Discussions By Condition: Medical Errors

Please help - 22 & feeling alone & frustrated - Post Traumatic Visual Syndrome (PTVS)

Posted In: Medical Errors 3 Replies
  • Posted By: misskr
  • May 21, 2009
  • 04:09 PM

Hi. Please talk to me if you can relate or know anything about this... I haven't been able to find anyone else on any boards anywhere with PTVS or that have had it and were treated. I'm only 22 and suffered with sometimes crippling pain for over 3 years before my diagnosis (which I'm very much thankful for)... but it feels so lonely having no one really understand your disorder and symptoms. Please listen and talk back... :(

I was in a car accident on April of 06. After that, I did a year of chiropractic care without ever being referred elsewhere or told that there could be something more serious wrong with me causing my intense neck, mid-back, low back, and frequent migraine headache pain (after asking ALL the time what else I could do to get better)... my chiro told me I was causing my own pain by "partying" and "staying up all night reading" (neither of which I did AT ALL anymore, AT ALL, because my pain was so bad that all I did was barely manage to make it to school and then lay around miserable, not even getting more than a couple hours of sleep at a time, if that). My family doctor finally ordered MRI's, which showed protruding cervical discs, and sent me to Physical Therapy at a back-specific place. I also underwent 7 rounds of injections (3 cervical epidurals, 3 cervical/thoracic facets, 1 SI injection). At least there was SOME explanation for my pain... even though it seemed a bit minor to be having such extreme effects. I did phys. therapy for 2 years before my PT thought that perhaps my jaw was off (causing neck pain) and sent me to be examined by a more advanced PT in another city. This PT diagnosed Post Traumatic Visual Syndrome, and it was like all of my symptoms (postural pain all over - neck, back, and low back, headaches/migraines, aches and pains sporadically and randomly elsewhere, extreme insomnia, anxiety in busy situations, intense photophobia, extreme difficulting reading, concentrating, and making sense of everything, etc.) finally made sense. He sent me to a Neuro-Optometrist and I'm finally receiving treatment that I just started this week after 4.5 hours of testing last week (that also set off a 2 day headache).

The corrective lenses to fix my midline shifts (VMSS - part of PTVS) give me headaches and increased neck pain when I wear them and make me really tired and fairly dizzy (when they are on and hours after), and frankly I don't know that my postural pain is getting better yet either. I'm still hopeful, as it's only been a couple days and there is a long way to go. But the fatigue really sucks. I also had a prior eye injury years ago, and using my eyes too much makes that one hurt and get pretty blurry easily... these lenses certainly contribute to that, too.

I guess I'm hopeful... I've been suffering through pain with little avail for over 3 years now. I've been on about 15 different medications over the last 2 years (refused meds 1st year) and they only seem to work for a couple weeks even though I NEVER abuse them. I think I'm a fast metabolizer of opiates. Also, I can't take anything with acetaminophen because it makes me throw up; which cuts out half of my choices. I even take a week off here and there from pain meds to increase their effectiveness (never works though). After having so many doctors tell me I must be exaggerating my pain (and completely misjudging me), that I look perfectly fine/healthy/normal (should I not wear makeup, never shower, and limp around trying to get sympathy instead?? ugh), am making up my odd vision symptoms, and that my trouble concentrating and the extreme amount of time it now takes me to do my school work is because I'm an easily distracted perfectionist (I'm a straight A college student that can barely do 1/4 of the course load I was doing pre-car accident) and I don't sleep enough (as if by choice) and that it's all my fault/in my head... it's nice to at least have a diagnosis and explanation for all these previously life-ruining symptoms.

