MRI Results & Almost 2 Year Anniversary
 

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?

a bit of humour
 

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! :o 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

Botox Injections
 

I just came back from an appointment with the neurologist. He suggested the Botox injections. They are done every 3 months and suggested 2 sessions before you could tell if there is any improvement.

The cost is $800 for the botox and $175 for the injections. He said some insurance will not cover the injection price.

He had discuss Topomax for headaches but apparently they can cause kidney stones and I have a history of kidneystones.

I have to keep a headache log for a couple of months to get a baseline prior to treatment and he wants me to be finished with other treatments before starting this.

I still have a few more weeks of cranial sacral therapy at the osteopathy.

Starr, I am sorry that you are so discourage, I know how frustrating it is to keep looking for answers and not finding them.

Frankly the botox thing kind of scares me. After all botox is a poison.

Best wishes.

Norma

Please do ask your doctor about possible side effects.

My mother also suffered a concussion from a fall one year ago. Her neurologist also began botox injections into her scalp along key areas of her headache.

Botox seemed to work for her for about 8-10 weeks. She went every 3 weeks or so. After 12 weeks, however, she has had an on-going headache and painful scalp at the locations of her injections. This happened about 2 months ago.

For her, botox provided temporary relief, but long-term, she feels more pain along with her headaches.

I am also at my 19 month mark with daily headaches, vision problems, chronic fatigue. I'm on noritryptiline which has stopped the weekly migraines (but if I drive on freeways or read or use the computer too long, they are triggered)--but no other relief.

My neurologist is at a wait and see approach, but I feel frustrated in this in between stage of feeling a bit better but not quite to return to work or daily life.

Hi Starr,

I had a lidocaine injection to block nerve pain after the new neuro-opthamolosit told me I had occipital neuraligia. I was in the middle of a five day massive headache and it went away almost right away. Stayed away for a few days! He said that if that worked, he can add a little steroid to the lidocaine and some people get a lot of relief (weeks!) from that. I may try the next time my headache makes me want to die!!! here is a website that mentions it in a middle paragraph:
http://www.headache-treatment-option...neuralgia.html

Norma, :eek: to the price of the botox! Knowing that, botox will not likely be a viable option for me. Not unless our private insurance is going to cover a good chunk of it.

Mokey, we tried the lidocaine with steroid injections for occipital neuralgia over a year ago and unfortunately I did not get any relief from the injections at all. I'm glad it worked for you... I hope it continues to help you!

I tried a few sessions of acupuncture, but the woman that did it was such a spaz I had to stop going. She'd do things like bump the table I was laying on and startle me, or walk past me and knock the needles out of my hand. It was nuts.

I wouldn't be opposed to trying again, but I'm just so tired, I don't know how I'm supposed to find good practitioners and avoid all the bad ones. I just don't have the energy to do it. We don't know many people here to ask for recommendations and just go and try out people stuff is so exhausting.

After 2 years, its hard to look back and realize you're still in the same place as you were right after your injury with no progress. I'm still just as tired, my head pain is just as bad, I'm still walking with a cane and having regular falls due to balance issues and I still have no ability to remember a darned thing!

Guess this is where I'm supposed to be practicing acceptance of the "new me"... but that's a pretty bitter pill.

It would be a bit easier to believe in recovery if there was any evidence of any in the last two years, but even on the MRI report my doctor wrote in the "Clinical History" part: "Post Concussion syndrome. Recently headaches are increasing. Declining function and balance."

Not easy words to read.

Starr

Starr,
Don't lose hope. All research shows that the brain continues to heal, improve, make new pathways. Our job is to all the pathways to be formed. Positive thinking makes new pathways, as does negative thinking! Not always easy to be positive, though. If you continue to challenge yourself to the point of discomfort, that can be beneficial. There is no magic in the two years that health professionals tend to refer to. The brain learns and heals and repairs your whole life.
A lot of research indicates that mindful meditation can make new pathways in the brain and can be very good for pain relief. I had a migraine starting yesterday morning and decided to lie down and try to meditate...took a pain killer (migraine pill) which usually doesn't work. But it did yesterday. Maybe a coincidence!

There are some great mindful meditation programmes in Ottawa and some professors and psychologists who are involved in running courses. A friend of mine took one with a prof from Ottawa, and she told me that he had had a very bad concussion and understood the issues faced by people with concussions. I wanted to take the course offered in my city but I was not at the stage where I could sit (lie) through a course. Perhaps you are not there yet, but it may be worth exploring.
I downloaded some podcasts by Jon Kabat-Zinn who popularised mindful meditation. Perhaps you could listen online?

I feel for you. Just trying to encourage you! Hang in there. You will see progress. I know my eyes are still a problem, but I see progress in balance, hyperacusis, and cognitive issues. Even memory. But it is very slow, no doubt!
thinking of you, and wishing you strength!

Hi Starr,

Sorry to hear about your injury. I am just awaiting my MRI results and I will get them this week.

ABI or not I am much more positive about things, my Neuropathic pain is well controlled by 30mg Cymbalta and 100mg Lyrica daily. I work full time in a stressful job and can tolerate exercise (gym) upto 3 times a week.

I am not sure where I would be without the medication I take and I can no longer drink alcohol because of it, but I have my life back all be it in a slightly altered form. I am a year and three months post injury.

Good luck and I hope you recover.