"Well I'm starting to get concerned"
 

"Well I'm starting to get concerned, your symptoms aren't improving and I think your situation may be permanent." Words you never want to hear from the doctor. Basically heres some more meds and we'll add Lexapro to help alliviate some anxiety symptoms. It's been almost eight months. My Neurologist said by six months the brain really doesn't heal much after that. I've also heard it can take up to 18 months. When I said this to the doctor he reiterated that six months is healing period. I may improve a little bit but he's doubtful. So now I'm left with...now what? I contacted my workman's comp attorney and they dont do social security claims.

My question is, " Do I contact an attorney now? Even if enough time hasn't gone by?

Has anyone else had significant healing after eight months?

I asked him about rehabilitation etc and he says the headinjury clinic should be doing this stuff. He's not even sure why they sent me back to him when they have a neurosurgeon and neuropsychologist.

Needless to say I'm real down. I think I'm in shock. Not sure. Today is my son's birthday and I'm not feeling it. So I have to snap out of this at least for a little while and try to obsess.

I did mention the whooshing and head pressure and the doc had no words of advice on that one. He did say he can order another mri if it would make me feel better.

BA humbug.

....
 

Im really sorry to hear that. Happy birthday to your son, you should cheer up a bit for him.

Iv no idea how i will feel like 6 months later, but for now iv healed very well, having just mild headaches, and today feeling like im drunk but im not lol

I can do anything i want to at home, though my muscles hurts from therapy but im feeling great. Healing well even though my MRI results came pretty terrible..

From everything I've read, your neurologist's statement seems inaccurate. Look at all the athletes for whom recovery has taken a year or more: Corey Koskie, Mike Matheny, Justin Morneau, Sidney Crosby, David Perron, Patrice Bergeron, to name a few. Some returned to game action (Perron, Bergeron, Morneau), others have made a good recovery but chose to retire from playing sports (Matheny, Koskie), and others are not fully recovered but have continued to improve beyond the six-month mark (eg, Crosby).

Even on this site there have been people (me included) who have continued to improve beyond six months, and some who have made a decent recovery over a longer time frame. A friend who has had multiple concussions told me it took 14 months for her symptoms to go away after her last one (she's now doing well and, apart from some memory issues, is symptom-free).

This doesn't mean that a minority of people don't have lingering (even lifelong) symptoms, but I think six months is way too early to concede that no more progress will occur.

At 'almost 8 months' I too was very low and felt my recovery had stopped was stuck in a rut avoiding TV, books, loud music and anything else fun because it all overstimulated me.

I've just gone 11 months and am improving pretty fast. Have improved fastest of all between 9 and 11 months (a time period which coincided with me starting to really hit the blueberries, decaff green tea, turmeric, fish oil, cherry juice, eggs and aerobic exercise). Doc has said he expects me to go on improving for up to two years if I don't feel completely better before then. Don't know where he got that figure from but nothing that's happening to me gives me any reason to disbelieve him.

So hang in there, there's plenty to hope for yet. Most of these time periods doctors talk about seem pretty arbitrary to me.

The other day I took a psychiatric patient through the London Underground and had to not only deal with it myself but also look after him and assess whether he could manage such a journey independently. It doesn't get much more overstimulating than that - but I had no problems and no after-effects. This is a massive improvement since my eight month mark :cool:

There is a comment made by an expert. He said,

If you've seen one head injury, you've seen one head injury.

crystal, That doc was speaking above his pay grade.

It would not hurt to get started with a SSDI application. You do not need an attorney to apply. The standard is to have a disability that is expected to last longer than one year. Your doctor has just given you than prognosis. Whether he is accurate or not, it is enough to get an SSDI application started.

You can start the application process online at the Social Security Administration website. You do not need to complete the application is one sitting. Once you get started, you can log back in an continue working on it.

The process is worthwhile as it helps you put you condition into words.

So, go ahead and move forward. At least you will feel like you are doing something.

My best to you.

