My story will be relevant to those w/ traumatic injuries/accidents & been injured but not responded well to treatment. This condition is pretty recently recognized, *treatable*, & yet not commonly known by doctors & VERY misdiagnosed.
In April 06, age 19, I was involved in a car accident. A truck ran a red light, T-boned my side, & totaled both cars. I don't remember the actual collision itself & doctors have always assumed that I lost consciousness by hitting my head.
My friend & I seemed OK after the accident; bruised up but walking, etc. Later, my mom took us to the hospital. X-rays showed no broken bones. Over the next couple weeks, my pain intensified all over; neck, mid-back, and lower back & I also started getting migraine headaches for 1st time EVER. My dr. offered pain meds (I refused) & sent me to a chiropractor. Over the next 12 mos., I saw the chiropractic 3-4x/wk, always feeling better for just a day or 2. Ultrasound on my neck & back helped w/ headaches.
It became extremely hard to sit & concentrate during class. The pain made me have to get up & walk around every 15 min. Before the accident, I had (done) 24 credit hrs/term, a 4.0 GPA, part-time job, 5 school activities, & worked out 4-7x/wk.
With immense pain & crippling headaches 1 yr post-accident, my chiro was tapering off visits "to show improvement to the ins. company." I said flat out if I can't get my headaches relieved when they happened, I'd end up missing classes. He said my headaches & neck pain were caused by me; it was my "staying up all night reading" & my "partying;" both I no longer even thought of doing as they were too painful. I barely made it to class & lay hurting all day; how could I possibly be partying when it was hard to even take a shower? Worse, my family started believing I was faking pain for attention. The last 6 mos. I asked if there was anything else I could do, anyone else I could see, anything that could help, etc., & he always told me no. For too long, I believed him.
Exasperated, I went back to my doc for the 5th time. He finally ordered MRI's, showing 2 protruding cervical discs. He sent me a PT & offered Rx meds for pain & muscle spasms. I finally gave in, desperate & miserable. I also got my Associate's w/ honors.
In June 07, PT began, consisting of exercises (an evaluation concluded posture was off from my neck to lower back, justifiably causing pain), traction, TENs, massage therapy, & heat/ice. The 1st 6 mos., the treatments cut down pain, but my posture never really held in place. My PT accused me of not doing the exercises, not trying, etc. This was horrible, as I would spend literally hrs on them & be frustrated to tears that my posture didn't straightened out (I knew how to check). Worse, my PT canceled traction, which brought back migraine headaches. After 6 mos. w/ not much physical improvement, my PT sent me to the PT of last resort; James.
James actually treated me like a person & learned my postural "twisting" was a lot more complex. Most people have 2 "rows," I had 3-4. As 1 of his Top 5 most tough to fix; I didn't feel so bad anymore. I made some progress w/ James.
Meanwhile, I got more behind in college even though physically, I was doing better (getting less headaches too). I noticed symptoms I had always attributed to pain did not seem to be getting better as my pain did. My sleep was still horribly disrupted; sometimes I could only sleep 3-6 hrs every 2-3 days. I became aware how terribly light sensitive my eyes were (can't drive w/o shades EVER). I had anxiety in certain situations & avoided some, but was not exactly sure why. It just seemed like my spring was always wound too tightly & that it took nothing to stress me. I was also painfully aware of noises around me & had a VERY hard time studying. My school situation got so desperate that in order to make sense of just 1 chapter in a book, it often required me to study for 8+ hours at a time, which I did to the point of sheer exhaustion. I also still maintained a 4.0 GPA & was well regarded w/ my professors. I always had the thought, in the back of my mind, that I had somehow gotten dumber after the accident. Why was it so hard to do what used to come so easily? I possess a genius-level IQ & was on track to graduate college 2 years early... so what gives? My family attributed these "quirks" in my "personality" to being some weakness or compulsion I'd always had. "She's a perfectionist." No one ever believed me that it legitimately took that much time & that it was torture.
In October 2008, I started getting injections - 3 (C) epidurals, 3 (C/T) facets, & 1 SI injection. They helped w/ pain (& numbness), but they were pretty painful & fairly traumatic.
W/ mos. of no progress, James, suggested there might be something off w/ my jaw or eyes, throwing off my posture. He sent me a different PT for a new evaluation.
