Husband with PCS - neurologist did nothing!
 

Hi and thanks for reading this.

My husband was in an accident 11/30 and was diagnoses with post concussive. It's been 2 months and he's no better. Constant headache even with tramadol, ear rings, left side of face numb sometimes, vision blurry sometimes, it hurts to touch and i mean barely touch his head. The smallest bump on a car ride bothers him and he gets car sick.

Family doc sent him to Neruologist. We went today and he did nothing, said see ya in a month. We asked what he would do in a month and he said manage his meds.

No talk of physical therapy or anything! The doctor didnt even touch him, just looked in his eyes.

He's on tramdol, gabapentin and 800mg ibuprofen.

He's really upset after the dr visit today....I dont know what to do, i've spent hours here and other website but all i find is stories and no treatments.

Have you guys tried Acupuncture yet? It helps with the headaches a lot!! Some insurances cover acupuncture treatments....mine does. But even if i didnt have insurance coverage for it, i definetly would still be going because of how well it has managed my pain now and in the past with a back injury. Wishing you guys the best.

Did he have CT Scan or MRI to rule out major problems?

Numbness of face could be from pressure on a nerve.

For actual post concussion syndrome aka mild traumatic brain injury the treatment is rest and time.

I too see a neurologist who basically treat with meds - Amitryptiline, Tiozodine? I trie a few others - be careful with Ibuphrophen becasue of rebound headaches - they could only tell me the same - it takes time. I went through the neuropsyc testing which showed some severe deficits in line with a MTBI and other competencies I must have scored with in normal range

Sounds a lot like my neurologist. His RNs were far more informative and forthcoming with recommendations.

I think I was in a very similar situation.

I had a continuous headache. I was prescribed tramadol and the dosage was continually being increased by my Dr. because it wasn't reducing my pain enough. I couldn't be touched because the pain from being touched, even the most gentle of touches, was too great. We had to put up black out curtains in my studio because any amount of light was too painful for me to bear. Likewise any sound was very painful. After a few weeks I couldn't move at all because the slightest movement would instigate severe pain. My Dr. knew it was going on, but she was helpless to diagnose me beyond PCS. The first neurologist I saw kept telling me I was going to get better, but I was getting worse. My PCP referred me to a better neurologist, one she knew (her partner referred me to the first guy.)

The second neurologist guessed I was suffering from something called status migrainosis - which is an ongoing severe headache so she treated me for that. The treatments either didn't work at all, or barely worked.

After more than six months from the accident I was in, the second visit to the new neurologist, she figured out that the concussion I got had caused increased intracranial pressure. She ordered a spinal tap and the sever pain inside my skull went away within five minutes. The light didn't bother me anymore and neither did sound. It felt like I had been granted a miracle. (I was then hospitalized for about 12 days after the spinal tap due to complications.)

I believe my neurologist saved my life.

Apparently, It's pretty rare to happen with a mTBI. She says some people just get it and they are given a spinal tap and it fixes them.

I'm still recovering from the damage done to my brain, which has been exacerbated by the nearly six months of bed rest, but I haven't been in pain like that for over a year.

But, be careful, once your husband needs to get off the tramadol - the withdrawals from it are awful in so many ways. (Come to think of it though, the side effects from being on it were awful too.) Nasty stuff. I refuse to take any pain meds or muscle relaxers now because of it. You might also want to talk to your Dr. about the warnings of being a tbi patient and taking that drug - I didn't realize there were any until I had already been taking it on a regular basis for more than four or five months and was withdrawing from it.

a whole lot of time!

duhfur,

Welcome to NeuroTalk. Sorry to hear of your husband's struggles.

Has he had any work-up of his neck? The facial numbness can be related to nerves in his upper neck. The upper neck is often injured during a concussion, especially a concussion from an auto accident.

If he touches the sides of his head behind his ears, he will likely find some very sensitive spots. These can be the attachment points for the muscles that attach to the upper cervical vertebra.

The opioid pain med can be brutal. He may try a combination of 1000 mgs of Tylenol (acetaminophen) and 1000 mgs of aspirin. When taken together, they can be very effective. If the combo helps, he should skip the Tylenol whenever possible to prevent liver damage. Maybe a day off after 5 days on. His doctor or a pharmacist should be able to tell him more about the risks of continuous use of high doses of Tylenol. Rotating the Tramadol and other pain meds would be good.

How much gabapentin is he taking?

The tinnitus and head aches can go on for quite some time. He needs to make every effort to reduce stressors, especially auditory and visual stimulation. Resting in a dark room with soft music may help.

A Physiatrist (specialist in Physical Medicine and Rehabilitation) may be worthwhile. A Rehab Hospital often has good Physiatrists.

A Physical Therapist with good skills with whiplash injuries can be fabulous. There is usually a good amount of whiplash like injuries in most car accidents and concussions.

Neurologists are rarely much help with concussions. I am not surprised your struck out.

In the sticky thread at very the top of this forum, I have a post of tips for recovery and simply tolerating PCS symptoms. The heading says links, etc with a last post date of 1/20/2012. My post should be second from the last.

