Help for spouse with PCS
 

Hello my wife obtained a concussion 2 months ago. As she closed the car trunk on my car (which she never uses) the bike rack hit her on the head. She doesn't remember the actually hit, blacked out for a second, and had a awful ringing in her ear and pain on her head.

This happened on a Sat and went to work the following week which worsened her symptoms to the point she was in bed for two weeks b/c of nausea, light sensitivity, headaches, etc. She has had CAT scan which was negative. She also saw Neurologists last week (8 weeks in) and diagnosied her with PCS.

She is now two months out. She has gradually improved and now is dealing with fatigue. Also, headaches return if she outside in the direct sun, too much mental overload from situations that require mental concentration or gets too fatigued. She still can't work.

Thanks
Frustrated Spouse

She is out of work for now. I am very frustrated with the situation b/c I can't help her. Also,b/c this changes our financial situation a lot. Any advice?

Is there hope for her? I'm very frustrated and try not to show it but it does come out occasionally. I try not to b/c it adds to her symptoms. We have two young kids ages 6 & 2.

I understand your frustration
 

Hi Frustrated Spouse,
There is definitly hope for you and your wife but you need to give it time (which is difficult). My wife was in a relativly minor car accident 22 months ago. She was diagnosed with PCS 2 months after the event. We have been to many doctors for answers and treatment. She is heavily medicated and is still in pain but we still have hope even though it is very difficult to keep hoping at times. If I look back I can say she has improved over time but we are far from being back to where we were. It is rare for someone to have the disorder as long as my wife has and they say in many cases in can be permanent so the odds are still very much with you and your wife for a complete recovery.
It is not an easy thing for us husbands to deal with. I am struggling with depression because of the possibility that this may be a permanent condition for her.The feeling of not being able to help is terrible. She was the primary bread winner and she lost her job back in Feburary but had not worked since the accident. The financial strain is tough. We take it one day at a time and look for the bright spots and when I get to feeling stressed about money I focus back on her situation and look for positives.
She has another condition from the accident called cervical dystonia that requires Botox injections to her shoulders and neck every 3 months for the rest of her life. The injections wear off 2-3 weeks before the next injection and it takes another 2-3 weeks for it to take effect so we have like a month and a half of increased headaches, fatigue, sensitivity and general pain several times a year. We are in that phase right now which is why I joined this site.
I to get frustrated because of what I lost and at times I have to really beat myself up with guilt to get focused back on what I can do for her. I don't think there is anything wrong with feeling this way but you are right, it can increase their symptoms so we need to keep it from getting to them. Hang in there!
I wish you and your family a quick and full recovery.
Tim

I don't know if you have seen other post mentioning upper cervical chiropractic care?

With any hit to the head or shoulders/upper body { those can also affect the 2 top cervical vertebra because of the weight of the head}
- MDs usually don't suggest chiropractic or even upper cervical care - must be a stigma or something...:(

But it just might be helpful, if you read about it it makes sense.
this site is a good starting place to learn about it - it is different from regular chiropractic adjustments if you are concerned about that part of it.

http://www.upcspine.com/

signs/symptoms - http://www.upcspine.com/self.htm

You may also read on our Thoracic outlet syndrome {TOS} forum if arms/hands, neck & upper back are having pain.

Spouses,

You both would benefit from downloading the TBI Survival Guide at http://www.drakecenter.com/file.axd?...vivalGuide.pdf

Print it out so you can pass it around to friends and family. The "ah ha" moments will be frequent.

It is oriented for severe TBI but is great for PCS.

Both of your wives can go on with their lives with a bit of help and understanding. The first need is to understand their symptoms. Then you need to learn to separate each symptoms so you can address them individually. Trying to use a shotgun approach with PCS is overwhelming.

Post up the specific symptoms that are the most frustrating and I am sure someone will have some help with them. We use work-arounds and accommodations to get past our ongoing symptoms.

My best to you two.