But I don't know... whenever I tell my friends or people in my family about it, no one gets it without my having to dumb down the explanation and greatly summarize it (because they can't listen for more than 5 minutes or care). Then they still have a hard time believing it's causing the psychological-seeming and visual symptoms! Post Trauma *VISUAL* Syndrome for heck's sake... A quick Google search lists the symptoms, and ALL that ones I experience(d) were on the list before I ever saw it. It's like a half hour explanation and all they get it out of is "you hit you head and have to wear glasses now..." Not how much actual physical and emotional anguish not knowing that for 3 years has caused me... or how much effort I've had to put into doing well in school that I NEVER had to do before, and how stressful and frustrating it is to have to study for 10-14 hours straight to make sense of 1 chapter of information and that I'm ALWAYS the last one done with tests at school and never feel good turning them in... and how I no longer recreationally read more than magazines w/ short articles because it's so hard and gives me headaches. It's like everyone close to me has spent the last 3 years blaming me for my own problems and telling me to "just get over it" and "work hard" and "you're not trying hard enough".. and now that they realize it's not my fault, they all act like they were never like that in the first place. :(

Anyway... I'm just really frustrated and feel like I don't have anyone that really gets it to talk to (other than my N.O. but I can't just dial him up to chat, you know?)... if you can help or even just talk back... I'd appreciate it... or if you know someone that's been treated with prisms and occlusion and how their results were? Thanks in advance for any advice/conversation/etc... it'd just be really nice to know someone else knows how I feel. I'm 22 and haven't even gotten to enjoy my college experience or been allowed to exercise (as I did intensely and daily pre-accident) in 3 years... it's just hard. Has anyone had results w/ visual rehabilitation? Thanks for reading. =/

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3 Replies:

  • Yeah, if the chiropractor doesn't help you completely right away, then you can pretty much count on it that they are either idiotic or fraudulent (if they try to continue chiropractic treatment). And don't put up with any sort of dumping down or misappropriation of your interpretations of what is happening/has happened. I hate to give what many people would deep 'pseudoscientific' advise, but you've definitely cause serious long-term neurological damage – and a much more complete and effective physical therapy alternative can be practices like TaiChi and Yoga. Look around at different schools that emphasize things like posture, breathing, and internal awareness rather than physical ability (like flexibility, urging you to ever overstep your bounds, etc). No matter what you should not feel physical discomfort – and as soon as you do you should either 1) re-evaluate your movement/posture/mechanics 2) take a break 3) stop for the day. You should never feel like your competing or trying to keep up with the class or teacher in terms of flexibility or anything. So since there are no consistent controls for the superior long-term physical therapy that constitute some of these ancient arts, one may have to go through many schools and know what to look for. Any school you go to should allow you to sit in on a class for free, and you should let them know what you're in there for and they should understand. P.S. I doubt these glasses are the correct approach to treatment. They just give your body another hoop to jump through (they're another environmental factor to adapt to). The doctors will be looking hard to reduce your symptomology to a simple lock/key scenario, but biology isn't that simple. There have been many dramatic recoveries from car accidents and the like where people have reported introspective practices and similar types of self-healing.
    npcomplete 20 Replies Flag this Response
  • I would suggest that you do a very intensive thorough search to find the best doctor to treat you. Sometimes finding the right doctor can make all the difference in the world. Do you live in or near a major metropolitan area where there may be many good doctors available? I understand how feel when you're friends and family fail to appreciate your medical difficulties. I'm 59 years old and though my medical problems are different from yours, I've had the same experience for most of my life where family and friends don't understand my medical impairments. I feel for you.
    bearhugs 8 Replies Flag this Response
  • Sorry to hear all of the problems. I have at least one suggestion. I suffered from what seems to be similiar issues however not the eye issues, more the back and headache pain. What needs to be checked in my opinion is tigger points in your mouth. Sounds silly, I know. However, the root cause from what is apparent in your case is muscle spasms lots of them. I know you tried PT already, however there needs to be deep penetrating ultrasound to the traps, the sternocleidomastoid, as well as the temporalis muscles of your head. Please understand with out talking to you directly and assessing some of the other symptoms this is best guess. Also I make assumptions such as you have seen several different docs (Neuro, ortho, etc). The best tip off in my opinion would be the tigger point assessment. You may also be dealing with a component of transmandibular joint pain (TMJ) because of the trauma. A dentist or an oral maxillofacial surgeon may be the providers to see. These providers should also be profoundly knowledgeable in TMJ.Hope this will help you. God bless and best wishes.
    Nstarmed 1 Replies Flag this Response
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