What should I be asking the neurologist?
 

Hey guys, figured it would be easier to make a new topic on this. Little back story as some already known, fell on ice and hit my head on asphalt back in the early days of January. Was out of work up until a week ago where the neurologist cleared me to work part time but return to normal work activities. After a few days of shoveling and raking dirt/clay, my symptoms came back completely, like week 1 all over again.

I go to him on Wednesday, and really wondering what I should be asking him about. Im confused as to why they came back (I can only assume I wasnt fully healed) and why no other tests have been done. Ive only had a ct scan and an xray the day the injury occured at the ER.

Hes not really a hard guy to talk to, but he almost seems as though hes been there seen this before in a condescending way. It just seems at this point maybe something else needs to be done to see if anything permanent has happened. Granted, I know most of you here have been dealing with this for months as well, if not years. I just really cant afford to be in that boat. I know its not up to me, but im hoping for something that can help. I really have no where else to go in my career without starting a new one. Hard physical labor is just plain impossible for me at this current time, and now that I already failed my attempted part time return, im afraid work is going to pull the plug on me.

Ive been back out of work now for 3 days, and decided to try a few minor physical activities inside my house, and failed miserably at that. Heck, my wife thought I lost my mind because I told her I was taking a shower. 10 minutes later she asked if I took a shower and I said yes, she went into the bathroom and felt my towel and looked inside the shower and it wasnt wet. Evidently I didnt take a shower, but I swear I did. Im currently back to forgetting things and cant focus, having a hard time even driving.

What should I be asking this dr?! Im afraid to push to hard because he seems like the kind of guy that wont really be interested in being pushed. But hes the one my workplace has deemed the best around.

Try to get him to refer you for a neuro-psychological exam. It's the best way to see how the injury is impacting your day to day functioning.

I don't see much point in pushing for a conventional MRI: they aren't sensitive enough to image damage to the axons.

Good luck

Quick question. My neck has been extremely sore but my wife has been doing PT on it(she used to be a physical therapist.) do you guys think this could be the root of all my problems or no? The PT gives me slight relief for about an hour then it all comes back.

Yes, your neck should be examined. When you fell, there's a chance that your head snapped back and you sustained whiplash or some other injury.

Oh man im going to be so upset if thats what is causing this relapse. Lets hope it is. That seems like a much easier fix

Soft tissue injuries can be tricky. Hopefully, they'll also x-ray to make sure that you don't have any sort of fracture or misalignment.

I also suspect that all of that physical exertion was just too much, too soon, after your TBI.

My guess as to why you have not had any other tests other than day of is because the day of tests did not show any issues (bleeding).. you could ask for an MRI..

Can you ask him to put you on meds? Maybe something for headaches or something to help sleep? Something for anxiety?

Can you get another neurologist?

You need to make a list of all the odd things you have done, like the shower incident and have him look at it... you need to make a table of symptoms and then check off on a per day basis what you are feeling and seeing in yourself... have your wife do this as well.

Yes your neck could be the issue...

I agree with Hockey.. ask for a neuro-phyc exam

Stress will bring back all symptoms as well, at least that is what I am finding.

Hope this gets better soon... let us know what happens...

Yes, and ask your partner and friends to do the same. I was unaware of some of my odd behaviour, like repeating myself, zoning out, leaving items in weird places, etc...

Hockey- I was shocked to see what my family and friends thought about what I was doing...

If your wife's PT helps for a short term, you should be icing regularly to help your neck settle down. You should not be doing Range of Motion work. Your neck needs to rest in a limited posture, especially when you are resting.

Early on, I was very sensitive to repeated turning of my head. It took a long....... time for my neck to heal. Too much PT could be a problem. Some gentle traction with gentle mobilization helped me.

Turning your head and looking down at your new baby could be straining your neck.

Hope this helps. My best to you.

Thanks for the replies. Like I said, im really thinking that my neck is playing some sort of issue. The neck is feeling much better today, but im still feeling pretty crummy overall.

My wife has been doing the pt on it for a while now, with no real help besides that one hour afterwords. I also restarted icing my neck as you suggested, so maybe thats why my neck is feeling better today.

I go back to him on Wednesday, just dont really know what hes going to say or do. Hes older, and seems really old school. I just hope he doesnt give me the go around.