Tim....Thank you for telling your story and Thanks for reminding me to take it one day at time. I'm impatient b/c I don't have control of it. I'm glad I found this forum b/c sometimes it feels like we are alone. My wife is slowly improving and I just hope it continues. I think working the week after it happened and trying to return work 4 weeks later magnified her symptoms. She is still fatigued and mentally overwhelemed easily. At his moment she is taking a nap.

It has been frustrating because it has been a nice summer outside. Seeing all the families in the neighborhood enjoy it has been difficult. Having two young children and not knowing when it will end has proved to be even more difficult. I'm a teacher so I had the summer off to be home. I'm going back in two weeks and I'm hoping she is well enough to watch a two-yr old.

As you reminded me we just need to take it one day at a time.

Good luck with your situation. Best wishes

Mark ~ thanks for the information. I'll take a look at it.

Tim,

I forgot to finish my prior post. Has your wife sought help from any Physical Therapists? Not just any PT but a PT with highly developed skills with myo-facial release. I had similar dystonias. My gut was paralyzed and in spasm. My neck and shoulder muscles were stuck.

My PT just looked at me and could see my problem before she even touched me. It took six months of therapy to get long term improvement. I got immediate relief but the spasms would return until there was enough non-spasm time for my body to heal.

Medications can complicate Post Concussion. It depends on the medication. Muscle relaxers and other pain and sedation meds can confuse her brain as she tries to get her mental bearings back.

Each concussion symptom needs to be treated separately. There is no shotgun treatment for PCS. I have been living with PCS in varying stages for over 40 years.

Some medications prescribed for PCS can cause postural rigidity. Paxil and other SSRI's can do it with intensity. The neck issues only make it worse.

She sounds like she suffered a whiplash type of concussion. The combination can be brutal. Be nice to her.

I have mentioned before that Post Concussion Syndrome is like an iceberg. Those on the outside only see the 10% of the symptoms visible above the surface. The concussion sufferer also experiences the 90% below the surface.

You frustrations are nothing compared to her internal frustrations. Be nice even when you don't feel like it.

The Survival Guide is a must read for you both.

Tim, Has your wife applied for Social Security Disability? She needs to right away. It takes quite some time to get approved but the back pay is limited to twelve months before the date of application. She has already lost 10 months of back pay. If she gets better and returns to work, they will discontinue the SSDI. Until then, get the application process started.

My best to you both.

I will not be watching this board for a few days. My mother is hospitalized and I need to be away from my computer.

pcs fo life
 

--------------------------------------------------------------------------------

Been a year since injury and I am still not functional...I sleep 12 hrs a night and wake up exhausted, always spaced out and just not with it, headaches, noise/light, balance, and I don't think it will ever go away. I feel like I am on another planet. I feel brain injured for life...

seeing some good brain injury docs this week, but I am very sad as I think they will just give me advice on how to cope with the person I have become and the person I have lost...maybe prescribe antidepressant...I cant work or exercise and am goin crazy because of all that I am dealing with...this is torture...I dont think humans were made to tolerate this kind of injury emotionally or physically...it is too much too handle

after goin thru all of this who wouldn't have depression or thoughts of suicide?...

I met another guy who had a similar injury (brain trauma) and he is still not functional 3.5 years later....first months after my bad concussion I was trying to stay positive, but when you dont get better what the heck are you supposed to do???

Andy55,

As Tim stated in his reply we all need to take it one day at a time and be thankful for what we still do have.

Mike

andy55, I agree...it can be very depressing and even thoughts of suicide...but SpouseofPCS said it great above.

I've had great difficulty sometimes dealing with my PCS and always come back to this board for reassurance that indeed I am not crazy! Someone once told me many years ago that there is always someone better off and there is always someone worse off than you are. It has stuck with me and I repeat it when times are tough. It does remind me to appreciate the whatever is good in my life. Many have been helpful here where no one else has...that is one good thing right there!

Hang in there with us, we're here to support one another!