Discussions By Condition: I cannot get a diagnosis.

Neck/Back Pain, Headaches, Vision Changes/Trouble Concentrating- *Diagnosis* (Trauma)

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: misskr
  • May 17, 2009
  • 09:19 AM

Hi,

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
Abnormal posture
Double vision
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.

~KR

PTVS:
http://www.neuroskills.com/tbi/vision1.shtml
http://www.nora.cc/
http://www.padulainstitute.com/Definition_Neuro-Optometric_Rehabilitation.htm

http://www.lowvision.org/james_l_nedrow_od_ms_faao.htm
http://posturalrestoration.com/faculty/bio/ron-hruska/

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4 Replies:

  • hi my name is craig pauley and i'm 18. and i think i have similar problems as you do or did. i have two slipped cervical disc and i went to PT and nothing have got better with my vision or the way my body felt. i've been having problems with my vision, eyes hurting constantly, white dots appear in vision, sometimes my ears clog up, anxiety, and really hard concentrating. i think it could be my disc's pinching nerves but idk. if you can please contact me on aim or facebook i would appreciate it. my sn is craigster2368@aim.com and facebook just loook my name up Craig Pauley. thank you
    Anonymous 42789 Replies Flag this Response
  • I have had all of the same symptoms - I was diagnosed with Narcolepsy back in 2008. The symptoms just struck - it was a few months after my second head injury. I served for 8 years in the Army, I was medically retired as a PFC, after being dropped down to a PV1 and finding myself in the Warrior Transition Program. It was a long hard struggle - my social, marital, and career all fell apart at the same time. There is nearly no support nor treatment that anyone can provide... Like I said I have all of the same symptoms, headaches, eye pain, earaches (sort of like numbness sometimes - and they sometimes are like popped but won't; Mostly on the left side).. I also get the floaters - like white light, different than like your standard black floater that is pretty much normal. I have now had three head injuries. During this last one  the white lights were mixed with migraines, very intense; I had a case of amnesia, It was pretty awful. I am strongly feeling I have been misdiagnosed. I was thrown from a humvee in Iraq, and I also have disc bulges, herniations, a tear... Slipped discs - degenerative disc disease. I was hoping you were able to find a diagnosis and the treatment that you needed and deserved; What was it? If you, or anyone else with any knowledge, could possibly steer me in the right direction so that I too can find something to start working towards a better more normal life.
    murphy34 1 Replies
    • September 22, 2012
    • 04:12 AM
    • 0
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  • Wow, Feel like i could have written this myself. Im 43 and have been lucky to live a injury free life until I was injured 4th july weekend sustaining multiple hirneated discs in neck and mulitple bulged disks in my lower back. it has always been one of my worse fears in life to be injured where I could not go outside and do the things i love. Not only do I live a very active lifestyle, my profession demands alot pschicaly. I went through 4 months of therapy with little to no improvement of the pain and discomfort. I would have good days and bad days more bad than good, but on the bad days I felt like I was Off kilter or something and would be in pain all day. I would go to thearpy and the would see that on leg was a little longer than the other or my hips were outta line. they would do a series of strethes and jerks on the leg and would even me out, and I feel alot better afterwards. I then went through the same series of shots you did with the same results, It was terrifying for me, first time even seing a semi surgical setting besides t,v, Since I have continued therapy at home with little to no improvement. The main thing I have noticed since getting hurt is that my vision is deteriorating or getting worse. I have always perfect vision. I to am going through the same emotional battles you described and am so glad I ran across your thread. Thank you SO SO much for posting this,,, I was starting to loose it and now I have direction. I have always had a phobia about doctors, I dont like the idea of anyone practicing anythig on me. Now I can go tell him what I got.lol. Thanks agian and god bless.Travis
    TravBchilln 1 Replies
    • December 11, 2013
    • 02:41 AM
    • 0
    Flag this Response
  • Wow, Feel like i could have written this myself. Im 43 and have been lucky to live a injury free life until I was injured 4th july weekend sustaining multiple hirneated discs in neck and mulitple bulged disks in my lower back. it has always been one of my worse fears in life to be injured where I could not go outside and do the things i love. Not only do I live a very active lifestyle, my profession demands alot pschicaly. I went through 4 months of therapy with little to no improvement of the pain and discomfort. I would have good days and bad days more bad than good, but on the bad days I felt like I was Off kilter or something and would be in pain all day. I would go to thearpy and the would see that on leg was a little longer than the other or my hips were outta line. they would do a series of strethes and jerks on the leg and would even me out, and I feel alot better afterwards. I then went through the same series of shots you did with the same results, It was terrifying for me, first time even seing a semi surgical setting besides t,v, Since I have continued therapy at home with little to no improvement. The main thing I have noticed since getting hurt is that my vision is deteriorating or getting worse. I have always perfect vision. I to am going through the same emotional battles you described and am so glad I ran across your thread. Thank you SO SO much for posting this,,, I was starting to loose it and now I have direction. I have always had a phobia about doctors, I dont like the idea of anyone practicing anythig on me.  Now I can go tell him what I got.lol. Thanks agian and god bless.Travis
    TravBchilln 1 Replies
    • December 11, 2013
    • 02:45 AM
    • 0
    Flag this Response
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