Whats up guys, today I want to talk to you about my experiences and give a short rundown of some of my symptoms, and a short review of what has and has not worked so far. I'll try to keep this post brief, but it's possible it may run long.

First off, I want to say that after being almost totally bedridden for 7 months, and with minimal functionality thereafter, I have concluded the following. The only thing that matters in life are your experiences. You are the processes running inside your brain. If your brain is damaged and your experiences are tarnished, there isn't a whole lot left. You can be optimistic, pick up your pieces and do the best with what you have, but you don't have to like it. You don't have to pretend that it's all okay.

I suffer from constant fatigue. I wake up in the morning with fatigue. Most nights I sleep for less than 3 hours, and the rare days I do get sleep, I wake up with instant fatigue that carries for the entire day. I have an incredibly difficult time concentrating. Even the smallest amount of caffeine makes me even more brain fogged so that's out. Focusing on projects is very difficult. I can't walk very far without a cane, and while my daily vertigo has improved, small amounts of motion, even a TV show, will make me dizzy again. I wrote this post in a browser, moved the browser to my other monitor, and I got dizzy in the process. I'm still unable to work.

My official diagnosis is PCS and a vestibular disorder, possibly caused by whiplash. I've undergone half a dozen tests including CT scans, MRI w/ contrast, and a myriad of x-rays. My theory was that a lot of my most serious symptoms, excluding cognitive fatigue, has been due to an underlying undiagnosed neck and vestibular problem. And from what I've read on neurotalk, I think many other people could fit into this category. Most of my day involves doing PT exercises, going for short walks around my apartment complex, trying to work on projects for even an hour a day before the fatigue is too much, then resigning back to laying in bed and playing simple games.

Here's what I've tried (aka, a series of reviews). These are just my personal experiences, so ymmv.


Conventional full spine chiropractic: D-

I did this therapy for 8 weeks. These people are frauds. They will check your leg length to see if your spine is mis-aligned, but it's junk science. I would link references here but I don't have that ability on this account. They will use pressure guns to "put your spine back in place". It's impossible for that small amount of pressure to make those kinds of effects. The motion of you walking around your living room has far more impact.

Cold laser is also BS. It's been shown to have no more efficacy than heat therapy, except that it's a lot more expensive. If they twist your neck, it can cause much more harm than good. I have symptoms of whiplash and vestibular problems so any amount of twisting can cause direct harm.


NUCCA chiropractic: C+

I did this therapy for 6 weeks. I think that there is some validity to nucca, but not for the reason the practitioners think. NUCCA involves being laid on a table and the doctor (a term which should be put in big air quotes) will take precise measurements of your position, then apply pressure to your C1 (and sometimes C2). The theory is that if your C1 is in alignment then the rest of the neck will follow. They explain that they build up kinetic energy in their hands by building up resistance, then applying that pressure (and thereby releasing that kinetic energy) to your C1. The theory here is that the kinetic energy transfers into your cervical spine and...moves the bone.

This is nonsense. I've talked to a friend of mine who is an engineer and he agreed that there is no way you can build up enough energy to do what they claim. The moment you touch the person's skin, that kinetic energy is quickly lost. It can't move your bone. He said that if the doctor was a bodybuilder, and applied the right amount of force, then it is technically possible to accomplish what they are trying to do, but that is rarely the case.

That said, I think there is SOME amount of validity to what they claim, but not for the reason they think. In my case, they put your head in a very particular position on a table that acts as a fulcrum. I believe that even small amounts of pressure while on that axis will have an effect, which is what they are doing.

One thing I noticed was that they acted very sketchy when I asked for before and after x-rays. The doctor would tell me that I have improved, but would not let me see for myself. I guess the improvement must have been pretty profound.


Blair chiropractic: B

I did this therapy for 6 weeks. At very least I can say that with blair, the treatments actually DO something. Blair involves you placing your head, sideways, on a table that will "drop" about 4 inches when they do the adjustment. The theory here is that if you push down at the right time while your neck is also dropping, it will provide low resistance (and work with the adjustment) while they move your cervical spine in the right position. In my case, this focused on the C1 - C5.

