What have I missed with my PCS recovery?
 

Hi All,

I am new to this forum. I skimmed through Neuro Talk a few times earlier in my PCS recovery, but often left scared and anxious, overloaded by stories of brain injuries that have severely affected so many vibrant people. I can handle these realities better now.

I am a 42 yr old husband, father of 3 children(3yrs, 7yrs & 9 yrs), friend of many and family member to a special few. My life has been drastically altered by a Sydney Crosby-like concussion (blindside blow to the left temple playing helmetless shinny - outdoor hockey with buddies) that happened 13 months ago. I am not back at work yet at my job as a high school teacher and coach.

My symptoms over the past year have included:
fogginess, dizziness, brain fatigue, photo sensitivity, audio sensitivity, ringing in the ears, head pressure, neck and shoulder stiffness, anxiety, depression, foul mood.

The first few months of my recovery were devoted to rest and a long battle with anxiety and low mood. I needed sleeping medication and could not nap for 8 months. Now I am calm enough to do so (thanks to medication and perhaps learning to take it easy - not easy for a energizer bunny like myself) and have a 2 hr nap every day.

Here are the actions I have taken to improve recovery:
* Consulted with a supportive GP often (continue today)
* Consulted with a "Concussion Specialist" / Sports Medicine Dr. - mainly tracked my condition and told me to calm down (discontinued)
* Went to Restorative Yoga 2 times per week (continue today)
* Psychologist that uses EMDR (continue today)
* Massage 1-2 times per week - back and neck (discontinued after many months - felt good, but didn't improve symptoms)
* Went to MyoWorx for 2 weeks in Guelph Ontario - cervical and back muscle stimulation, massage and daily stretching routine (discontinued after 3 months, but still do some stretches)
* Went to U of Buffalo to Concussion Clinic - treadmill test, vestibular testing, vestibular physio & workout program (discontinued after a few months, but still do as much exercise as brain allows)
* Vestibular Physio - not much help (discontinued, but might try again)
* Cervical Chiropractic (studied with Sidney Crosby's guy in Atlanta)- focusing on C1 and C2 vertebrae (discontinued due to lack of progress)
* Cranial Sacral (discontinued -no improvement but felt good)
* Brain Balancing by Brain State Technologies at Valentus Clinic in Victoria BC for 10 sessions - 1 week (interesting, but no major improvements)

New Actions:
MD/Naturopath/holistic healer - just beginning treatment
Chiropractic Neurologist who studied with Sidney Crosby's Dr. Ted Carrick - just beginning consultations

As you can see, looking for a treatment that will help me reduce my symptoms and make me more resiliant to setbacks has taken a lot of my time. Not to mention, slimmed my wallet.

I am resting well these days, but am in the middle of a major symptom flare up due to a big day at the nordic ski club with the kids 6 days ago(light skiing, dehydration, shoveling, playing active games).

Is there anything I have missed, or should try again in my PCS recovery? Any advice from the wise veterans on this forum would be welcome. :)

Anyone in the Ottawa, Ontario area who wants to talk and compare notes about local treatments?

Hows your diet? Are you avoiding proccessed foods? Do you drink alcohol, use sugar substitutes, caffiene or other neurotoxins? Has any of your doctors tried prescribing SSRI's? What about myofascial release? So far it appears you are seriously dedicated to get better but your efforts may be better if you can sort out your symptoms into there various triggers.

I know for me mental stress will result in tension in my back and neck. This results in back pain and some really nasty headaches. I also know that stressing over the emotional component of my injury clouds my judgement. So I leave the seriuos decision's to the respective proffesionals.

Back pain is the domain of my therapists and GP. Emotional advice is the therapists domain. Legal issues are the lawyers domain. By working very hard to surrond myself with top level proffesionals reduces both stress and effort on my part. I trust these people and follow their advice. No one can predict how long your recovery maybe. If you find that after a couple years you are still not progressing then you may want to start considering quality of life issues.

For myself a neuro-psych assesment went a long way to answering most of my questions. I have found this injury has been both a challenge. A deep and diffcult test of my physical, mental, intellectual and spiritual self.

TommyB,

It sounds like you have been very busy DOING. have you tried simple quiet rest ?

