It's taken me all day to process my appointment today....

I was brought in to a room with him and 3 interns URGH!

Recapped my symptoms and gave him a written copy of them. He performed balance tests, reflex tests and a few others then he gave me his opinion....

PCS is improving (Don't know how he knows?)
PTSD is evident
Panic/anxiety ~keep taking meds

Now here's the kicker....

Possible Vestibular inner ear trauma due to blow to the head ~ referred me to an ear specialist to be more accurate. I researched it and it has all my symptoms and its a permanent condition with debilitating symptoms. No cure.

Chronic Vertigo and balance issues. I failed the balance test (I almost fell on him)and my eyes showed a delayed response to movement. Chronic ear pain with nausea, dizziness, head & eye involuntary jerks, blurred vision, neck and back pain.

But a lot of my symptoms fall into all 3 diagnosis. How can he possibly know which symptom is for which illness/injury?

He's also put in a referral for a therapist to help me with PTSD. He didn't prescribe me anything and says I won't have any long term effects.

Again, how does he know for sure? It just seemed like he down played the PCS a lot and spoke more to the interns then me and now I have more questions than answers.

But at least I can stay off work. He says I need more therapy before even thinking about going back.

Any thoughts????? I'm very depressed.

Kelly

Well, from my experience none of them know for sure; they work off of guesses, and see if the treatment works. Then if not, they adjust their guesses, and the treatment, and go from there.

I saw my new neuro today, and although he was more interested in helping me than the Work Comp neuro, he wasn't even willing to call what I had a concussion b/c I was not unconscious, or at least confused for a while. He decided I have post traumatic headache with some possible nerve damage. But he's guessing, just like they all do, and proscribing me some medication that is supposed to help both headaches and nerve pain. If that doesn't work, I guess he'll try something else.

I would try not to worry about all of this; it's par for the course it seems. Plus you all in Canada have a single payer system so the testing and treatments are even more rationed than down here, so they are not going to run expensive tests if they can guess a correct solution. The good news is, even if your symptoms overlap a great deal, so do the medications and treatments; so, it's likely as not he/she will guess correctly and you will have relief.

But also do your homework and be your own advocate. I don't know if nerve damage would have come up today if we had not brought it up a few times to this neuro. I know most doctors hate patients that do research, but in the area of concussion and brain injury in general, from what I've seen, it's absolutely critical b/c there is so much misinformation out there.

Good luck, hope you get some relief soon!

Scott

Thanks Scott,

I put a lot of hope into this appointment and really thought I'd walk away with more answers than questions but I was distracted by the chatter of the interns.


I wasn't my best advocate and now a little disappointed with myself.


It felt like I was a guinea pig for their research paper

Yeah, sounds like it too. But I can tell you, I've never walked away from an appointment with anybody with more answers than questions. And so far I've had 2 neurologists, a neuropsychologist and a neuropsychiatrist give me the once over. 2 were paid by WC, the other 2 privately so, it's a size comparison right now as to who is right, and who is the judge gonna believe!

Scott,

The neuro who doubted a concussion because you did not lose consciousness is ignorant of concussion. I bet he is old. His information is very old to the point of being like an old wives tale. The vast majority of concussions do not include LOC.

The IDC-9 and IDC-10 codes include a number of concussion diagnoses that do not include LOC.

Welcome to the club of the informed being examined by the uninformed.

Mist,

Sounds like the doctor was more interested in teaching or acting like he was teaching his interns that digging into your condition. The referral to an ear specialist is hopeful. There are plenty who have come through NT who have had good result with Vestibular diagnostics and therapy. Don't sell yourself short.

Hope you have a better experience with PTSD treatment than I did. The therapist tried to convince me that those who assaulted me had their own valid reasons and if I accepted that, I would get better. The cure would have been worse than the disease.

Oh man, Mark that is awful. I am so sorry that T said those things! What a crackpot...(at least in my opinion).

Mist...I am glad they referred you to a T too. I hope you get a good one, like the one I am currently seeing...but also trial and error with finding the right one, as with neuros.

I understand walking away with more questions also. I have FINALLY found a neuro that actually understands concussions and answered a bunch of questions for me, but I still feel like I am missing some answer.

Suppose it comes with the territory! I hope things go well for you, as Mark stated, the ENT (?) visit should be promising.

Keep us updated, and I am glad you don't have to go to work yet. You need the rest.

Thanks guys.

I really appreciate a listening ear and the advice.

I hope I don't have to wait long for these appointments to start rolling in.

The ear specialist is covered under OHIP but the PTSD therapist isn't. Hoping WSIB will help me out. Not sure they will as they're being S.O.B's

I have to call my employer today and give an update on my progress. Feeling some anxiety about making that call. Don't know what to say other then not better not coming back lol

Kelly

As my neuro has told me several times over the last 9 months; "if you've seen one brain trauma, you've seen one brain trauma". He has been very honest with me, telling me that they can only treat symptoms, not cure the causes and that the cure is generally the time that it takes the brain to heal. He has also advised me to explore "alternative treatments" and I'm currently undergoing acupuncture with some sucess. My neuro now wants me to try Botox injections, a fairly new treatment for tbi that has had some sucess in treating migraines. He also told me that I would only be his second patient to be treated w/ Botox. Makes me feel like a guinea pig as well. I'm on hold with that until I figure out if the Acupuntucture is beneficial. Hang in there, time has been the biggest impact on my healing. Good Luck to you.

Don't lose hope on the vestibular stuff. PTs, OTs, and even Vision Therapists can do a lot of things to help us regain our balance. I've been having balance problems since my injury a year-and-a-half ago, and my Vision Therapist (to my surprise) has started doing some spinning exercises that are REALLY helping--more than any other vestibular therapy I've done. They made me really dizzy at first, but I am acclimating to them very quickly and am also noticing that it is becoming easier to drive. It is also taking more physical activity to get me dizzy now than it used to, even just three weeks ago.

Hang in there and stay strong.