One more question. Everytime I move my neck it sounds like im russling a plastic bag or rice crispies. Not really sure what that is all about but ive also noticed my arms get tingly and I get really light headed when I rotate my head shoulder to shoulder. Im assuming its nothing to worry about but I have haf prior next issues when I was 17 and went through two windshields (whiplash through back window of single cab truck then into front windshield)
Original xray showed no damage to bones

kevbo,

Sounds like maybe cartilage grinding or something similar. I have faint grinding sometimes. Usually just a pop like grind. Could also be some bone spurs.

Ok thanks again Mark. Figured it was nothing of importance just trying to get as educated as possible!

My neck did/does all that stuff.

In my case, my PT said the popping and grinding had to do with healing. It did stop.

The bad consequences from over-rotation could be a sign of instability in your neck.

Make sure your doctors know about your prior MVA/TBI/whiplash. Your medical history cold make your case more complicated.

Dopler Test
 

Not sure what this is. However it measures the bloodflow through the neck to the brain.

Maybe someone who knows what this is can chime in, but I was told that the light headedness from move the neck can be from this problem.

Sorry I can't remember exactly what was said. I do know I am having a lot of problems with my neck and this test was recommended.

I get the snap, crackle pop when I move my neck around, so I know exactly what you mean.

Good Luck

Went back to the dr today. First and foremost he apologized for sending me back to work, and says I probably lost all the progress I gained. Long story short for now its a little more severe than he originally thought and as of now they are trying to get me into cognitive therapy. No clue what that is or what it does, but my brain hurts way to much to do anything but go lay down right now.

Well, the good news is that your doctor is taking your TBI seriously and getting you into cognitive therapy.

If nothing else isn't it nice for someone to say... you are not crazy... I was wrong... you were right... I am glad you got answers and I hope the cognitive therapy helps!

Yes it was very nice to actually hear that, as I was worried he wasnt going to be cooperative. Its actually amazing how understanding he was, even implicating that it was far more severe than he originally thought. I need to get some stuff cleared by work comp though before I can get more stuff done.

Hes also worried about the copious amount of caked dried blood in my ear. I had a lot of it in the early months where my ear would leak clear or bloody fluid but it went away. It started again when I went back to work but hasnt done so in a few days. I didnt get a clear answer from him as to why, he seem to kind of side step it everytime.

Also, what is this cognitive therapy? He basically described it as a way to see how much damage was done to my brain, and how I can reteach OR workaround the damage that was done. He claims it has helped a lot of people, but has also proven on others how serious the concussion was.

At this point not really sure what to think or whats truely going on. Anyone here ever done cognitive therapy? How often do you normally do it, and what does it entail?

If you haven't had one yet, your doctor will probably send you for a neuro-psych exam. That's a serious of tasks (memory, pattern recognition, motor skills, sometime IQ, etc...) to see how your injury is playing out in your daily functioning. This will help them identify your deficits and target your therapy accordingly.

Unlike a lot of the TBI folks here, I don't have convergence issues, so didn't need a lot of visual therapy. I needed a lot of occupational therapy and rehab to relearn basic tasks, like doing up buttons, holding utensils, etc... I did neuroplasticity exercises to regain some ability to distinguish between hot and cold, etc... (Yeah, I'm really messed up. :ROTFLMAO:)

On the cognitive side, I spent a lot of time working through the various stages of Attention Processing Training (APT). Among other things, it really helped me to learn to focus on the task at hand. I have parietel lobe damage, which makes it impossible to filter sounds - very distracting. I also needed a lot of help with auditory issues, like coping with the blasted ringing.

I benefited a great deal from cognitive therapy. It was really hard work, especially in the beginning. I'd work at it for a few minutes and be in bed the rest of the day.

It was also hard not to get discouraged when I discovered how much I'd lost. I couldn't even find all the triangles on a sheet of twelve simple shapes. What a humbling experience. However, I gritted my teeth and decided to think about where I was going, not where I was starting. In the end, I am really glad that I stuck with it.

Have hope and courage.

I must say, again, how thrilled I am for you that you have found a compassionate and concerned doctor. You are the envy of 99.9% of the TBI folks at NT.

Kev... no idea what it entails but hoping it helps... I am really concerned about the blood and clear fluid coming out of your ear... can you call and see what the docs thoughts are on that and see if he can order more tests?

So is it safe to say that I probably have some sort of brain damage? Im assuming we all do when we hit our head, but just checking.

