[darcy28]

Hello,I'm new to this forum.
I hope this makes sense and hope I posted in the right place.
I'm not myself of late and since I'm not feeling so hot I hope I can make this short and not ramble.
I was told I had PCS and to make an appointment with the neurologist.
Can anyone give me some advice on what questions to ask and what to expect for my first visit?I would greatly appreciate it.
I am feeling anxious about the visit as I don't know anything about this condition.
Some of my sypmtoms are:
I can read,but slower than normal and can only read outloud for about one sentence then have to stop.
I can't take moving objects in my eyes view and am sensitive to sound and light.
I have dizziness,lack of focus that comes and goes and feel shaky but my body is not moving.
I have difficulty with even the simplest of household tasks:laundry,dishes.
Overall I feel like I'm "off" and just not right.

My injury was due to an accident.I was hit at the top of the head with a door while bending down.I've had two CAT scans.Should I ask for an MRI too?
How long can this last.What should I do if it goes on and on?

[Mark in Idaho]

darcy,

Welcome to NT. Sorry to hear of your struggles.

First, an MRI will not be of any value. Most neurologists are not much better. I would suggest trying to get an appointment with a physiatrist who has a good reputation with concussion. They are listed under Physical Medicine and Rehabilitation and are often associated with a Rehab Center or Hospital. You may benefit from a neuro-ophthalmologist visit. Also, a vestibular evaluation will likely help.

Unfortunately, there is rarely a single specialty that can address all of your symptoms. It is usually best to treat them individually but in a coordinated way. In other words, each clinician/therapist knows that you have other clinicians/therapists working with you. This coordination can often be handled by the Rehab department.

Regarding do it yourself therapy, You need to get good restorative sleep. If you wake up after a normal nights sleep but still feel off or quickly fatigue and feel off, you are not getting good sleep.

Limit alcohol and caffeine to one serving a day or so. Eat healthy with a focus on anti-oxidants, B-6, B-12, Omega-3's, folic acid,

Limit the chaos in your environment such as excess noise, voices, light, visual stimulation, etc. The brain needs a serious rest from stimulation. Foam ear plugs can be a big help. Break you day down into single tasks. Trying to multi-task will likely overwhelm you. If you can use lists, they may help. You may need quiet while you are working on the single task. I have found specific music styles that seem to match my brain's cadence.

You listed general symptoms. If you could be more specific about your struggles, there is likely someone who has a way to work-around or accommodate that specific symptom.

Concussion recovery is about preventing or avoiding the triggers that aggravate your symptoms. By linking together symptom free or reduced symptom days, the brain gets a chance to rest and heal. It is counter productive to try to push through your symptoms.

I have likely broken my own advice by presenting too much information for you. Sorry.

There is a very good resource at http://www.drakecenter.com/file.axd?...vivalGuide.pdf. When you have some working brain cells, try to check it out. You can print it out for reading later. It will help you understand some of your symptoms. If you have family to help, ask them to read through it. They will likely have a number of "ah ha" moments as they recognize your symptoms. It is a great help when your family can recognize your symptoms as real and caused by your concussion.

My best to you.

[Margarite]

Originally Posted by darcy28

Hello,I'm new to this forum.
I hope this makes sense and hope I posted in the right place.
I'm not myself of late and since I'm not feeling so hot I hope I can make this short and not ramble.
I was told I had PCS and to make an appointment with the neurologist.
Can anyone give me some advice on what questions to ask and what to expect for my first visit?I would greatly appreciate it.
I am feeling anxious about the visit as I don't know anything about this condition.
Some of my sypmtoms are:
I can read,but slower than normal and can only read outloud for about one sentence then have to stop.
I can't take moving objects in my eyes view and am sensitive to sound and light.
I have dizziness,lack of focus that comes and goes and feel shaky but my body is not moving.
I have difficulty with even the simplest of household tasks:laundry,dishes.
Overall I feel like I'm "off" and just not right.