He needs to make some nutritional changes. No caffeine or alcohol or MSG. He should get started with vitamins, a B-100 complex plus some extra B-6, B-12, D, E, C, Magnesium, calcium, and Omega 3's and a good multi-vitamin. Stay away from the big brand names (Centrum, One a Day). They tend to be weak in dosages. GNC or Vitamin Shoppe have some good stuff. Even Walgreens has good brands. NatureMade is a popular good brand.

Meat protein is also good, pork has the most valuable amino acids.

The nutrition part of recovery is slow. The brain needs to detoxify before it can start healing. Expect a month or two of slow improvement.

And remember, if he feels tires or overwhelmed or just fuzzy brained, peace and quiet rest are the best things for him.

Going to work is not a good idea at this stage.

He is fortunate to have someone like you to look out for him.

BTW, There is some good information online. Check out the video series on YouTube called "You Look Great" by John Byler. It is 6 segments that take about an hour total. http://www.youtube.com/watch?v=x9Xso...ature=youtu.be

There is also a great TBI Survival Guide at www.tbiguide.com

Hope this helps.

My best to you two.

Yeah. My neurologist has done almost exactly the same thing for A YEAR now. Don't hold your breath.

Of all the many varied medical professionals I have seen, my physiatrist seemed to be the most helpful. Of course, I am a year in. Not sure who or what would have been most helpful early on.

The basic answer, as others have stated, is rest for the body and rest for the brain.

Neurologist wants to put me on a med for alzheimers??? I have some ST mem issues from car accident and in late 30's - they also said I would benefit from seeing a psyciatrist? Is this normal treatment for PCS???? I do not know whether to be depressed about this or angry!!

Several Dr.'s I saw wanted me to see a psychiatrist. I think that's normal. Yes, it bothered me a little, but they didn't know me before the accident; they didn't know how I spoke or how I behaved or what my level of cognitive functioning was before the accident. If they had, they might have been more alarmed about the status in which I had met them.

If you do, make sure you see a good one, one who also knows about brain injuries.

The one I saw told me that most Dr.'s don't realize how sensitive tbi patients are to medication. He would not recommend any medication for me without neuropsychological testing.

I don't think he thought what I was going through was abnormal.

Thnaks EstersDoll,

I did hav ethe Neuro testing - I supose I am more concerned how others perceive it than myself - I know I am not a mental case but since al of this happened from a MVA - I of course will be dealing with the insurance company who would like to spin that in the opposite direction. Maybe I should for my sanity. Have you or any others know why I would be prescribed meds for alzheimers? The doc said it was for off label usage but again the ins company will spin this into something else

Yeah that's tough.

My compact car was TOTALED between two large SUV's while we all at a dead stop by a truck that was speeding and rammed into the SUV behind me which pushed that SUV into my car and my car into the SUV in front of me. I guess the estimate for repairing frame damage was halted once it reached the value of my car, which was $8000, but the estimator said it would have cost a lot more than that to repair everything. And the guy's lawyer (probably provided by his insurance company) told my attorney that the accident wasn't bad enough to cause any physical harm. :rolleyes:

Insurance companies and attorneys are just going to say whatever they can to pay as little as possible. I guess that's their job.

But it's your job to get better. So, really, try not to worry about that stuff.

Just focus on getting better or not.

I don't know about you, but I'd much rather be ALL better then win some lawsuit or settlement.

My dad is the one who got me to hire an attorney. It was about a month since the accident I was in and I did NOT want to hire an attorney at all. I did NOT want to deal with that stuff. I couldn't. I hired an attorney and I think that just made me more anxious, just the whole idea of dealing with a legal mess made me feel awful. Probably because I couldn't handle it cognitively - the whole idea of it worried me sick - I couldn't even string a coherent sentence together, how was I supposed to deal with legal stuff?!?!?

But my dad'd also the one who always told me to just focus on getting better. (Come to think of it, that's what the lawyer said too.)

It turns out the guy who caused the accident I was in was not covered for enough to even pay for even 20% of the wages I've already lost and I'm still losing. Not to mention all the medical bills, and what my boyfriend is out from taking care of me etc. etc. The guy probably doesn't have any assets either.

Once I found that out, I was a lot more relaxed about the whole thing, because it really doesn't matter. C'est la vie.

All that matters is getting better.

I just wanted to say...I think we all get the same treatment from our neurologists. There is really nothing they can do but run tests like MRI and EEG, treat the symptoms individually by prescribing medication and send you on your way. Some neurologists don't even give you suggestions on what you should do to improve your recovery. That's what both the doctors I've seen did.

Another thing your husband can do is look in to therapy. There are quite a few threads on here about different therapies. Just do a search.

Rest and time. Those are your best friends when recovering from a brain injury. "Stress and anxiety are your enemy", to quote someone here at the forum.

He's had CTs, xray, MRI and they show nothing. Goes to chiro regularly even before accident and he just adjusts him as always, he doesnt seem to know what to do either. Been doing bi-weekly massages but they dont help headaches, he has lots of knots in shoulders/neck though she works on.

