I think I could blog about our lives post neck injury and onset of symptoms every day for two weeks and not cover everything that has happened, everything that we have learned, or the number of ways it has changed our lives. I like how @mikehamm put it:
People that have never had them or have never been around anyone with them cannot understand how debilitating they can be.
Any injury or illness that affects the brain or the nervous system can be debilitating, and it is an illness you cannot see.
@millennialnow has had the following symptoms in varying degrees of severity at one point or another during previous three years: migraines, neck pain, shoulder pain, sensitivity to light and sound, tinnitus, general cloudiness or fogginess in the head, vertigo, numbness and tingling in his head, neck, and extremities, intense muscle spasms, blurred vision, difficulty speaking or stuttering words, and physical inability to engage in strenuous activity of any sort. With the exception of his speech, not one of those symptoms is tangible to anyone but him. Of course, you can see the effect such symptoms have on him, but the symptoms themselves have very few visual indicators to those of us without medical training.
Such symptoms make it difficult to correctly diagnose and find a solution for the problem. As I've said before, we've been incredibly blessed to meet individuals who can either help millennialnow or who can refer him to someone that can help; however, not everyone who experiences similar injuries has the fortune or the support network we've had.
After almost three years of watching and learning, I've discovered many things. The human body is much more resilient and fragile than I can ever fully comprehend. People survive things every day that probably should kill them. Thanks to the body's resiliency and durability they live; yet, an act as simple as closing the rear door on an SUV seconds too soon can cause lasting impact on a person - physically, mentally, and emotionally.
I am quite certain that one does not have to be an athlete to sustain a concussion or other traumatic brain injury. As it turns out, such injuries are quite easy to sustain. I am also completely convinced that there are many people walking around with an undiagnosed brain injury either because they don't know that something might be wrong or because brain injuries are one of the afflictions of the body that still elude modern medicine.
People who suffer from head/neck injuries require a tremendous amount of support - possibly for an extended period of time - but don't always get said support. There are various reasons for this. Chronic pain is still highly debated within the medical community. Many healthcare professionals don't believe that people really suffer from chronic pain; so, finding a doctor to take such suffering seriously can be difficult. It's also incredibly difficult to treat head and neck injuries because they don't always present themselves in tangible, seeable ways. Even the symptoms of a concussion or other traumatic brain injury can be attributed to many other ailments and illnesses. I remember that when we first started considering what might be wrong with millennialnow we were faced with several different possibilities.
Even when support from healthcare professionals abounds, there is a tremendous cost associated with tracking down and fixing or rehabilitating a head/neck injury. We're fortunate in that my job offers exceptional health insurance; however, even with our insurance, there are still a lot of uninsured costs associated with treatments. Individuals who don't have any insurance might not be able to seek treatment at all.
Individuals with head/neck injuries also need emotional support that can only be provided by friends and family. Living with chronic pain is something that really can only be understood by those who live with it. I think it's probably a lot like living in a fish bowl. You can see everybody around you and they can see you but you can't quite reach each other across the glass barrier that is chronic pain. It's tough on the individual living with the pain and other intangible symptoms because they need reassurance and reminders that they're still loved, valued, and useful to their friends and family. It's also tough on friends and family to provide the kind of support that is needed on a consistent basis.
The reality for people who live with injuries like this is that they might never be cured and will live with symptoms like millennialnow currently does for the rest of their lives. Many people will commit suicide either because they can no longer live with the pain or because their brain function has been altered or degenerated to the point that they're quite literally not themselves. Unfortunately, this is common among athletes who have had numerous concussions.
I don't know what the future holds for us, but I do know that all I can do is believe there will be a happy ending and @millennialnow will be healed. That's what faith is - believing in what can't be seen or proven. Until then, we just keep putting one foot in front of the other.
I had a concussion in college. The pain afterward was awful ... my doctor said it could last anywhere from 2 to 5 years! I had migraines almost every day. They eventually got better with licensed craniosacral massage therapy, but it was really 5 years later before I felt “normal” again. Of course, by then I’d made a lot of lifestyle changes.
I hope @millenialnow gets better as you both continue to work through the process. (I just caught up on the rest of your story ... I had so many hospital visits and weird symptoms over those five years. Also got rear ended! But he definitely sounds in worse shape than I was.) :’(
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I'm glad to read that you eventually did get to where you felt normal again. That actually gives hope to me, as I'm only 3 years out and still learning more about my injury.
