I'm just a couple weeks shy of my 2 year anniversary of my brain injury. My symptoms are still about the same as the days / weeks following my injury with very little improvement.

I've yet to have a single day without a headache in almost 2 years. For most of the 2 years, if I was very careful and rested, I could keep the head pain to about a 5 or 6. If I was not extremely careful and over did it, it would easily escalate to 8 or 9 and would take several days or a week of complete rest to get back to a 5 or 6.

We tried many medications and I just can't seem to tolerate them even at tiny doses, with the exception of Topamax, which I take 200 mgs a day with few problems. (Food tastes weird, but I don't care about that.)

Back in October, I overdid it one weekend, by choice and knew I would have to "pay" by resting for a week after to reduce my head pain and did so and the head pain never went down. Completely rested for a 2nd week, still no relief.

Since October, my head pain has been sitting consistently at a 8 or 9 with no relief so my physiatrist ordered an MRI a couple of weeks ago, just to make sure nothing was going on. I had not had an MRI since my accident, only a CT scan about 6 months after my injury.

When my doc order the MRI he said he didn't expect to find anything, not to worry, he said he didn't expect to see any damage from my fall either, since most damage is too small to show up. I've read similar things here, so I was totally expecting the results to be "normal".

This morning I got an online message from my family doctor, who was copied on the MRI results.

It is not very detailed and I've made an appointment to go in tomorrow to get a copy of the actual results, but here is what he said.

"It looks like there is evidence to support an injury to the temporal lobe of your brain from head trauma. It probably will not be something that can be treated or 'fixed' easily, but at least it does confirm your symptoms and struggles."

I will eventually get more information from my physiatrist as well, during my next appointment at the next rehab cycle, but other than asking for a copy of the MRI report, what should I be asking?

I'm a little upset by the MRI showing anything. If it shows some damage at all, just imagine what there is that is too small for it to show?

Temporal lobe damage is consistent with poor memory and difficulty learning new things, yes? This would make it consistent with my neuropsych report from last year.

Anyhow, I was already kinda freaking out about my 2 year anniversary with so little progress and now this.

Starr

Starr,
I have read many of your postings.

My daughter has gotten help through acupuncture. She had never had headaches before her injury, but has had relief.

Please know that we are thinking about you tomorrow and through the week as you learn more and process the injury that you sustained two years ago.

My best to you,

Sorry to hear abut the headaches. If it gives you hope, I am still improving after 2.5 years. Still some bad days but starting to see some good days if I am careful and resist doing too much!

I tried nortryptiline 10mg. It may be giving some relief. Not sure.

My new doctor has ordered a new MRI wih DTI and something else. A more detailed MRI I guess. My first one was clear. I wonder if your second one was more sophisticated?

I think it is good to know about the problems. You can focus on therapies...you can invisage healing in that area. Remember about neuroplasticity!!!!

Good luck tomorrow. Perhaps ask what kind of MRI was done?

You are really getting an MRI with DTI (diffusion tensor imaging done) done?
I didn't know those are available apart from research yet. They can show structural changes in the integrity of white matter happening after concussion (which is not possible to be recognized with standard MRI).

There are studies that could show structural changes in the white matter 1 year after the concussions happened.

I don't know what the "something else" you mentioned could be. As far as I know DTI is already the cutting edge technology in current magnetic resonance imaging (MRI) technology regarding brain injuries available.
Please keep the board updated when you have had the imaging and know more.

Best wishes to you and the thread starter!

Hi again! I remember now...the MD (neuro-opthamologist) ordered the DTI and SWI. He is new to my city so hopefully the hospital knows what he is talking about! My GP was not aware of those types of MRIs!

I am not in Florida but saw that this place offered the DTI and SWI:
http://www.universitydiagnostic.com/...in-injury.aspx

The other MRI that can show something is the functional MRI. I have not had one, and was interested in pursuing that avenue but a friend who researchers fMRI at a university said it may not give me any info. that I can use at this time. In other words, if it shows my brain is not normal, how do I know that it wasn't abnormal to begin with (I should add he was a friend when we were teenagers and I haven't seen him since then so still has that mentality!)

