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-   -   "Well I'm starting to get concerned" (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/165718-im-starting-concerned.html)

xxxxcrystalxxxx 02-28-2012 01:12 PM

"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.

Ziggo 02-28-2012 01:32 PM

....
 
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..

greenfrog 02-28-2012 01:57 PM

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.

Klaus 02-28-2012 03:34 PM

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:

Mark in Idaho 02-28-2012 05:27 PM

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.

wdl6591 02-28-2012 07:21 PM

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.

xxxxcrystalxxxx 02-28-2012 09:19 PM

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.

Mark in Idaho 02-28-2012 09:26 PM

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.

xxxxcrystalxxxx 02-28-2012 10:03 PM

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!

Mark in Idaho 02-28-2012 10:40 PM

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.


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