Also scary day today. Wife had to go get her hair done, and was gone for 3 hours. The baby was extremely fussy and wouldnt stop wanting to eat and poop and want to be held. Obviously ok, thats what babies do. But, usually theres always someone with me, like my wife for example. But today was my first extended period of time with just us two. Within a half hour I became overwhelmed and got extremely confused ect ect. Luckily she fell asleep for about 30 minutes to allow me to recoop.

Now heres the crazy part, a neighbor who works nights (so shes never around during the day because she sleeping) saw me getting the mail today for the first time since the baby has been born. She asked me her name, and I couldnt remember, it literally took me over 20 seconds to think of it. I just blanked out. She looked at me like I was crazy (she doesnt know what happened to me) and that was basically the end of our converstation. As I sit here, 4 hours after all of this, my head is throbbing, im confused, and cant even fully hold a convo with my wife.

Im just at the point now where im getting scared. I understand theres probably a good chance ill never be the same, but man, this confusion and lack of train of thought is beyond scary. Im going to hate to see what im like when im 60.

Yikes.. I am so sorry that happened! I hope you get some rest tonight and feel a little better tomorrow!

Well the past few days have been a trip. Still waiting to hear when ill start therapy, and still no clue what it fully entails and what it will actually do to help me get back to work (specially because I have a physical labor job)

Anyways some of this is "hearsay" since I honestly dont recall it. Evidently Friday night was a horrible night for me according to my wife. I guess I saw a large ant in the hallway and completely lost my being. I guess I freaked out and starting cussing and swearing and stomped the crap out of the ant. The next few hours she said I was beyond strange. I guess I went into the bathroom and starting plucking my bear with tweezers. She stopped me. I then guess I stared at myself in a really weird non blinking gaze for about a half hour. After that she finally got me to go back to the couch. I guess I got up shortly after and wound up outside kicking dandelions and then sitting on the patio chair staring at the sky with my eyes wide and my mouth open for about an hour. After she got me back inside I guess I laid at the couch staring at an off tv for about another half hour. I finally came too a few hours later laying in bed. All I remember is seeing the ant, and then winding up in bed. Crazy. Saturday I kept zoning in and out all day as well but I remember it.

Saturday night we had a good friends wedding, I didnt want to go simply because of all the noise and stuff going on. I wish I listened to my brain and not my heart. Last night was pure utter misery. The music, the lights, all activities of other. I spent the vast majority outside sitting at the beach watching the waves while others partied away inside. Not only was my head throbbing, and myself zoning out, but it really made me realize my lack of wanting to be around others. Sad part is, they are all very close friends, and I couldnt be bothered at all.

Also, ive taken myself off the road unless I need to go to the dr. Driving is very dangerous for me. I only get slightly lightheaded while driving,but I have 0 focus and concept of braking and speed currently. Dangerous.

Anyways just figured id post all of this and see what all of your thoughts are. Is this par for the course 5 months in? Im just getting unsettled thinking that maybe I do actually have some decent brain damage and I may never be normal again.

Could it be a Seizure?

No clue. I know nothing about seizures nor does my wife. Guess I could research it? Im not a fan of looking up medical stuff online though because all of a sudden everyone will think they have something.

I do know I used to have seizures a lot when I was a young child because of ear problems.

Oh, Kev, my heart aches for you.

It's really frightening when you lose control of your behaviour. If I wrote down all the weird stuff I did right after my injury, I'd cause a paper shortage. Shoes in the fridge, getting lost in my own little community, standing in a shower of only hot water, etc... My husband once found me kicking the crap out of the front door. I have no idea why. Heck, I didn't even know I was doing it.

I wish we could answer your questions about whether your symptoms are "typical" and how long they might last. Sadly, while there is some commonality in TBIs, each is really as unique as the person who sustains it.

You, and your wife, should keep a journal of all your symptoms and behaviours. The unblinking, other worldly stare sounds a lot like one of my seizures. Thank you for having the good sense not to drive in your current condition.

You really do need the medical assistance you are seeking. You might also want to contact the Brain Injury Association in your area. www.biausa.org They will be able to offer support to you - and your spouse - while you deal with your TBI.

Hang it there.

Also I should add in I smell weird stuff all the time and I do have chronically high blood pressure ive been getting treated for the past 10 years. Not sure if that could be effecting all of this as well.

I was reading someplace about seizures today and brain trauma and it said that if you smell odd things that it could mean something larger...

That coupled with the staring and fluid coming out of your ear I wonder if you are not losing some sort of spinal fluid...

Smelling odd things can also be a sign of a stroke..

I am not trying to scare you but just trying to think of things that it could be that when you call the doctor tomorrow you can ask... and they can check off the list..