Many of the therapies you mention are limited to specific injury profiles. The continuing EMDR may be over-stressing your visual processing. It is not designed for PCS. It is more for anxiety and psychiatric conditions, PTSD, etc. I would not submit to it myself. I have a history of seizures.

What is the longest period of moderated activity without therapy that you have gone ?

There are no proven treatments for PCS. it sounds like you have tried all the treatments designed to treat the co-morbid injuries. Has anybody told you to ice your upper neck ? Treatment without icing to reduce inflammation can be futile. When I have a flare up, icing my neck usually helps. The atlas/c-1 to occiput joint is very prone to inflammation. It needs to be treated with care.

Has anybody observed your breathing when you sleep ? atlas-occiput inflammation can effect breathing and heart rate/BP. Do you do anything to maintain straight neck position when sleeping ?

Most of the treatments for PCS are self-treatment. Maybe you need to focus on self-treatment/disciplines.

My best to you.

It all sounds awful, and I completely understand. Similar situation....not able to teach yet but things slowly improving!
I think you may have missed vision assessment. Not just regular eye check up where they do each eye separately, but someone specialised who can assess how the brain processes vision. A neuro-opthamologist (the wait time in my Canadian city was over a year so I drove to Minneapolis) or a behavioural optometrist. There are some in the Ottawa area if the wait time for neuro-opth is too long.

Here is a link with a directory that may get you started:
http://www.covd.org/

I cannot emphasize enough how important the discovery of my visual deficits was to my slow recovery. getting prisms in my glasses at the one year mark has changed my life....I was able to use a computer for the first time in a year!!! I am now back to writing...slowly and not very well, perhaps, and many of the other symptoms are less intense.

Up to 50% of the brain activity relates to visionprocessing, so if the vision is screwed up, you will have no ability to function in other areas.

hope this helps! Let me know if you have any questions.
Hang in there. It slowly gets better, even though it is hard to believe.
(cross country skied for a few minutes last week....no hills, training grid, flat as a pancake, but I saw diamonds in the snow!)

I'm in Ottawa and have been going to the rehab center at the Ottawa Hospital, there's a brain injury clinic there... been seeing Dr. Shawn Marshall, physiatrist. If you google his name, you'll see it on lots of papers.

Don't have a lot of local suggestion for you otherwise, but you can feel free to pm me if you want.

Starr

Good Info Mark
 

Cheers Mark ; )

Thanks for the tip Starr. I need one wise expert to co-ordinate my physical recovery. Perhaps Dr. MArshall at Ottawa Hospital could be the guy for me. Cheers.
TommyB ; )

Much Thanks Mokey
 

I truly believe much of my symptoms are related to vision and vision processing (movement, light, patterns). The vision problems and other symptoms have been pretty good until this week's relapse. The brain seems overloaded again. Thank you for the tips. I get what Mark says about just getting into a routine and resting more. I still have this drive to try to figure out my injury and not miss something that could make a big difference. I am afraid of being like this forever or getting OK only to re-injure myself over and over again with little knocks and bumps like happens to some PCS folks. Cheers Mokey. Hope you can ski more this winter. TommyB ; )

I have found that while I was actively "trying" to get better by researching, going to doctors, going to massage, going to chiropractor, etc. I was not getting better and in fact was getting worse. Since I have stopped "trying" to get better and have just started relaxing and accepting that I will get better, it will just take time, I have been having much better days and noticing more improvements. It hasn't been easy, as we are pretty much all type A personalities here, but it's working.

Your brain wants to heal itself, you just have to let it and stop TRYING! Sounds like your wallet will thank you too!

Good luck!

CC

Thanks CC,

I guess I just want to find out if I have missed anything obvious. I would hate for there to be a relatively simple treatment to fit into my routine that would help me that I didn't know about unless I did some research. I was doing very well with a simpler schedule and lots of rest until this latest setback. I guess my brain/neck (?) is still very fragile and I was surprised by the onslaught of PCS symptoms after a fun day of activity outside. I am a little more emotional too, because my plans are dashed again (recurring theme). I am going on holiday with my family soon and wanted to be in better shape for it. I was also in the process of getting back to work part-time and that won't happen now for a while. We carry on.
TommyB ; )

Tommy,

It sounds like you are too control oriented. You will never be able to control your PCS much less any risk of future impacts. The life of the highly disciplined high achieving person is shredded by PCS. The new discipline is to learn to manage stress, activity level and risk. Life can be wonderful at a slower pace.

