Who can translate my MRI brain scan?

March 18, 2016 8:11 PM

Hi, I had an MRI brain scan a couple of months ago because I was feeling some odd sensations in the right side of my brain and became concerned. My doctor ordered an MRI and so I went and got the results. The problem is that there was no real followup discussion about it other than the findings were "nonspecific". Should I be concerned? What kind of doctor can interpret the results for me?

The test result said:

Multiple scattered subcortical white matter changes are noted over
bilateral frontal lobes which are hyperintense on long TR and TE
sequences without restricted diffusion. These findings are completely
nonspecific.

I can't reach my doctor over the phone, and she doesn't really respond to email either. I could go in person to make an appointment at the front desk but I have a feeling she won't have much to say beyond what she said already. The clinic that I go to is really disorganized and I often get a phone answering service during business that seems to be located in India. The messages don't seem to go through.

So my questions are: What kind of doctor can give me more information? Should I be concerned about this finding? What causes these changes? I had pre eclampsia during a pregnancy 2 years ago- could that have caused it?

Thanks for any insight?

posted by anonymous to Health & Fitness (12 answers total)

It is pretty unsatisfying to not have any follow-up, but on the bright side, it could mean that your imaging results aren't too concerning to your doctor. A neurologist should be able to interpret your brain scan. "Nonspecific" means that the findings are not specifically characteristic of any particular disease i.e. the findings could indicate a variety of diseases (or even be normal). Finally, IANAD, but as far as I know, preeclampsia in and of itself is not known to cause white matter changes.
posted by gemutlichkeit at 8:26 PM on March 18, 2016 [2 favorites]

That isn't enough info for anybody to give you a diagnosis. Be super-wary of anyone who tries on here. Pre-eclampsia can indeed cause white matter changes, but nobody can say whether that is what is on your scan or not without seeing the scan images themselves and knowing a bit more about your medical history and symptoms.

You should really see a neurologist if you want a definitive answer, but they will want to see the images not just the report - can you get the images on CD? Is your own doctor a neurologist or has she spoken to one? Or has she spoken to the neuro-radiologist who reported the scan? She may have done either or both of those things (I would have done), so I'd go back to her first, and then see a neurologist after that if you still aren't satisfied.
posted by tinkletown at 8:53 PM on March 18, 2016

Is this a primary care physician or a specialist who you've been in contact with?

I will definitely nth that you should see a neurologist if you've been working with your PCP. If you've been working with a neurologist, then I would get a second opinion from a different neurologist, because it sounds like your current doctor is balking at going into more depth with you about this.

Of course, IANAD/IANYD, and even if I were a doctor, I still don't think any mefite would be in the position to give you concrete answers as to how to interpret the MRI results or what may have caused it. You should definitely follow up with a neurologist.
posted by litera scripta manet at 9:54 PM on March 18, 2016

Have you tried contacting the radiologist directly? I didn't know people could do that, but a doctor (who'd been less than helpful interpreting a scan) encouraged me to contact the radiologist directly. The conversation with the radiologist was brief but somewhat helpful. It might be a start.
posted by mochapickle at 10:20 PM on March 18, 2016

Expect to be told very little past "It looks fine, we can do a follow-up in six months." I've had a bunch and I've only once had my neurologist go over the scans with me - he had five minutes free and was explaining something else and pulled them out to say why he'd ruled out MS early on, and answered some other questions at the time. Otherwise what I've gotten, without seeing the scans, has been "You don't have XYZ, the findings were benign/non-specific."

My neurologist for what it's worth reassured me that brain damage and deformities are visible and show up readily, and that it's not something subtle that you have to hunt for in a scan. I have no idea if that's really true or not, but it makes me feel better when I come out of a scan and the techs looked relaxed.
posted by dorothyisunderwood at 12:14 AM on March 19, 2016

Get a second opinion if your gut says you should. You can request a CD of your results that you can mail to a neurology clinic if they are not in your area.

My semi-unrelated anecdata: I recently broke my elbow, and the first radiologist determined I had broken my radial head. I had a weird feeling about it and went to an actual orthopedic clinic, where additional xray views were requested and it was determined, very clearly, that my ulna was fractured.

I would never have know this had I not followed up. The treatment for the two injuries is totally different and I might have ended up needing surgery had I gone with the first diagnosis.

Better safe than sorry, no?
posted by ananci at 1:55 AM on March 19, 2016

1. The suggestion to contact the radiologist directly is not a good one. Normally he or she will not talk directly to the patient - and shouldn't.

2. I agree that consultation with a neurologist is the best approach, but it will likely require a referral from the primary care physician and may not be covered by whatever health insurance you have. For peace of mind, the cost would be worth it.

3. Find a better, more responsive primary care physician.
posted by megatherium at 2:37 AM on March 19, 2016 [6 favorites]

IANYD but a major reason that doctors are cautious about ordering brain MRIs is that a lot of healthy people have these kinds of non-specific findings on MRI. We have no good way of interpreting them so we're left with no more information than before we had the scan, except the increased anxiety of the patient.

Take your scan to a neurologist if you feel you need a more nuanced discussion of the results. I'm pretty surprised your primary care physician was able to order a brain MRI and have it covered by insurance -- typically these scans are ordered by and interpreted by specialists.

In terms of your current doctor, I would go down there in person to pick up your records (including the CD for the MRI) and then find a new doctor. Most doctors are some level of difficult to get in touch with what you've described is really unacceptable.
posted by telegraph at 6:42 AM on March 19, 2016

1. The suggestion to contact the radiologist directly is not a good one. Normally he or she will not talk directly to the patient - and shouldn't.

Some radiologists do and some don't. The receptionist who answers the main line would be able to tell you their policy. The worst they can say is no.
posted by mochapickle at 7:30 AM on March 19, 2016

In my experience with an MRI it was to rule out possible causes for headaches, and not to attempt to identify other causes, if that makes sense. So maybe if you want to get beyond the "Well it's not this" then you'll have to push harder and make it clear that that's what you want. Not sure if this is what can be done with MRIs or not, though.
posted by carter at 8:15 AM on March 19, 2016

To both reassure and encourage (I hope), a neurologist is *supposed* to go over these findings with you. They have to, it's their job, whether the results are conclusive or not. They explain normal findings to the worried well all the time, just as they explain troublesome findings to other patients all the time. Just see about getting a referral, that's all.
posted by 8603 at 9:38 AM on March 19, 2016 [1 favorite]

The radiologist might be willing to discuss it with you, but I wouldn't recommend discussing it with them even if you could. The neurologist is the one who could actually interpret this in the context of your personal situation. If you get a laundry list of possible diagnoses without the personal interpretation, it might be needlessly frightening or confusing.
posted by treehorn+bunny at 2:18 AM on March 21, 2016 [1 favorite]