I think there's something going on with muscles/neck/shoulders that causing the head pain. Any thoughts on that?

He's on 400mg gabapentin.

Do we need referral for physiatrist or physical therapist? I really think physical therapy is way to start.

Nurtional: hasn't had alcohol since accident. Only caffine he has is 1 coffee in morning, otherwise he said he wants to fall asleep at work. Not sure what MSG is, so i'll look ito that and upping his vitamins, he's just taking centrum now. Thanks Mark in Idao.


NightNurse30: Haven't tried accupuncture yet but want to. The dumb neuro we saw said it didnt work and was any relief would be his just believing it, same with chiro. Another reason we dont like him. Accupuncture is something we are prob going to try.


Esthers: Wow what an ordeal, you've had. I'll keep that in mind and mention it to new another neuro if we can find good one.

Yes....definetly one more reason your neurologist sounds like an idiot. Complementary Therapies along with medicine, good nutrition, rest, and good sleep all combine to help the PCS go away. I also get B12 and B6 shots along with a good B-balanced complex, omegas 3's and multi-vitamin. Acupuncture is very widely used in society today and as a nurse....I'm 100% supportive of it and its ability to decrease pain.

My hospital also has an integrative medicine team that includes a Healing Touch Practicioner who give relaxing, nurturing energy therapies to patients in the hospital who are not responding to medicine and have severe pain issues, anxiety, nausea from chemo, and other ailments and its made a world of difference. I myself am taking Healing Touch and doing treatments in my ICU on my patients and will see someones pain go from a 10 to a 2 after a treatment. With evidence of HR decreasing along with a high blood pressure go down to normal. Its pretty amazing when you have the monitor to show you along with your patient falling asleep or stating their pain is barely there anymore.

You can find a practicioner at www.healingtouchinternational.org.
Most are nurses who took an extensive program to become certified. So their understanding and knowledge of disease, illness, and injury is very broad. Hope you find something that works soon for his pain!

Sounds like he goes to a wellness chiro. Regular chiro visits are just to keep the chiro in ca$h. He should not let the chiro do any twist and pop neck adjustments. They can be just keeping his neck traumatized.

The massage therapist sounds weak too. If he has muscles spasming in his upper back, shoulders and neck, he needs to find someone who understands this area better.

Look for someone who knows myofacial release. They work on the nerves to get the muscles spasms to release. Some massage therapist do it and some PT's.

btw, MSG is MonoSodiumGlutamate. It is a flavor enhancer used in many processed foods. Also, avoid any processes soy products. They are high in free process glutamate.

The Centrum is worthless because the dosages are so low. They are based on the RDA values that are completely inadequate for an injured brain and body. No better than having a bowl of Total for breakfast. All sizzle (hype), no steak (value).

Find him a B-100 complex plus the others I mentioned.

Observe him sleeping. Does he have any irregularities in his breathing? You may need to observe for a hour or two before seeing an abnormalities. Poor breathing during sleep can be a big cause of daytime sleepiness, plus the PCS causes too.



jinga,
Alzheimer's meds are sometimes prescribed for concussions. This is a "try this and see if it helps" idea. They rarely help at all. Then you have to deal with the side-effects, too.

My best to you all.

Thanks - I will try it at least

One more thought about your husband. If he's falling asleep at work, perhaps that's an indication that his brain still needs more rest. Maybe the neurologist would provide a note that he needs to take time off work in order to rest?

Sure! :D If he's got all those knots and spasms in his neck and shoulder area, they are most likely pulling on muscles located on the skull. Experts hypothesize that's one reason why we get headaches. I get tension headaches (some of them are brutal) from stuff like that (knots in my shoulders and neck.)

I think mark is right though, your massage therapist should be keeping those knots well at bay if you're seeing them twice a week. Myofascial release is great if you can find a practitioner. It can be quite painful though, just something to be aware of. If you want to stick with massage therapy, or try both, find a good deep tissue massage therapist. That Swedish stuff and other massage techniques usually don't even scratch the surface of some of the knots I get, but some good deep tissue knocks it right out! Again, deep tissue is considered to be painful to some people.

I personally find most deep tissue to not be painful at all, or very rarely and minimally, but did find myofascial release to be very painful but well worth it! But I haven't had either since the mTBI so I don't know what it's like with a concussed brain. (I just can't afford it due to the financial woes the mTBI have brought to me, but I want some! :D )

After the injury I *did* have regular acupuncture for a few months. (I have a friend who does it and cut me a generous break on the cost.) And I do think it helped to cut down my pain significantly. I think it worked better for me than the opiates and narcotics I was prescribed. My Dr. and acupuncturist both told me separately that everyone responds differently to acupuncture and that I was lucky it worked so well for me.

As EsthersDoll said, myofacial release can be painful but worth it. We have a joke in my family. We go to the physical therapist so she can leave her finger prints in our muscles.

But, the relief from myofacial release comes quickly. You may need to ice when you get home but the release of the muscle spasms is well worth it.

I would take myofacial release over deep tissue massage any day. Plus, some deep tissue massage therapists are more brawn than brains (skill).