I'd love to hear more about this craniosacral massage therapy. What's it like? When in the 5 years did you start? How did you learn about it? How long did you do it for and are you still doing it?
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I had my concussion in 2005. And I don’t think I started the massage therapy until summer or fall of the next year (I have almost no memory from that time ... I “know” what I did but it’s all very blurry. That’s something I had to get used to and be okay with for awhile. My short term memory was awful ... better now).
I’m not a doctor ... but this is what I learned. (My Mom did a lot of research on concussions and stumbled on this information.) So with a neck injury, it affects the cord that carries your spinal fluid between your head (cranium) and end of your spine (sacrum). Essentially, the fluid can get blocked, which causes headaches. Craniosacral focuses on releasing the fluid. I had a great therapist, who used techniques that basically taught my body to release. (Rather than forcing it like a chiropractor might do.) Over time, I could feel my body responding to the massage. It helped with other problems too ... I had a messed up hip and shoulder from the concussion. (I got my concussion playing intramural football.) I visited her twice a week for a year, then went down to once a week, then every other week. After year three, I think I was down to once a month.
I don’t live near her anymore, but I learned the techniques to help my body release. Headaches are pretty rare now, but those still work.
I did visit several other massage therapists, so I’d just caution you that all are not alike. You want licensed craniosacral and someone you feel comfortable with. I found that ones connected to a chiropractors’ office were usually more professional.
Please let me know if you have any questions! Some of the terms may sound funny, so let me know if I should clarify anything...
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Thank you for the info! Sorry for the delay in my response. I've had a rough couple of weeks where it's difficult for me to sit up, unsupported; so, I've greatly limited my computer time.
You mentioned you had a messed up shoulder from the concussion. I'd really like to know more about that if you don't mind. The reason is I'm actually having trouble with my shoulder as of late, as well. I actually just had an MRI on it yesterday. My initial injury was in December 2014, but I didn't have noticeable shoulder pains until last summer; however, it's within the realm of possibility I've had shoulder issues the whole time, or sustained them at the time of the initial injury. It's something I likely won't be able to get concrete answers on, but something that's become a big issue in my recovery because using my right arm/shoulder makes my migraines get worse in a hurry. I was wondering what your experience with your shoulder was.
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I'm so sorry to hear that! It was a constant battle for me too ... some days were okay, others were horrible. And it was so hard to explain it to anyone because on the outside I looked "fine." I had terrible stomach pain (probably from stress) and when the doctors couldn't diagnose it, I spent days in bed. But I think that was more from the depression, which was really the hardest battle of all.
From what I've been told, I hit the left side of my forehead (on another football player's shoulder) and then fell straight back. I blacked-out so I don't remember. I got whiplash from the back of my head hitting the ground and bouncing back up (no helmet because it was just flag football). As my body tried to compensate for the pain in the left side of my head, my right shoulder started to take the strain. The muscle between my neck and my shoulder just got tighter and tighter. That was one area the massage therapist had to focus on ... of course by the time I saw her, I was a mess and it took a lot of time to get "untangled" (at least that's how it felt).
My migraines also got worse as my shoulder tightened because, from what I understand, the muscle contracting blocks the spinal fluid.
With the pain in my right shoulder, my left hip started taking the strain. Basically, there was a zigzag effect. I felt like the more time went on, the more pain I noticed. To some extent, I think that because there was so much pain at the beginning, my mind wasn't aware of all of it (sort of like coping with trauma). There was also the build-up of pain after trying to live with it (or ignore it) for so long.
I am really thankful for my massage therapist. She taught me how to "listen" to my body (watch for warning signs, track triggers, etc.) and take better care of myself. Looking back, I was in so much pain, I was just trying to get through each day. But over time, I was able to implement what she was telling me.
I hope that is helpful! Please feel free to ask more questions. And no rush ... I understand that you have to take it one day at a time! :)
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I'm so sorry to hear that you have also suffered from a concussion, but like @millennialnow said, it's very encouraging to know you came through it. There are a lot of people who never get better, so you sometimes feel like getting better is a complete gamble and completely against the odds. We're hopeful though. And thank you so much for reading. I've had a few people share stories about their struggles with migraines/neck injuries or those of their loved ones, and it's been very encouraging to me as a whole.. It really is more common than people realize.
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