PCSLearner: Thank you, progress is wonderful! :-) I'm almost at the 8 month mark now.

My current symptoms:

Headaches-My head is still tender and aches sometimes where I hit it, getting better though, and I no longer have a headache most of the time, a major improvement. I was having headaches inside my skull and outside centering on where I hit my head and in the back. The neurologist gave me some injections of a steroid (to reduce inflammation) where I was having the external headaches and it helped tremendously. I think time has helped with the internal headaches, I rarely get them now.

Cognitive- I still struggle with brain fog, memory, word recall, and getting the words to come out of my mouth correctly. In the beginning it felt like information was flying at me at 100mph but my brain only worked at 25mph, I just couldn't keep up. Now it feels like I'm able to process at 90 mph, almost normal, but not quite, it still requires extra effort to process. I still have a hard time recalling recent events, information and am very easily distracted, often completely forgetting what I was in process of doing or saying. I still struggle to find words sometimes and say strange things, wrong words or words of my own creation. This is worse when I'm tired.

I am seeing an AO upper cervical chiropracter and it has helped quite a bit with the brain fog, so maybe I am getting more blood up there now...My neurologist said that the cognitive issues could take 1-2 years to fully resolve. It is all much better now than it was in the beginning. For months I couldn't read anything with very complex language, but I can read normally now. :-)

Emotional- As I mentioned earlier in the thread I still find it abnormally difficult to control emotions, especially anger and rage, this has improved quite a bit over time, I seriously scared myself at the beginnning. I get overwhelmed easily when there is too much input, although this is steadily improving. I've learned to avoid situations that will be stressful.

Neck pain-My neck hurt alot after the accident then faded to a moderate pain that didn't go away and would flare up occasionally. I tried physical therapy for 2 months and it didn't help my neck. I started seeing an upper cervical chiropracter several weeks ago and am noticing improvement.

Dizziness-This is the symptom that has never improved. Whenever I move around, talk, chew, blow my nose, cough, hear loud noises or certain frequencies of sound I feel like I'm swaying around, and my eyes blur. It stops when I'm still or it's quiet. Talking to people when I'm standing up is hard. I tried vestibular rehab for 2 months and it didn't help with the dizziness although it was helpful for improving balance. The docs think I have an inner ear problem, in process of diagnosis.

Nausea- Often with the dizziness I feel nauseous. It is mild to moderate, I rarely vomit, just feel bad. The up side of this is that I've lost a lot of weight. ;-)

Eyes- My eyes blur. It is uncomfortable to track anything moving very fast. They focus after I blink and then slowly lose focus until I blink again. This is worsened by/is concurrent with the dizziness and sound sensitivity. If I crunch something loud, it makes me dizzy and my eyes jump around. Very weird. I've been told this is all because my vestibular system is not working properly. It is worse in my right eye. The right eye also doesn't move quite in concert with my left eye, I was told this is a muscle or nerve problem that should resolve in time.

Ears-I am hypersensitive to sound, this has gotten a little better over the months but hasn't gone away. I am sensitive to internal (my own body) and external noise. Certain frequencies of sound are much more bothersome than others. It is worse in my right ear. My ears feel full all the time, even after they pop. It feels really weird when I get water in my ears. Having a conversation is quite unpleasant.

Equilibrium-I am easy unbalanced if I get off my center of gravity.

Fatigue-This is so much better than it was, but I'm not 100% yet. My doctor found that I was low Vit D and low Thyroid. With those in the process of being corrected, I am feeling lots better.

Clumsiness/Coordination- I am still quite likely to bumble around, with things slipping through my fingers. While I was standing still, yesterday I managed to drop a bowl of black beans all over myself and the floor. Hmmm. Hope this goes away sometime soon, I used to be quite coordinated.

I have taken guidance from the many threads about supplements on this forum and also take a very high quality multi. I've spent a lot of time researching treatments, symptoms, and doctors to find some that could help me and feel I've been blessed to find them. I've had some bad ones as well (before I learned to do the research first), I'm really glad I didn't stop trying after those discouraging visits, I don't think I would be progressing as much if I had. I drive a long way to get to my doctors, but it's well worth it. I've learned to be more proactive in regards to medical care. Thankfully, my husband is very supportive.

This forum has been incredibly helpful with practical info and support, I'm so glad I found it.

I hope your daughter continues to progress as well.