In April 2009, I went in to see Ron Hruska. After a thorough history (in which he listened kindly & intently), he asked a series of seemingly unrelated questions about how my personality may have changed since the car accident, if I feel anxiety a lot, if I have trouble concentrating, etc. I agreed & again, expanded on this subject, to which he listened. My mom interrupted me a few times ("it's because she's a perfectionist," "she's always been like that"), yet he focused on what I had to say. He believed my neck/back pain was as bad as I said it was & that I worked hard w/o giving up. He didn't treat me like a drama queen like so many others had before.
He measured my posture's "offness." Then he did something very strange - a series of eye tests. He also put some funny glasses on me & had me walk around for 45 secs. The glasses made me feel drunk & see the floor unevenly. I took them off, then he re-measured everything.
My posture was almost perfect. I was stunned. My mom didn't believe it. After 3 yrs of pain, torture, & an endless parade of treatments - how could my posture magically line up in 45 secs?!
Ron printed a bunch of info & explained that I had Post Traumatic Vision Syndrome - it has a name!
PTVS is a group of symptoms that result from a traumatic brain injury (whiplash included). It is essentially a neurological/cortical problem w/ processing & interpreting information taken through the eyes. An individual's perception of where "center" (midlines, both horizontal & vertical) become skewed. This leads to both "brain" & body problems. Your body lines itself up based on what your brain thinks is "center." Even w/ all the PT in the world, I could not overrule how my brain wanted the various parts of my body to be centered. That's why I hit a wall w/ PT & never got better after a point.
PTVS is not an "eye" problem. An opthalmologist will typically find nothing wrong with a sufferer's eyes. The following is a partial list of symptoms from http://www.tsbvi.edu/Outreach/seehear/archive/posttrauma.htm :
Difficulty with binocular vision
Inability to perceive spatial relationships
Objects appear to move
Poor concentration & attention
Inability to read despite the ability to write
Failure to attend to objects presented in a particular place
Visual field loss
A lot of people w/ PTVS are misdiagnosed, thought to be dramatic or crazy, & sent to inappropriate medical professionals can't diagnose this condition. Again, this is a lesser known condition. Many people who have it will have suffered for yrs, been sent to psychiatrists, & struggled w/ troubling & incorrect diagnoses. It sucks to be told there is nothing (or little) wrong w/ you when you just want to get better.
There IS treatment for PTVS & it's been successful. It's called visual rehabilitation & it can be done w/ a Neuro-Optometrist (not a Neuro-Opthalmologist). It includes highly specialized tests, then glasses w/ lenses that change the way your eyes take in what they see (via prisms & occlusion).
Ron Hruska had diagnosed me & encouraged me to see Dr. James Nedrow. Given that my particular case was fairly complex, he thought Dr. Nedrow was my best bet (and nicest).
During a 4 hour appointment, I underwent a long series of specialized vision tests (which the doctor later explained were designed by NASA). After a thorough evaluation, he agreed w/ Ron's diagnosis of PTVS. He was also sure that he could fix me (& how often do you hear that from a dr.?). He explained the various tests to my mom & me & what the results mean in detail. Among brain tests w/ & w/o corrective lenses, the amplitude of my neurons firing was almost double w/ the lenses. That made me believe I wouldn't be "dumb" forever. They make the lenses on-site & I'd need to wear them for about 4 wks. The lenses don't "correct" wrong pathways; they make new ones.
I haven't had them long, but I'm feeling my posture even out. I can't wait to be done & end my 3 year struggle.
At 22, though I'm not done w/ college, but am close & still working. Chronic pain doesn't "make you stronger;" it sucks the fun & hope out of your life. I finally have hope again. I stopped beating myself up & hating myself over all the problems I thought were my fault. This diagnosis & treatment has changed my life.
Dr. Nedrow explained a lot of PTVS sufferers have been misdiagnosed for yrs. He said troops who suffer head injuries have a high prevalance of this condition. If you think that someone you know might have this, please introduce them to it & point them to info. It's HIGHLY treatable & no one deserves to suffer. Be an advocate for your own health & well-being. Don't give up looking for ways to feel better. I wish you well, whomever you are.
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