PCS and Doctors
 

I am now 15 months post injury and am still learning to adjust to the new me.
My biggest issue is the doctors that I have been have not really diagnosed me with post concussion syndrome. Here is my story:

I was in a car accident in July 2010 in which I sustained a concussion. About 5-7 days after the accident all of the symptoms hit me hard. I would zone out, have daily migranes, anxiety, depression, a loopy/dizzy feeling, short term memory problems, and like most could not handle anything that would overstimulate. My family doctor sent me to a neurologist who did at ct csan and eeg both turned out normal.

My first visit with the nurologist he drilled me about having a lawyer and suing who hit me.( At this point I had not even considered any legal assistance I was just trying to find out what was wrong) The visit ended up with him telling me that I have a concussion with post concussion depression and migranes. But at this point I was breast feeding my 10 week old baby so I did not want to get on medication.

After my problems did not improve and I went back to my family doctor who then sent me to a psychologist. The psychologist did help but after a month or two I realized that I could no longer function with the anxiety and I had to get onto medication and stop breast feeding. So I went back to the neurologist. The neurologist just told me to take some vitimans b2 and magnisium and I would be better by the time I saw him the next time.

My psychologist then sent me to a psychiatrist from medication. I was on a variety of meications but ended up with zoloft. At this time I needed Short term disability paper work filled out and the Psychologist said his job is to write perscriptions and not fill out paper work. I was really upset so that was the last time I saw him.

I then could no longer handle the hastle of everything so I went back to work. I never made it more than 20 - 25 hours a week and that was miserable. My memory caused me to make so many mistakes and I could not remember much that they told me. I went back to the neurologist and he just told me that I was going to be fine by the time I saw him next but did perscribe me medication for migranes. No one would address why I could not remember anything. I cant remember everything I have been on but I finally found topamax that works for me.

Then I had enough I new more was wrong than what everyone was telling me so I found someone to give me a neuropsychological test. The results said that there was moderate problems in all of the areas that I knew I was having problems with. (memory) In the report he diagnosed me with complex post concussion syndrome. Complex because of multiple concussion in highschool sports.

Work had gotten so bad I could not take it anymore and I had a breakdown. My doctor wrote me off work again, but becuase it was my family doctor my STD kept getting denied. I then had another check up with the neurologist and gave him an update of everything and he after asking about a lawsuit and lawyer told me that there was nothing wrong with me and to go back to work.

So here I am now I found a new psychiatrist who through medication has improved my anxiety/depression. She diagnosed me with major depressive disorder recurrent type. Not sure that I agree with that but who knows. So now she says that she can not help me other than the anxiety depression issues. So she want me to go see an ENT doctor for my loopy feeling and headache after exercise. So I asked her if an inner ear problem would cause Short term memory problems and don't all of my symptoms fit more under the post concussion syndrom diagnosis. She then told me that the concussion should have been cleared up 3-4 months post injury and if that if I want to beleive it is from the concussion than I can but she does not think it is.

At this point I am so exhausted I wish I had a doctor that would just tell me what it is for sure so I can start accepting it and moving on with my life.

What a frustrating story!! So sorry that you are not being supported by any of your doctors. I dont have any answers or suggestions for you....but wish i could give you a big hug. I cannot imagine how difficult this must be with the added stress of being a new mother, all the hormone changes (which PCS messes up most of ours anyways, nevermind what having a child does to your hormones), and the disability stress. Hoping things get easier for you and your symptoms lessen.

Thank you for the Hug :) It is still a struggle I know that it is post concussion syndrome but it would be nice to have some support and confirmation. I recently applied for ssdi and if the doctors wanted no involvement with the possiblity of a lawsuit they definantly do not want to be involved with the ssdi. I cannot wait until this is all over with! It is nice to find support on here.

sad that the first thing they assume is a lawsuit will be involved. If the responsible parties would take responsibility-it wouldn't be an issue. You might have problems the rest of your life-that needs to be addressed.

Good luck. I know it's tough.

Of course you have PCS!!! Geez, some doctors really have no clue or interpersonal skills for that matter. Feel free to vent all you want. Thats what we are all here for! Although i've never met people on this website, i already feel such a strong bond with everyone because we all know what each other is going through.

Sorry to hear of your experiences.

Perhaps it is just me, but I refuse to use the expression "the new me".

I know life is a lot different, and one must make adjustments, but I am still the same person. Maybe I'm nitpicking, but I understand if other people want to use it.

Don't have insurance, but have sought out doctors over the past 14 months at times. Mainstream clinic doctors & alternative medicine ones alike have been clueless.

Probably never should have visited a single one. But my case may be a bit different from others.

Kelley84,

The doctors are mistaken if they are concerned about getting involved with an SSDI application. A personal injury lawsuit is a no win situation for many doctors. SSDI does not expect much of your diagnosing or treating doctors. The only involvement would be for them to list what limits they have put on your activities, such as, patient is not to continue playing contact sports.

