Hi all...hope all are doing good. I have been having a tough time lately. Don't know if it's the weather changing or what but my mood has been really low. I talked to the doctor about the "blank" periods during my days and how they are bothering me more.

He wants to do another set of mri's to just make sure everything is fine. My last set about a year or so ago was fine. So really don't want to spend all the money to hear them say since my MRI is fine I should be fine. He said they could do another EEG but he doesn't think they will find anything.

Not sure if I should put out the money or just find a more understanding doctor?

How many have had clear MRI's and still have symptoms?

Thanks and I truly hope one day I can return all the knowledge that you share.

Hi,
I have had a clear MRI, and two CT scans and none have shown anything. However my neurologist said that alot of injurys on the axon level are not picked up by MRI's.
I have heard of people getting PET scans, but for various reasons.

Have you done the neuro-psych test? I am getting mine done in June and have heard that this can at least set you up for results whether they be neurological or psychological.

I find it frustrating as well, having to wait it out,having some days harder than others and people not understanding.

I hope that things go well for you, but I would look into some other doctors. Sometimes all it takes is getting the right doctor that can understand and point you in the right direction.

Feel better.

I'm with Joanne, have a neuro-psych.

A conventional MRI will not be able to image your injury. At best, it might show blood deposits from shearing for up to three years post concussion. There are speciailzed MRIs that "might" show the structural damage, but they're very expensive and won't tell you how the damage is actually playing out in your behavior, cognition, motor skills, etc...

Those blank bits of your day sound very much like absence seizures. Have you discussed that possibility with your doctor. Are you on any anti-seizure meds?

If you want the big song and dance on speciality MRIs and/or neuropsych testing, let me know.

Cheers

I agree with the others. The neurological vs psychological is the problematic issue with neuro-psych assessments. If the neuro-psych doctor has a psychological bias, it will be likely that he will diagnose a psychological condition.

The true value of a neuro-psych assessment is validating you symptoms. If you are struggling cognitively, it will show a weakness. It helps to define your cognitive and memory struggles. It also help to have confirmation so you can know you are not going crazy.

You would likely benefit from keeping a journal of your daily activities and symptoms. It should include sleeping, eating, and the environments you are in. You will likely find some common triggers to your absence seizures or whatever they are.

How do you sleep? Do you wake up refreshed or still tired? Do you dream?

Most PCS symptoms are made worse by triggers. If you can discover them, you will be able to minimize their effect.

My daughter had two MRI's and CT Scan. All three were clear. The MRI's gave me piece of mind that there was nothing "major" wrong - i.e. no bleeds, tumors, etc. Other than that, they weren't very helpful.

We got more useful information out of the neuropychological testing and the QEEG. The results of the QEEG were used to target her neurofeedback.

Thanks for all the replies. I did have some neuropsych test done about the same time as the last set of MRI's. Pretty much those test came back OK but they did write about how tired I was and that they had to keep asking for me to "give them more" on my answers. There was some difficulty in my writing and reading speed.

They said on the test that my responses and actions were of someone suffering from sleep deprivation, so it was hard to get a full assessment since I almost fell asleep during testing.

I sleep but NEVER feel refreshed. I can sleep 12-15hrs and wake up feeling like I just slept 20minutes. I know this is a big issue and the more this goes on the harder things are getting.

I asked the doctor about have injury on a axon level that wouldn't be picked up by an MRI and he said to just get a fresh set so they can be sure. He also wants to look at the hypothalamus area, as damage to that area can cause the fatigue.

I am just getting tired of being so tired and just going through the motions of the day. The disconnect feeling is huge and I don't understand why they don't understand that.

Sigh......

Any chance you could give us some details about how the neurofeedback is going, what it is targeting etc?

To add my experience to the list:
I would say that it is worth getting a comprehensive set of tests, if they are available, but probably not worth redoing an MRI unless there is a really good reason such as it not being clear due to the fact that you were moving the first time.

If the MRI was done well the first time then surely repeating it will show up exactly the same things. It would be different if they were thinking about doing some sort of functional MRI, which might show up something more.

I think that all brain injuries are different, although there can be similarities.
In my own case, my MRI showen no abnormal structure in the brain. However, I specifically asked for a cervical MRI as well, because my neck had been injured, and that did show up a prolapsed disc. So, I would say that in my case it was worth doing. EEG and QEEG also showed up abnormalities, which were worth knowing about. Those test would be worth repeating periodically as they could show differences, hopefully improvements. Likewise, neuropsychological testing and balance testing can show up things. However, doctors are sometimes reluctant to test in case they find abnormalities, because they don't know how to treat them.

Personally I would like to know what was wrong even if that did not affect my treatment in any way, but that is a personal choice.

CS