I'm giving this a grade of B, because I could have massive vertigo, go to my appointment, and come home with noticeably less vertigo. I would be able to sit upright for several hours, sometimes the rest of the day, without vertigo. Some of the side effects that I would get immediately following a treatment was muscle spasms (which hurt like crazy), and sometimes an worsening of symptoms such as balance problems, headaches, or visual disturbances. In times where I would experience those symptoms for a day or two after the treatment, I would go back, they would do another treatment, and the symptoms would go away. So I can say that at least this treatment is doing something. The problem is that the treatments don't seem to last very long. Within a couple of days I would still have the same problems. I still think it's worth trying. Ignore the "retracing" nonsense.


Physical Therapy (range of motion exercises): B+

I've been doing PT for about 5 months. The neck rotations I do involve slow side to side stretches, simple neck twists, touching my chin to my chest (while laying down), and several upper back exercises. While my range of motion has slowly improved, I still suffer from the same kinds of over-arching problems. The combination of back and neck exercises will make a difference.


Physical Therapy (habituation): A

I've been doing this for about 2 months. Habituation is the process of conditioning your brain to become feel dizzy by gradually exposing yourself to things that will trigger the symptoms. The goal is to stop exposure just before you notice symptoms, rest for a while, then return. Eventually your brain will learn to ignore the symptoms altogether. I can say that this works. I had been doing this in conjuction with blair, so it's hard to say exactly which worked, but the combination of the two has led me to be able to not be bedridden, and to be able to walk for several blocks before I'm too dizzy to continue.


While I spent the first 2 paragraphs complaining about my ongoing symptoms, I have to stress that I have improved, and I was in bad, bad shape starting from november of last year. I can't fix the cognitive fatigue, the concentration problems, and I will likely have to live my entire life like this to some degree. Someday I may even be able to work a part time job. My vertigo is way down. I can sit upright for hours at a time, even ride in a car without needing special transportation. Even with the concentration problems I have, it has improved as a result of various treatments and therapies.


Here is what has worked for me so far:

- Avoid opiates. These will cause you more harm than good and will give you brain fog like nothing else. I also noticed that if I used prescribed opiates for several days at a time, I would develop TMJ. Switch to CBD products if you live in a state where it is available.

- Increase brain blood flow. When I am brain fogged, I will do neck exercises and drink a ton of water. It lifts the fog somewhat. Also, never eat junk food before bed, you'll wake up with brain fog.

- Use wii fit balance exercises for habituation. This really helped me. On a good day I can now clear the balance bubble game on advanced (anyone who uses wii fit knows it's tough!).

- Get a chair with neck support.

- Consider buying axon optics' FL-41 indoor glasses. They're made for people with light sensitivity, but I've noticed when I'm feeling fatigued or confused and I put them on, it will reduce the symptoms (somewhat).

- If you get dizzy when riding in a car, in my experience it had to do with the muscles in my neck constricting, relating to the jostling and movement. If I made a major effort to make my neck go limp, the symptoms are reduced.

- Avoid gluten! Don't listen to the anti-fad crowd; gluten, carbs, and sugars can mess you up. I notice I am much more symptomatic if I eat a lot of breads. I try to eat a lot of fish, meats, cheeses, eggs, etc. Take carbs in small quantities if possible.

- Stay active and do as much as you can, but listen to your brain. When it tells you to lay down or stop something, do it. But if you're able to fight through it - fight as long as you can.

I might make a part 2 at some point if people don't hate these kind of long posts. Thanks for hearing me out.

I am still puzzling out PCS / orbital and temporal contusions. Forty trips to the chiro and I can stand upright most of the time. The radiologist who reviewed my MRI was a dilettante so I have found it necessary to spend hours and hours studying radiology and brainiology. The partial seizures have diminished but still happen usually due to strenuous mental activity such as conversation. My greatest challenges remains sleep, cognitive impairment, and fatigue.

