you, everyone. I wish the assistant hadn't told me they were waiting to talk to the oncologists. That's what really got me nervous, although I know it could very well be routine.

[CurlyQ284]

My DH got an MRI on his foot Thursday and we are still waiting. The place we got it done even promises 24 hour results and DH has made all kinds of calls. It's not for cancer, just trying to figure out what this pain is all about. It's frustrating. I hope you hear something today ((hugs)(

[Captain Serious]

May 27, 2015 8:18:30 GMT -5 underwaterrhymes said:

Oh, and the NF Clinic I went to in Boston was actually in the oncology area. It threw me the first time I was there, but it's because of the nature of the disorder.

Yeah, ours is grouped with the cystic fibrosis center and closely tied in with the oncology area, but they are seperate entities because they view NF as a nuerological disorder first, I guess.

[stellas]

They probably will never tell you results over the phone. My oncologist won't. He also won't release results until like 4 people have reviewed and signed off on them.

[underwaterrhymes]

May 27, 2015 8:19:34 GMT -5 Captain Serious said:

Thank you, everyone. I wish the assistant hadn't told me they were waiting to talk to the oncologists. That's what really got me nervous, although I know it could very well be routine.

I promise you they're all tied together. Most NF clinics have oncologists as an integral part of the team who consult on most patients, even if there are no tumors present. Most tumors in NF patients are benign, so I imagine they're just confirming that anything they might see is typical.

[Captain Serious]

May 27, 2015 8:46:05 GMT -5 underwaterrhymes said:

Most tumors in NF patients are benign, so I imagine they're just confirming that anything they might see is typical.

I think this is what's bothering me.  So far, he has no tumors of which we are aware. The scans were to see if he has any in his brain, optic nerve, or pituitary.  Even if they are non-cancerous, a growth in any of those places can cause serious problems.  It's that and the fact that this all started because his vision is inexplicaby off that is making me so nervous.  I was wondering if they would still consult oncology routinely even if they didn't see any growths.

In other words, if his MRI showed no abnormal groths or tumors, would it still be their regular practice to consult with oncology?  I realize that this is a question only people in that clinic can answer, and that I'll just have to wait to find out.

Thank you all for your patience with me.

[underwaterrhymes]

Captain Serious - I think ALL scans are presented to the oncology team. i have no tumors and they consulted on my scans, too.

[Captain Serious]

UPDATE!

J's scans look good! He has no optic gliomas and no tumors! He does have the typical NF "brightness" (she mentioned the term for this, but I missed it, I am having the report mailed to me) and a toruous optic nerve. It seems his left one is larger than the right, and it is bent a bit, but they think that is likely unrelated to his vision issues. They want us to follow up in a year to make sure it's static, but since he's out of the typical age range for OGs, they aren't worried about him developing any.

I am over the moon relieved!!!!!

Thank you, thank you, thank you all for bearing with me and talking me through it. Special thanks to Volare and underwaterrhymes for all the NF and optic glioma information. It's times like these I can't imagine not having ML!

Read more: pandce.proboards.com/thread/449440/update-nfers-medical-profs-familiar#ixzz3bLja9wtD

[Deleted]

Yay! Glad his scans are clear.

[tacocat]

Yay!!!! I am so happy to read this. Thank you for tagging me, I have been thinking about you!

[shoeless]

I'm so glad you got some good news!!

[shoeless]

I'm so glad you got some good news!!

[underwaterrhymes]

I'm so happy to see this update!

NF is a real mindfuck sometimes.

[bugandbibs]

Great update!

[Deleted]

Great update!

[Captain Serious]

May 27, 2015 9:41:45 GMT -5 shoeless said:

I'm so glad you got some good news!!

Double likes for double posts!