Should I spend the money?
 

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.

Symptoms
 

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......

Yeah, it's a wierd kind of tired isn't it? I went through grad school and motherhood so I know about sleep normal deprivation - but it doesn't feel anything like this. My anti-seizure drugs don't help the fatigue problem
either.

Like you, I am always tired. My sleep is disrupted and I wake up tired. I was guzzling coffee all day to stay awake - until I found out that was a big brain boo boo no no. Now I just nod off, anywhere, anytime. It's awful.

Cheers

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

StuckinBoston,

I would suggest getting a referral to a sleep specialist. You may be having sleep apnea episodes that deprive you of the benefits of good sleep. I have Central Sleep Apnea that started after my brain injury in 2001. My wife can tell by how I am sleeping if I will have a bad day. I have to be very careful about sleeping position.

A sleep clinic would likely start with a take home system that you wear for one night. From that they determine if you should be evaluated in the clinic. I would consider a sleep study a much better value to you.

On my bad days, I tend to have moments of sleep or loss of attention where I find myself staring at my computer screen or in some other strange staring state.

Nancys,

What form of neuro-feedback are you using, volitional or non-volitional?

Volitional is where your daughter is directed to watch a screen (maybe a video game) and try to cause her brain wave forms to improve. Non-volitional is where she just relaxes while a system either flashes lights at her open eyes or the machine causes electromagnetic fields to try to alter her wave forms. Non-volitional would be called either LENS, ROSHI, or Transcranial Magnetic Stimulation.

The results of the QEEG were sent to Dr. Walker for analysis. In the report we got back, it talked about all the different sections of the brain and the different brain wave frequencies that were either high or low. He then made treatment recommendations. Our neurofeedback uses this information to pick the spot he is going to work on and what shift in frequency we need to accomplish.

I have noticed positive changes in my daughter since starting neurofeedback - but we also started others things at the same time - trazodone & working daily with a tutor. I don't know if one has helped more than the other or if it has just been a combination of them all or just time.