I agree with Mark that getting started with the SSDI paperwork can't hurt and may prepare you for whatever is coming down the line.

I also agree with Klaus. The neuorologist that I've been seeing has told me that healing of the brain is a long, slow process that can take years. He also indicated that most of the healing in my case (mTBI) would take place in the first year.

The greatest impact to my recovery has come from the neuropsychiatrist, who is the most informed ie TBI and PCS. She has also indicated that the healing process could take over a year. She has also indicated to me that I may not come back to 100%, but that most PCS patients she has worked with attain well over 95% of their preconcussion status. She also added the aside that since there is no preconcussion benchline to measure against in the majority of cases, the comparisons are somewhat relative and are generally based upon patients feelings, not hard data.

It's funny, she also told me of the line "if you've seen one TBI, you've seen one TBI" as being a common axiom in the teaching of neurology and neuropsychiatry.

I would add that your neurologist is an insensitive bonehead with no bedside manner.

Once a therapist (LSW) told me that therapists and psychiatrists often deal with thoughts, feelings and other intangibles and that Doctors tend to deal with problems that can be "touched" and seen. Doctors do not like dealing with intangible conditions because they don't like not being able to effect a cure. Doctors often dislike treating conditions like migraine headaches because they are often ineffective. I believe PCS may fall under this heading. Doctors do not like to be ineffective. That may be why your's is sending you back to the clinic for further treatment. If they have performed CT and MRI and your brain is "structurally" sound, it may be the best course for you.

Good luck.

Thanks everyone for your great advise. I do agree that the MD was a little harsh. He couldn't give me any answers,just a hand full of scripts. It's weird every MD I see bounces me back and forth. I makes no sense to me. My major concern is the head whooshing sounds and the feeling that my head is going to blow off its shoulders. They say it could be anxiety but I dont think so. I get this feeling even when I'm laughing with friends. Of course all the other symptoms concern me but I'm just afraid the whooshing pressure means something else if going on. I'm wondering if I should try and see a specialist for pcs. I live close to Boston and New York. Tomorrow I will search. Again thanks for all the friendly advise. Hope your all having a pain free day.

If you are near Concord Mass, Dr Robert Cantu is an expert. I think he is connected with Boston University Hospital. He may be able to refer you to someone with even more expertise. There is some good research going on there.

What meds have your various doctors prescribed? Sounds like a "Try these and see how they work" type of medicine.

Im on 100 mg. of amytriptalyne, vicodin, clonazapam, fioricet, flexerall and they just added lexapro. I haven't started lexapro. Im waiting for wmc to approve. Most days I only take the amytriptalyne and clonazepam. The others are as needed. I will look this doc up tomorrow. Thank you mark!

That is quite a cocktail.

The amitriptyline is a very high dose.

The Flexerill is considered similar to amitriptyline.

The Fioricet has both caffeine and a barbiturate.

I wonder if you would do better with a smaller dose of the amitriptyline plus the Lexapro with the pain meds as a back-up or break through med.

The mix would tax anybody.

What is the clonazepam prescribed for? It can be brutal.

Do you have skeletal pain?

Have you had your thyroid and other hormones tested?

The 'throw a drug at the wall and see if it sticks' can be infuriating.

Maybe Dr Cantu can direct you to some good help.

I was on 50 mg of amitriptalyne. The clonazipine is for sleep and anxiety. I have such a hard time sleeping. I get sore in my neck sometimes. When I get tension headaches. The rest is for the pain.

I switched from clonazepam to Neurontin for my sleep problems. If is much better. No daytime drowsiness. No feeling of being sedated. It just lets my body and mind relax.

The doctors don't need to live with the long term effects of the clonazepam. They don't care, especially if they are WorkComp docs. You need to speak up for yourself.

Maybe you pharmacist can help you get the docs to listen and be better help.

Apparently I have to get the head injury clinic to start prescribing. I hate the vouching bouncing. I get confused and that doesn't really help. Thanks again mark.