MTBI's are one of the least complicated for them. If you injured your back, their diagnosis has more meaning. For PCS/mTBI, your State Disability Determination Service will schedule you to be evaluated by their choice of doctors.

I was sent to a psychologist who spent about an hour evaluating me and another hour writing his report. He approved me for permanent 100% disability. The person who reviewed my wage history screwed up my application so it was denied.

There is no real reason to tell your doctor that you are applying for SSDI.

Some doctors are under severe limitations from the health plan or insurance company. If they do not have a concise plan of treatment, they have a hard time justifying continuing to see you. Plus, doctors tend to be ego driven. They often do not like to be 'pestered' by patients they can not help. Sort of an, "If I can not help you get better, there must not be anything wrong with you."

Jeffrey,

The expression, "The new me" is valuable as an acceptance of one's current condition and the possibility that one may not get any better. In the short term, it helps one lower their stress level by learning to live as "The new me."

I count myself fortunate that even though my family doctor didn't fully understand he has been very cooperative and followed the lead of my neuropsychologist. My neuropsychologist is the one who TOLD me to apply for disability. I'm sure the reports from family doctor and neuropsychologist along with my written explanation of how this affects my entire life function, especially working, helped the decision be made to approve my disability in under 3 months.

Thanks for the reply. I now live very cautiously. Yet am not afraid. And do not feel any different as a person. No personality change, except increased caution & sadness/seriousness.

After thinking about that phrase, I realise the only "new" me is the one that is washed clean by the blood of my Savior, Jesus Christ.

If not for Him, I would've taken the easy way out long ago in this injury when the pain was unbearable.

Hope everyone is well. And they have success w/their doctors.

Maybe I'll try a neurofeedback person soon. Doctors seem so random to me.

Hope no else gets new injuries as well-

Kelley,

I'm so sorry for what you are going through! I can't imagine having to deal with all you are dealing with on top of your symptoms!

I had similar issues with Drs during the first 3 months of my treatment. When my neurologist told me that I should be fine by now, and that all the symptoms couldn't be neurological, but in my head.. I made the decision to keep searching until I could find a doctor that could help.

I fortunately was able to find an excellent team of Drs who have made all the difference in helpling me rehab to the point that my daily life is at least bearable. (Which is light years away from where I was during those first 3 months). Keep searching. Dont' stop until you can find someone who can help you live better.

Praying and sending good vibes that you can find the help that you need!

I wanted to thank everyone for the support. I hope to hear back from my SSDI application soon. I am not sure how involved other peoples neuropsychologists were with them but mine just did the report and explained my problems to me and I have not seen him since. He did suggest filing for social security. Does anyone know if there is any point in seeking out different doctors. Is there really anything that can be done? My psychiatrist does help me manage the anxiety and depression.

Kelly-

What symptoms are you still experiencing?

After finding a neuropsych who dealt mostly with TBI, I've been blessed to start getting the help I need. He referred me to vestibular therapy, physical therapy, a physical medicine and rehab dr, and vision therapy. All of these things have helped to improve my quality of life!

Vestibular therapy: Working with a therapist, I have been able to improve my balance and get rid of the 24/7 feeling of dizziness and nausea any time I moved my head, was in a car, or did anything physically with my body.

Phsyical Therapy: Many of my headaches are related to a neck injury that I incurred during the accident. This has helped to get my spine where it need to be, so my muscles are where they need to be and can actually support my head and neck again, rather then being locked up and pulling on the base of my brain/skull.

Physical Medicine and Rehab Dr: Prescribed medicines to help clear some of the mental fogginess, sleep medicine to help alleviate the insomnia, a medicine to work to try to prevent migraines, and an antidepressant/anti anxiety med. (I'm not generally a pill popper, but did some research and all seemed worth a shot to me, if I could feel better)

Vision Therapy: I now have a pair of glasses that help to filter out fluorscent light so that I'm not bothered nearly as bad by light sensitivity. I am also working with a therapist to get my eyes working together again, as I have some visual difficulties post accident.

I am by no means, suggesting any of this as a course of action for anyone. This is just whats working for me.

I guess what I'm trying to say is, regardless of symptoms there are things that can be done to help you rehab and feel better.

Wishing you the best

tell us more about the glasses that filter out the fluorscent light...are they colored? are they working well...and are they prescription? Do you find they help with night driving and the lights coming at you?

I am picking them up this weekend at Vision therapy. Yes, they are perscription. As they were explained to me, they have a film to help filter out the blue wavelengths of fluorescent light, (which I guess is what bugs people with light sensitivity?)

I'm not really driving yet, except short distances and not at night. But the anti-glare coating that is also on them, I would imagine would help with that.

For me, I wanted something that would make a computer screen more tolerable and also that I could wear indoors, so I didn't look crazy in my big dark sunglasses at the grocery store, at restaurants, etc.

I can post tomorrow once I get them and let you know what I think.