Hi everyone.

This is my situation. I will be at two years pcs in a couple of weeks. As far as doctor's go this is my history...

Saw GP for two months after accident... Then referred to...

Neurologist for about 3 months- did mri's, eeg.. tried a bunch of meds. He then prescribed a medication erroneously for me. When he asked about my medication schedule he freaked out about the dosage and told me to stop taking it. The next time I mentioned it he brushed me off saying I should go back to GP and that I was better. Putting two and two together he was covering his back. He did not apologize but said "you're young, you' re fine" (side effects affected my heart).Of course being a perfectly healthy person before my PCS I had no heart tests. Now, I have a small issue, but an issue neverless but that can't be proven related directly to the med (Imitrex). Long story short I felt discouraged with my neurologist experience.

GP- saw him until about 1 month ago . He was the primary source of medical supervision that I have been having since Nov 09. To be honest he did not do much for my PCS but listen and give me prescription for PT and Zofran. Honestly his favorite sentence was "Well... We don't know much about brain trauma".

The last appointment that I went to he said some innapropriate and unprofessional things to me.I was speechless and shocked. I don't want to get into it but I had to change doctor's immediately. It has been about a month and I am still affected by it just typing it.


I have now been assigned a brand new doctor. I have been in one time for an unrelated issue (needed some antibiotics) and initial assessment of my health history. She did not discuss PCS at all and to be honest I was surprised but figured that she was not familiar with it. Also I was quite sick and just figured she only wanted to discuss that.

So... now I given a neuropsychologist's name and recommendation. Should I go? I did not have any type of test/ assessment initially after the injury. I would need assistance with transportation to and from the office and it will take away from my rest time. Will there be any treatments / exercise that I will be able to do?
I would love to have someone knowledgeable treating me, but I am just causing a lot more stress? I am hesitant to see another doctor.

Mark and anyone who has been to a neuropsychologist, will you please add your two cents?

Thank you all!

First, a Neuro-Psychologist Assessment (NPA) is very expensive. It is very difficult to get it covered by insurance if you have any now.

Second, a good NPA will only tell you what your current condition is. This can be helpful as a confirmation of your condition but will not usually lead to any better treatment. It can lead to better planning of tasks and activities. If you are told you have very poor short term memory, you can learn some work-arounds.

You complained.. <Honestly his favorite sentence was "Well... We don't know much about brain trauma".>
Your GP was being truthful with you. Current medical knowledge about concussion suggests treating the symptoms.

Other than diagnosing and treating issues such as a neck injury, there is not much that can be done by the doctors. There are Occupational Therapists who can teach you coping skills and work-arounds.

The biggest problem is we are the invisible wounded. All of our struggles and symptoms are invisible and subject to our own interpretation. This leads some doctors to saying we are making them up to get attention or whatever. Hypochondriac and somatoform are not uncommon terms they use to describe us.

What specific symptoms are you struggling with now?

What are your current capabilities and limitations?
Activities of Daily Living (ADL's) and work capabilities?

What do you hope to achieve from the NPA?

Thank you for responding.
What specific symptoms are you struggling with now?

Debilitating headaches, Fatigue, Nausea, Weakness, Cognitively... It is hard to say. I know that I have some cognitive impairment as far as concentration, will still mix up words when I am tired, irritability. Generally can't handle stimulation. But I have never been tested for impairments. I know that I could not handle taking a class or being in a high pressure critical thinking job. Even typing these posts makes me weak.But, people who do not know me personally wold say that I act normal.

What are your current capabilities and limitations?
Activities of Daily Living (ADL's) and work capabilities? I can perform my own ADL's but grocery shopping is still exhausting and occasionally need cooking assistance. I have to stay at home most of the time. Can't walk longer than 40 minutes without having to lie down (on a good day). Constant headaches. Can only drive around my small town for about 30 min.Occasional outing which have gotten more frequent. I am unable to work because of these limitations.

What do you hope to achieve from the NPA? Not sure... thought I'd ask so people could tell me. If there is nothing you think that they could do then I understand.

I read a previous post where the author did see a NP and benefitted from the exercises given.

I have gotten better over the 2 year period I was just wondering wether I could get any more help. I am not 100% sure but I think that the visits would be covered.

Bottom line: Is there any type of specialist that I can see?

If it is covered by your insurance, I think it would be worthwhile.

I have had a WONDERFUL experience with my neuropsych. 2 weeks post accident my PCP turned me over to a neurologist. He "treated" me by telling me to rest and at 3 months said, this can't be nuerological any more, it's all in your head. I was so appalled, I started researching concussions in my area and got some advice from a few people I knew who had sports TBI. That is what sent me to my neuropsych.

So I guess I say go for it, with the caveat that it's only useful if you have a neuropsych who works primarily with just TBI patients. Mine did testing, and then referred me for vestibular therapy for balance and dizziness; physical therapy for my neck and back; vision therapy for visual problems; and a physical medicine and rehab doctor to help me work on nutrition and got me started on meds for migraines and anxiety.

Without this help, I think I would still be stuck back where I was 4 months ago, when I was just resting. I still rest constantly, but doing these various therapies is making daily life more bearable and liveable.

So if it's covered, and it's someone who knows TBI well, then I'd say go for it.

smilin,

You NP is one in thousands. Referring out is so not common to NP's. The referrals you got are of the most benefit to recovery.

From what I have experienced and read on TBI legal web sites, NP's are either biased against long term problems from concussion, especially concussion that did not have a Loss of Consciousness (LOC) or of the belief that recovery is psychologically based. Very few will actually accept the organic nature of PCS and direct the patient to appropriate diagnostics and treatment. NP's often think they have all of the answers.

Finding one who actually takes an interest in your recovery in a comprehensive way is fabulous.

The most important value of an NP in my view is two fold, to identify and quantify any dysfunctions and to direct the patient to help with coping with those dysfunctions with the possibility of therapies to overcome or reduce such dysfunctions. i.e. Work-arounds, accommodations and coping strategies.

Getting referrals to the other specialties is just icing on the cake. Good for you. It would be nice if there were other NP's for all of us to see.

postconcussion,

An occupational therapist can evaluate your ADL's and direct or counsel you in strategies.

The headaches and nausea are hard to treat, or at least hard to find a doctor who is knowledgeable at treating if they are concussion related.

Good neck injury diagnostics and therapy can be valuable since neck injuries can be the cause of headaches and headaches can impact nausea.

Sometimes, like smilin said, a specialist in Rehabilitation and Physical Medicine can help, if you find a good one. I have been seen by three. Only one was worth the time. He directed me to a fabulous Physical Therapist for neck and upper back issues.

I spent $18,000 searching for help and the insurance companies spent about the same. Only about $7,000 was worthwhile. The rest was a waste of time and money.

It sounds like you should get an application in for Social Security Disability Income. Your current condition from a functional aspect sounds like a SSDI qualifying disability. If you are making less than $1,000 per month due to your condition, you will likely qualify. SSDI pay is not much but it helps and includes Medicare.

As smilin said, do some research to find a NP who specializes in mTBI. Even then, the value of the NPA is questionable. The Halsted-Reitan battery of tests is the gold standard for mTBI.