Thanks to everyone in the forum for their tips and advice.

Any comments on the attached images are appreciated. Looks like contusion / deoxyhemoglobin / encephalomalacia to me, but I'm not a board certified radiologist.

Attached Thumbnails

     

foxyproxy,

Good to hear you are doing better even though you still have struggles.

Sorry to hear you had bad results with full spine chiro. The protocol you experienced is called Activator with leg check. It can be fabulous but not as good for C-1 and C-2. The tool works by breaking the friction of the vertebra and using the muscles to pull it into position. It takes more treatments than Palmer or Diversified manual adjustments. I can see how it is not helpful for PCS. It has been a lifesaver for me and my family. My chiro referred me to a PT for the C1 issues.

Regarding any of the various chiro protocols, each chiro is unique. I've been to at least 18. Only 6 helped me. One NUCCA may be of little help. The next may be great. NUCCA in the proper hands can be useful. Some NUCCA believe that they only need to treat C-1 and C-2 and the rest will magically correct themselves and heal your body. Blair is the most questionable in my view.

If your neck is still a problem, what have you been doing to maintain good neck posture during sleep, naps and rest ?

Have you had any sleep testing ? Your sleepiness and fog sure sounds like what I experience when my sleep apnea is a problem. Mine is a result of neck inflammation. If I sleep with my head and neck out of position, my breathing will eventually mess up and my day is a foggy and sleepy. My wife can predict my days by how I am sleeping when she gets up.

I use a recliner for when I am struggling to sleep in bed. I do much better now but it took a few years of sleep discipline.

Has your PT tried an gentle traction and mobilization ? Mine pulls on my head and gently rocks it and/or massages the vertebra until she feels it loosening.

Has anyone mentioned fibromyalgia due to the constant fatigue?
Might be worth looking into.

We aren't radiologists .. but maybe someone has seen similar images..
*Might be less confusion with replies if you start your own thread with this link - https://www.neurotalk.org/newthread....newthread&f=92

MarkV,

Welcome to NeuroTalk. As Jo*Mar said, you can start your own thread so your needs do not get lost.

I don't think anybody here reads MRIs. But, imaging is rarely used as a treatment guide. They are used to rule out life threatening bleeds.

It is not uncommon for an MRI to show abnormalities that may have pre-existed the recent injury or that have no relation to current symptoms.

Do you have vestibular issues that make standing a struggle ?

What are your partial seizures like ?

Can you explain the specifics of "My greatest challenges remains sleep, cognitive impairment, and fatigue." ?

What have you done besides chiro ? What kind of chiro treatments did you receive ? 40 sounds like an awful lot of chiro and I am a believer in chiro.

Fibromyalgia is a pretty deep rabbit hole. Is it actually common within the PCS community?

Have you ever experimented with manual techniques that improve breathing efficiency? Lately of been practicing aerobic exercise with only breathing out of my nose, being mindful of my breath, and using this to dictate my effort.

Additionally, I've been doing periodic sets of inter-nasal breathing. I think this has had a significant effect on everything breath related in my life, including sleep!

I just thought of it due to the extreme fatigue that was mentioned.. brain fog also is part of fibro.
We have a Fibro forum here that has more information is anyone wants to get more information..
https://www.neurotalk.org/forum12/

Foxy-

If I could offer some of my experience and opinion... I suffered from extreme dizziness too. I did not find chiropractic helpful, and think that it is not an ideal treatment for concussion/neck injury. Especially if the chiro. does nothing to work on your muscles and soft tissues. I have found a very good neck PT to be most helpful, as well as a very good vestibular rehab. treatment center. If you are on the east coast, I can recommend one here where I live.

What I have found is that cervical subluxation is not the problem, but cervical instability is. My neck PT woks on strengthening my muscles to control my neck better and does gentle mobilizations to help as well. A very good vestibular rehab. center can help treat your other vestibular problems too.

Other things that help me... acupuncture, mindfulness meditation, moderate aerobic exercise, a very clean diet.

Of course, everyone is different Best of luck on your continued journey!