Think I should call the Dr tomorrow and tell him? Im just nervous he will think im nuts. That and the receptionist is very rude.

Yes, absolutely do not hold back with your doctor. Consider writing all this stuff down, so you don't forget it when you're in the examination room. If your wife is available, it might be a good idea to take her with you.

That fluid coming out of your ears alarms me, too.

Good luck and keep us posted.

I will try and be nice about this but my dear... you need a new doctor or you need to get firm with the one you have...

If the receptionist is rude... in the nicest way possible explain to her that you are suffering from a TBI and she needs to cut you some slack and listen... If she can't do that then she needs to tell you who to ask for as soon as you call since she has zero compassion for those that are struggling.

As for your doctor... Start by telling him or her that you are just looking for some answers or explanations... Your symptoms are scaring you and those around you and then explain what is has happened. If he brushes you off stay firm on getting all the answers... write them down and check them off as you ask... if you don't get an answer at first, ask again until you get one you understand.

Sorry, unresponsive doctors and rude nurses and office staff upset me A LOT... they do not seem to understand that we need help, that is why we are there... we do not have the answers and need them to help us understand what is going on with us...

Ok I called. Dr is not in today but she took a message. I just hope they dont think im nuts because five months later and all of a sudden this new weird thing is starting. Lets hope its not seizures. She said they are also still waiting for work comp to approve therapy

The weird new thing started because he sent you back to work too early and he pushed you too hard...

Do you have more fluid coming out of your ear than normal? If so, I would almost go to the ER... but that is me and I can get paranoid fast and then anxiety sets in and it goes downhill fast

Oh, Kev, if you're wrapped up with Workers' Comp, you're going to have to fight tooth and nail to get proper care. They're all about protecting employers, controlling costs and rushing you back to work.

I know that's the last thing you want to hear, when the injury is robbing you of energy, confidence and initiative. However, you need to know that you will need to advocate - hard - for yourself. Remember, you're worth it.

If you're scared, don't wait around for this doctor. Go to the ER. If nothing else, they'll document the ear fluid.

I was so clueless when this all happened. No knowledge of brain injuries at all. If you feel comfortable after talking to the neurologist, ask him the same question, or ask the nurse. It's worth a try.

I remember only being able to muster, how long til I'm me again.

That was appointment one.

Same for appt. Two I believe.

My family were able to ask more in depth questions which I was oblivious to.

Have someone with you that can follow the conversation, ask pertinent questions, and remember everything.

Peace and wellness,

Jace

I think most TBI patients go through self-doubt. I know I did.

You ARE NOT crazy. If anyone tries to tell you otherwise, get away from them - fast!!!

AMEN!!! that is what I meant to say... Someone needs to document the fluid coming from your ear!

Yah, the ear thing has sort of been addressed and he knows about it after the last appt.

I just came back from my normal physician for an annual checkup. They asked how my head was doing ect ect. I told them about the current thing, and as suggested, asked if maybe it was a seizure going on. The dr said she couldnt give me any advice on it since it was a workmans comp case and they dont do that and I have not been under their care for it. BUT, she did highly recommend that I tell the neurologist about it (which I already had) and demand some sort of MRI to look into it, but thats all she would say on it.

My wife has been researching it too after reading this discussion, and she seems to think I could maybe having them as well. Im still not convinced, nor will I be until the neurologist tells me otherwise.

Also with the workmans comp, yah its a hassle. Especially since I was sent back to work part time and now im back out completely. The dr wants me to do stuff like go for walks and cut my grass (small yard) ect ect. I just feel as though if I do, someones watching and waiting to report me. Obviously I know whats going on in my head and the pain im dealing with, but to the naked eye you would never known unless you tried to hold a conversation with me. Slight paranoia I guess.

The pressure in my head this morning has been huge and im catching myself zoning out now. I sort of seem to know what to look for. I get insanely angry or moody, then Ill do something weird like silently scream or start singing a random song furiously, then I zone out. Im noticing though, im frozen in my gaze with my mouth wide open, but im able to think. Usually I can snap myself out of in about 10 seconds. Those first 10 seconds though its just my voice in my head telling me to snap out of it, then finally im able to. Not really sure whats going on, or if its just really my mind playing tricks on me. Usually after this happens I go lay down. Also, when I do it I notice my hands and wrists get really really weak, like I cant hold them up. So I like to say Im doing a velociraptor and limp wristing it. Weird I know.