Has anyone out there had the DTI or SWI MRI? fMRI? Perhaps we should start a thread on this?

I just googled DTI and discovered that one of the MRI researchers in a lab nearby is called Dr. Frankenstein. Really.

Maybe she is just what we all need!

SWI is an MRI sequence (like T2* is an MRI sequence, for e.g.) especially useful to detect blood.

DTI also does not need any changes to the MRI device itself, it just a software package, too, so actually it should be available. However, the ordinary radiologist does not perform DTIs yet.
If you end up getting one, maybe it would be worth sharing your experience here to others. Also it might be worth to start a thread on this topic.

However, the problem is that the imaging will not really give the patient a profit, as there is not a medical therapy, yet, which I do not need to tell anybody here.


Starr,
Sorry for sort of hijacking your thread. I suggest, if anybody has to share something about DTI, it will be better to do it a new thread.

I got a copy of the MRI report. They are comparing it to the CT scan I had 6 months after my injury. Its quite a long report, but the "important" paragraph was pointed out by my family doc, but seems rather vague and non committal.

"There is a single focus of blooming artifact in the mesial aspect of the left temporal lobe, at the level of the amygdala, not seen in the rest of the sequences. Given the patient's clinical history, this could represent a sequela of remote trauma / microbleed."

They also noted a "Single nonspecific focus of T2 hyper signal in the subcortical white matter of the left frontal lobe." But my family doctor said that's nothing to be concerned about, that every MRI shows that.

Embarrassingly enough, it also showed "a mild mucosal thickening of the left maxillary sinus, left sphenoid sinus ..etc".... I was just getting over a cold and had a snotty nose! Thanks for being so thorough!

Coincidentally, I just got called to brain injury clinic for tomorrow morning (thanks for the short notice!) so I'll see my physiatrist then.

While the MRI results might be slightly alarming to me and maybe interesting even... they don't answer the question of why my headaches have worsened since October and refuse to break and calm back down to a 5 or 6 instead of insisting at sitting at 8 or 9. I'm not even asking for *pain free* here.

And while its good there's not something extra terrible going on in my head, I just want a break from the head pain!

Starr

I had a severe, ongoing headache that stayed at 9/10 range for months. My neuro ordered a spinal tap and the headache(s) completely went away within 5 minutes and hasn't come back.

Maybe you should ask for a spinal tap?

Maybe you have an increase of intracranial pressure that isn't high enough to be seen on the MRI but can still be felt by the patient.

My physiatrist doesn't have much more to offer me... all the meds we've tried other than topamax have failed. (Various anti depressants, beta blockers, maybe others' I can't remember right now.)

For now we'll continue on with the once a week physiotherapy to keep working to try to improve the gait and balance issues... we were previously doing twice a week, but found that twice a week was not leaving enough recovery time between sessions, so we cut it back.

He's left me with some Ritalin that I can experiment with for the fatigue if I want and try to balance that with pacing strategies. I've not yet tried it. He gave me the script around the time my head pain went up and then I didn't try it as I didn't want to be tempted to over do it when my pain was already so high.

He's suggested I contact the opticalm.ca people to see about getting tinted lenses for visual issues.

My neurologist appointment is in July and then there should be more things to try... I know this particular neurologist does Botox for headaches and stuff and my physiatrist thinks I'm probably a likely candidate, so maybe that will be an option at that point.

Right now, when its currently snowing yet again and there's several feet of snow outside, its really hard to think about holding on until July for more options. Especially since I've already been holding on for 2 years now.

Kinda disheartening to feel like you just have to hold on indefinitely, with this level of pain, with no relief.

Esthersdoll, I have often wondered about a spinal tap... that would be something the neurologist would have to address.... in july.

I guess we just keep moving forward. That's what we do. Not like there's other options. But right now, this sucks.
Starr