Thanks for caring,

Becca

Thanks for taking the time (and effort!) to go through this. Since the force and angle of your injury and my daughter's were similar, and you are close to the same time frame (she is 9 1/2 months), it helps to sort of compare notes.

You really do seem to be on a forward track finally. We start vision therapy for very similar eye and nausea issues in June. We have heard from four doctors that optic nerve issues resolve on their own at least a year post-injury. We aren't really wait and see sort of gals so we are forging ahead with some therapy in hopes that we can get a more complete and lasting recovery for her eyes. We will have to travel 250 miles (one way!) to our therapist but it seems as though it might be worth a try.

Our eye doctor told me crazy stories about people with head injuries who saw double for a year and didn't even know it, etc. Eye stuff is hard to diagnose because the brain of the injured person is constantly trying to make what they are seeing make sense. It's so weird.

Have you read the book Brainlash? The author was amazed at the cognitive improvement she experienced 6-7 years after her injury through vision therapy!

I can't imagine the constant dizzyness and nausea. Have you tried accupressure on your earlobes and inside wrists? Really helps my daughter when I do that. I've also learned some reflexology for her feet and accupressure/facial massage for the eye strain. We try to do these a few times a day as a preventative measure and also if a bout of nausea or headache creeps up on her.

The ENT cleared my daughter of any inner ear issues, he also agreed it seemed like optic nerve stuff. She doesn't have the constant dizzyness as you do...just nausea.

All the best to you in finding and treating this vestibular deal-

I don't mind taking the time. I hope that what I'm writing might be helpful to someone else, I know I've benefitted from all the posts. I'm sorry your daughter is still having issues, but it sounds like you're on a good track. Keep posting on how the vision therapy goes, I'm interested in what type of exercises they give her to do and how it works.

When I did vestibular rehab the exercises she had me doing (moving my head and eyes in different ways) brought on symptoms (eyes blurring, nausea, dizziness) unless I moved my head literally at a snail's pace. After two months of no improvement she pretty much gave up and sent me back to the neuro, who sent me to the ENT. I think I need to get the ear problem resolved before the therapy will work for me. My eyes have been thoroughly checked by two regular opthamologists and they said everything looked fine structurally, but I haven't seen an eye doc specialist. If getting the ear resolved doesn't take care of the eye stuff I'll pursue that.

I have Brainlash in my basket at Amazon but haven't bought it yet, I'll do it soon. I haven't tried accupressure or reflexology. I'll check those out, do you have a good link for instructions? I'm game for anything that might help! My neuro recommended trying acupuncture but I haven't tried it yet because I'm trying to stick to one therapy at a time so I can tell if things are really working or not and so I'm not completely overwhelmed with appts.

That's interesting what your eye doc said about the brain trying so hard to make sense of things that it covers up the problems. I knew the brain did that with language, makes sense it does it with other inputs.

Your daughter is so blessed to have a mom who is willing to do so much to help her recovery. I hope the therapy helps her. The right motivation makes the distance somewhat irrelevant. I never would have thought I'd be willing to drive so far for a doctor appt...

Best wishes!

BeccaP: WOW...sorry to have hijacked this thread. I also hope it helps someone else someday!

Headaches: We recently learned that headaches in the back of the head can be indicative of optic nerve trauma. My daughter's head hurt where she impacted and also at the back, like the base of her skull. That resolved fairly quickly but the impact area is still where her headaches are centered when she gets them.

DizzinessThe two of you have such similarities, but apparently have different diagnosis.
I'm really frustrated by the similarity of the symptoms between inner ear and optic nerve problems. My daughter has never used the word "dizzy" to describe her symptoms. She says "lightheaded" and once in awhile she has had the room tilt feeling. As I said, she was cleared by an ENT. Unfortunately we were referred to him through our optomitrist so he knew we had a previous diagnosis of optic nerve trauma. I feel like we talked him into his diagnosis.

ClumsyDid you know optic nerve trauma can also make you more clumsy than usual? The center line of your vision gets out of whack and leaves you prone to running into door jams, car doors, etc.

Cognition My daughter also has the occassional lapse trying to find a word or mixing up word beginnings and endings. Her grades are getting WAY better, though, and she is able to do regular work with no accommodations. Can't wait for summer so she can get a real break.

Fatigue/exercise We noticed a huge different around 6-7 month mark with both cognition and fatigue. She played ultimate frisbee for three hours at the park with just a couple "zappers" the other day. Wish she wouldn't have pushed quite that hard but it was great for her to do normal stuff with other kids.

