White spots on Brain

Whoa, let's not get ahead of ourselves.

First of all, it is true that if you're having headaches that require MR imaging then you probably should be seeing a neurologist.

Most importantly however, you need to know that it takes a good deal of training to properly read a brain MRI. I've had 4 or 5 to date and every image that I've looked at has always shown some stuff that, to my untrained eye, seems out of place but they've still come back normal. The radiologist that read your films is trained to accurately read the films and I assure you that he or she saw the white spots that you mention. Considering how noticeable they are it seems very unlikely that a trained radiologist would miss them or see them and inaccurately conclude that they're normal.

It's not unheard of for someone to miss something in an MRI and it COULD have happened in your case. So having someone who specializes in neurology, especially headache disorders, review the imaging would be a reasonable course of action. He or she can explain the significance of the white spots to you. At this point this is absolutely no reason to panic. Unless you or SmurfyShadow have extensively studied MR imaging of the brain then it's unreasonable to think that you or I are more likely to have accurately read the scan than the radiologist. And it's plain irresponsible for someone who is not a medical professional to suggest, contrary to trained medical opinion, the existence of serious medical problems. While the board is here for us to share our experiences with headache problems, even if you are trained in neuroimaging it's against the forum rules to give medical advice ("Do not use the forum to give professional medical advice") beyond an expression of lay opinion or educated guessing. Furthermore, the image that was posted is one slice of a whole bunch of MRI images that were taken during the scan. Even aside from forum rules and medical training, it's medically unethical to provide such a strong (and worrying) diagnosis or observation without having all of the case materials available.

Susan, do seek a medical professional who can answer your questions and address your concerns. Smurfy, trained or not, your post is inappropriate and achieves nothing aside from frightening Susan.

Keep us posted Susan! I'm sure everything will be okay.

Ben

Hi Susan,
I just wanted to let you know that I have had white matter lesions as well and they can be a sign of nothing, migraines, stroke, MS etc...there are many reasons they might show up.

1) and ENT really probably isnt the best person to explain what your possibilities are

2) mine were a sign of possible stroke but my HEADACHE SPECIALIST also told me that a lot of people have them who have never had a migraine/severe headache



I would definitely schedule an appointment with a specialist so they can give you more/accurate information!

Smurfy, the reason it was removed was because I reported your violation of the forum rules and I felt that your post was irresponsible in STRONGLY suggesting that the white spots probably indicated some sort of tumor or cancer. I'm not saying that the scans could not have been read as false-negatives but it's not your place to contradict the report of a medical professional and say that Susan probably has a brain tumor. That's just inappropriate.

Your new post is better, as it mostly just shares your experiences and tells what happened to you. And your experiences are valuable--I'm glad to hear them. I understand that you experienced a false-negative report and then pressed for it to be reevaluated and found out that your tests were read incorrectly. But that is story that should be told to encourage other patients with doubts about their tests to ask questions and even seek other opinions if they're dissatisfied with what they're told. You have valuable story to tell about the importance of having your tests interpreted correctly and explained to you to your satisfaction. But your experiences shouldn't be interpreted to mean that any test that a patient doesn't understand or that looks odd to untrained eyes must have been read incorrectly. These boards are here so that we can share our experiences, not to make medical evaluations.

A more appropriate response would have been for you to say that you've had the misfortune of having a test (or tests) read incorrectly. So you recommend that if Susan has doubts about the evaluation of her scans as being normal then she should find answers for her questions. From your experiences you can share that tests are indeed sometimes read incorrectly. However, it's not your place to say that this test WAS read incorrectly. Susan should know that the spots in her films can sometimes indicate a serious problem so she should be sure that they're looked at by someone who can explain the results to her. As in pretty much all forums, Smurfy, if you break the forum rules or make an irresponsible post it gets deleted. The forum rules are very easily accessed and you're responsible for reading them and following them. Whoever did take down your post was just enforcing the rules, removing content that shouldn't have been posted. These are very busy forums and they can't write an extensive explanation for every action they take.

And I do suggest that you speak to a neurologist Susan. As I said before, it seems unlikely to me that such clearly visible spots would go unnoticed. So, considering that the radiologist almost certainly saw the spots it does seem unlikely that someone trained to read your results would think that they're normal without a good reason to. But if I saw those results you can sure bet that I'd want to talk to someone who can tell me what the spots are. When I injured my foot as a teenager and developed CRPS, a nervous system pain disorder, an orthopedist reviewed my x-rays and, seeing my heel fracture, put me in a cast. But he missed the decalcification of the bone that eventually led to the third doctor that I saw to correctly diagnose me with the nerve disorder. It turned out that casting my leg was exactly the wrong thing to do. So I'm really glad that I sought other opinions, which I did because my symptoms continued and worsened as the treatments that we tried didn't help. But I've had a whole lot of medical tests in my life and one misinterpretation taught me to be cautious but not to distrust my doctors or radiologists. Do be thorough but don't distrust your doctors. You won't get anywhere in your treatment if you do.

Best wishes Susan,
Ben

With severe migraines I had regular MRI's as a form of monitoring by my Neuro; as the severity and frequency increased, so to did the white matter lesions; we joked that I looked as bright as the tree in Rockefeller Center!

It is true that these spots can be indicative of many things, but they must be read and interpreted by a Neuro and placed into perspective with the condition and symptoms for which you are being seen. I can tell you that over time, since getting a better handle on my head pain, the number of white spots has decreased, but I do remember being quite concerned when I first got the report too.

Please see a Neurologist and have your report and films read and interpreted by them.

Good luck!
Janice

My husband is a scuba diver and I was recently reading in a dive magazine that divers are regularly found to have brain lesons. The article mentioned migraine related lesions so I did some research part of which was talking to my doctor.

Lesions are commonly found on MRI's for people with migraines. Although recent research suggests a possible increase risk for stroke for migraine sufferers, the lesions are usually not harmful.

Talk to your doctor and get your best information first hand.

Dear susan  get the films or a digital disc and take them to a Neurologist.  The White spots are called lesions and can an indication of MS.  This is how things started for me white spots on a MRI.  Go to the national headache foundation website and www.ms.org  start reading up.

Post Edited By Moderator (tysmyboo) : 10/14/2009 2:23:11 AM (GMT-6)