My injury was due to an accident.I was hit at the top of the head with a door while bending down.I've had two CAT scans.Should I ask for an MRI too?
How long can this last.What should I do if it goes on and on?

I disagree with Mark about the neurologist. While it may be true that there are many bad neuros out there, the one I saw was amazing!
He knew exactly what kinds of problems I am having and asked the questions that would prompt me into bringing up those problems, so if you could make sure to find a good one then it might really help!

Now as far as an MRI, my neuro and my primary doc had me get an MRI of my head and neck and also an MRA of my head. It all came back normal.

When you see the neuro, if you have trouble remembering things on the spot write down every sort of problem you are having. When those problems occur, what causes them, what makes them better, what you have tried to help you deal with them, any medications you are on, any allergies you have had, any testing you have had done since the accident and maybe even before (the nurses in the office will be able to say what he wants to see).

The more info he has the better. When I had my first appt I had been dealing with headache, nausea, dizziness, struggling with thinking straight, sensitivity to light and sound, and all these would be triggered in a very bad way if I raised my heart beat at all.

Well, he gave me a medication to deal with the headaches (my most troubling symptom) called Fioricet and it is amazing! I have to take it before the migraine begins and then I just take another whenever I feel it coming on. I have two more weeks at home before I go back to college, so I am experimenting with how little I can take and still be OK until bed.

I say try the neuro, making sure he is a good one with lots of PCS experience, it won't hurt too badly and it might help a lot.

Good Luck!

Margarite

PS: He also said that reading for fifteen minutes a day and then quizzing yourself or having someone else quiz you on a few details from the reading will really help concentration and memory problems.

[Mark in Idaho]

I agree with Margarite that there are some good neuros' The problem is they are very hard to find. Going to a generic neuro can be problematic if he/she is not a believer in Post Concussion Syndrome. Many will ask about the impact. If they think it was just a minor impact, they may discount any concussion concerns. This is because of a belief that concussions only result from intense impacts. They do not believe in low impact concussions. If they are not believers, they can make entries in your medical record that can be detrimental. They can write 'somatoform disorder' or other diagnoses that will be hard to overcome.

This problem is more prevalent in "managed care" health insurance plans. They have prewritten protocols of what is the minimum cause of a concussion.

I hope you do not get one of these neuros.

The reason an MRI is not needed is because most MRI's are only 1.5 Tesla. It takes a much higher Tesla level ( 6 or higher) to image the microscopic damage from a concussion. 6 Tesla MRI equipment is more likely found in a Med School hospital where it is used in research.

Normal Tesla MRI's end up just being annoying as the PCS patient has to deal with the intense noise and possibly claustrophobia.

As Margarite says, have a list of your symptoms. It is best if it is written down. Try to avoid 'feeling' oriented symptoms. A better example would be: When it gets noisy, I cannot get my mind to focus on a single thought. The wrong thing would be to say, I feel odd or out of place.

And remember, Margarite's neuro was one in a thousand.

[BeccaP]

I agree with both Mark and Margarite. I've had a terrible experience with a neuro who told me I was making it up and then found a fantastic neuro who has helped me tremendously. I would check the online doc rating sites and look for a doctor who listens and cares, that goes a long way. Call their office and ask if they have experience treating PCS, how many people they've treated etc. If I'd done that from the beginning I would have spared myself an awful experience. I know it's really hard to do all the leg work but it's worth it.

They will do a basic neuro exam, which I passed because it didn't check the areas I had problems with. The PCS symptoms are subtle to another person/someone who doesn't understand. It seems like some doctors just don't want to work with you if you don't fit into a certain peghole. You don't want that type of doctor for this kind of injury.

I had to write everything down because I knew I wouldn't remember, plus I had a hard time answering questions, my brain couldn't connect with my mouth properly. With my type of insurance it has been a lifesaver to find the good neuro because he's been able to get me other referrals and prescriptions I needed. It seems like many of the PCS symptoms heal with time, rest and good nutrition but there are others that are helped along with other providers and medication, different for different people.

Best wishes!

Becca