NeckHer neck injury resolved after a few weeks with our regular chiro. I recently talked to him about the possibility of lingering issues being caused by something in her neck. He took the time to go through every symptom, range of motion, etc., and he doesn't think any further chiro care will help. Who knows?

Similar to your vestibular rehab experience, the eye exercises our optomitrist gave us brought out nausea and headaches. He advised she quit them until she gets more specific directions from the vision therapist.

I "learned" (don't know much really about accupressure and facial massage from "Brainlash." I've always done foot rubs to relax my kids, now I've just looked at charts on the internet to make a little more educated effort. No specific cites. If we end up traveling 500 miles round trip once a week for vision therapy I will probably look into professional accupressure or accupuncture as well.

We follow up with neuro same day we start vision therapy in June and I have a list of questions. She will be close to a year then so we will request hormone/pituitary/adrenal/thyroid/nutrition testing. We might also ask about a second ENT opinion.

Thanks again!

I didn't know all that about optic nerve damage. Hmm, interesting about running into edges...I just started shopping again and was thinking how odd it is that I am contantly running the cart into things when I try to go around edges, corners. Then I realized that I've been doing that a lot with my body as well, just running into things on the edges, seems like I don't judge my margins properly. Makes sense that would be an eye issue.

The first ENT I saw sent me back to the neurologist with the opinion that my issues were all brain related. I had done enough research that I wasn't sure about his diagnosis and my neuro agreed and sent me to a second ENT who is at a research university, a great diagnostician, very current. He knew what types of tests to order, thus found the bone problem, I'm partway through that now. We'll see how it all turns out. It does seem like some symptoms can overlap between different problems...

I'll check out the info in "Brainlash". Wish I would have gone to the upper cervical chiro earlier on, but it really seems to be helping now so I'm glad I finally went. Thanks for the tips.

Good luck with everything!

So now I've got you wondering if you need to see a neuro opthamologist and a behavioral optomitrist...you've got me wondering if we need to see an upper cervical chiropractor and another ENT.

Are we helping each other or hurting each other?

Seriously...at least we both have an another thing to try if our current paths don't bring some improvement to symptoms.

Absolutely, more information is good. Hopefully by the time I get the ear stuff figured out and treated the eye stuff will be better! ;-) I can only handle so many appts at a time...Thanks for sharing.

This forum is actually very awesome to me. I was here to find more about spontaneous/post operative Cerebrospinal fluid loss for my mother in law. Went off on my "squirrel" Hunt after seeing threads that reflected my life.

Having worked and trained in medicine for many years, I have attacked the issues on my own. From my children having lost the father they knew, to my wife having to become the provider for our family (psychological castration) and adapting to my "new life"

Having suffered 4 TBI's one of which was in the emotional center of my brain I understand to an extreme degree the purpose and direction of this post. With the CSF leakage, Hypersensitive ear, Body and Head Pain, Medication, Nerve damage w associated pain, parathesia, and nerves re-wiring to unrelated nerve fibers, I have retrained myself like a 2-4 year old would.

The tantrums,outbursts,rage are a fact, for awhile, if you have them. Me and my family have termed them daddy's terets. I have worked on these like you would with a child, contain the damage and learn from it. Figure out as best as you can, those that you can desensitize "stop feeling IT" and those that you are stuck with "will always hurt or illicit rage". Those you are stuck with you can learn to react a little differently so your response is not as severe.

The common recovery for TBI's is 18-24 months for the Brain. The emotional recovery "average" is 4-5 years. Now having said that it is ALL BS. It is related to your motivation and EFFORT. Every single physician I have had has said "WOW" or "I'm surprised" about my physical recovery and I have had 15+ physicians. Not a Single one has remarked more than "expected" and "not sure" about the mental recovery. I'm not sure they know what to expect and It is a painfully slow process.

They have to medicate me to get up, go down, and level out in between. I HATE pills. Two attempts to stop them on two different regimes taught me a valuable lesson just short of being hospitalized due to the complications. I have OCD thank god for the ADD to help with that.

I am the poster child, basket case. I have a lifetime Nurse case manager. I can not be tasked with the responsibility of my own medical care.

Thanx for the opportunity to share, accident has been long enough ago for every friend and associate to move on. Working on a new social structure but it is proving difficult.

My ocular damage has been pushed too far. Oh 1600 meds are past due. Thank god for caring kids