I'm also taking amiltriptyline. I just had my dosage ingreased to 50mg from 3omg.
My neurologist indicated that dosages up to 150mg are not uncommon.

I also take Depakote (750mg, twice a day) as a prophylactic for headaches.

I also take mirtazapine (54mg), aspirin (81mg) and Crestor (10 mg) daily.

The Depakote and Amiltriptyline are meds prescribed with the PCS symptom onset.
The others I was already taking prior to the PCS.

Just wanted to add my .02 here.

The most significant healing leaps that I have perceived were both past the one years mark from the initial injury I sustained.

Now, my case is complex, because I had iicp for the first six months after the initial injury... I've asked my self, "At what point do I start this healing timer" so I can accurately judge when it's been a year; from the accident/initial injury or from the spinal tap that relieved the iicp?

The accident I was in happened in July 2010. The spinal tap was performed in Jan 2011. The first major perceivable leap in my recovery was in Sep 2011 and the second one happened just a couple of weeks ago in Feb 2012.

When I say perceivable leaps, I mean that my brain was able to filter more background noise out from what I was trying to focus on. And this happened twice to me in a very short amount of time, within minutes I perceived a huge difference between what my brain was filtering before and how that amount increased. Each time, the amount went back and forth a few times within those few minutes until it stuck. This helped my overall functioning in many ways, since I had more cognitive resources to work on things other than consciously trying to not pay attention to noises and visuals that the brain normally filters out for people. And each time was a very noticeable effect for me and my boyfriend who was with me each time. He could tell the difference in my level of functioning just sitting in front of me and it improved my speech, articulation and understanding of my surroundings, etc.. I feel like each one was a miracle and I'm very grateful for them and all the other healing I have experienced.

Other than that, I've had steady, ongoing improvement since the spinal tap. (Before the spinal tap, I degraded a great deal in the six months after the injury but before the iicp was relieved.)

I had friends visit me every week, or twice a week, for the first six months after the spinal tap who said they noticed distinct improvement with me every time they saw me, which would have been every 4-7 days or so.

I started working again, albeit part-time, in Aug 2011, and my colleagues have noticed steady and marked improvement in my functioning levels overall since that time.

It's difficult for me to really perceive, or label what the improvements are other than vague ideas, since I never had neuropsychological testing and don't know what all the different specialized areas of cognitive functioning are called. But one week I will just notice that I have more reasoning skills. Another week, I will feel like I have more control over my emotions. While yet another week, I will suddenly realize that it's easier for me to speak to someone over the phone. And I know that my working memory has improved too.

Playing games on Lumosity has helped me to notice a difference. I notice that I am able to play the games much better than when I first started playing them, and generally from one week to the next as well.

I haven't come close to my previous functioning level that I had before the accident. But I'm a LOT closer now than I was one month ago, and I was a lot better one months ago when compared to how I was functioning four months ago, etc..

Since I haven't experienced any kind of real "plateau" yet, my family and friends and I are still expecting me to get very close to what my normal is. When I worry about whether what impairments I'm living with now will be permanent, I am told, "there's no evidence yet that you're not still improving". And that's true.

I try to keep in mind what the neuropsychologist wrote in that tbiguide, and I'm paraphrasing here, but he says something to the effect of: the first two years can yield a lot of improvement. So I try to keep myself calm about the "timing" of it.

I've never been a patient person, and recently as I've improved my patience seems to dissipate even more in regards to when I'm going to be normal again. But I try very hard to remember that there is still a possibility that I will get better and to just calmly deal with whatever perceived disability that I'm dealing with as a temporary nuisance. And that brings me a lot of hope. And that hope helps get me through every day feeling at least a little better than if it wasn't there.

What is an iicp? im sorry I may have read it before and forgot. I am starting to wonder if I have too much cranial fluid based on.my symptoms. Is that what you had?

Increased Intra Cranial Pressure

A increase of the Cerebral Spinal Fluid pressure.