As I and others have said, there is no cure-all or fix for PCS. Trying to find one will drive you ragged. It is not like a broken bone or illness. The brain is an entirely unique organ that does not heal/recover like the rest of the body.

There is life without Type A behaviors.

I could say that you can't see the forest (quiet rest) for the trees (the many and various therapies). mTBI is a 'let the forest heal' rather than heal individual trees.

As far as getting back to your previous life, that is a counter-productive effort. Accept your current condition, learn to live within your current condition, and as time goes by, many parts of your old life will sneak up on you. It will be a slow process with a almost imperceptible fade back to your old life. You may have some areas of your old life that never return. That is OK. Your life will still be full.

In the mean time, you will learn life skills that will serve you and your family very well. Life is amazing when it is not driven by six packs of Five Hour Energy or other efforts to stimulate oneself through the day.

As we chase after money and bigger and better things in life, we often miss more important parts of life. Little ones are born with this slower appreciation then we train it out of them. For some of us, our PCS is a lifeline to pull us back to a life more worth living.

My best to you.

Very well said Mark.. So true..

I totally know the feeling-I've asked many doctors that question. It is just so hard to believe this isn't curable. My biggest relief came from seeing a neuro-optomistrist. Someone who is part of the NORA organization. My next biggest relief comes from taking frequent breaks when I am exerting myself mentally and physically. And my third biggest relief is meditation. I'm still looking for the magic bullet.

Thanks CL, I will look into a neuro-optomitrist and I should also get back to my meditation. Tough to find time with 3 little kids!! TommyB

I suffered my concussion from a blindside crosby type hit as well. I've just been trying to get some down time and rest. It seems to have helped me a lot.

My main symptom is dizziness. Someone recommended vestibular rehabilitation to me if you haven't already looked into it. I'm going to try it out this week and see if it helps.

I can't wait to get on the ice! Good luck with your recovery

Just wanted to see how you are doing now? I wanted to get more info on the Buffalo Clinic if you wouldn't mind. Did regulated exercise help? What helped the most out of all the therapies? Thanks

drich,

Tommy has not been on NT for over a year (Feb 24, 2013). Tell us about your symptoms and struggles and we can suggest ways to help with your recovery.

Hey Tommy,

I know what you're going through for it happened to me over a year ago. For me it's the monster headaches that keep me from improving at a quicker pace. My family tells me I have but it's hard not to be impatient when like both of us it's been over a year. I don't think you're missing anything for like they say,no magic bullet for PCS. It's the "ease back into your schedule " line that drives me nuts. Just try and hang in there Tommy is all I can say.

Be sure to get all of your hormone levels tested to make sure they are all within the normal ranges. Concussions can cause hormone deficiencies and accidents can trigger auto-immune diseases like Hashimoto's.

Have you tried any meditation? There's considerable research indicating that people who meditate regularly show improved and more efficient neurological activity during resting states, and my neuropsychologist recommended it as the most important therapy I could perform at home. I do basic mindfulness meditation (concentrating on breathing) and find it helps curb my daytime anxiety.

Meditation helps
 

I have been using meditation for several months now. It is really quite useful. If I am unable to sleep or feel stress I have a cd that I play which really helps.

It took alot of repetition at the beginning but now it is second nature to me.

I sent you a private message in case you would like to contract me. I can give you the names of some of the people I have consulted around ottawa.

Tommy,

Well you have learned to stay away from the ski club for now, just that you were able to do that says a lot. Just take it easy and make sure you listen to your body. When it starts to say your are done, listen to it.

This is the most important thing I have learned and do my very best to do. Sometimes we all have to push just to see how far we can go, just not too far or pay the price.

:)
Be well Laura.....Penguins hometown fan.

I know some people aren't fans of energy medicine but I have to share since this is what has helped me the most. I don't know if you have heard of it but Tapas Acupressure Technique is what it's called.

I have used it a lot in healing from MCS and it has been great so I figured I'd try it for my concussion aswell. There are many psychological aspects of a concussion that can slow down healing and by clearing those you either heal quicker or at least feel a hell of a lot better while healing. :)

Aspects I have found are great to heal are for example; what the doctors have told me, what I have read about concussions, all my beliefs around my ability (or lack thereof) to heal, all my feelings around being injured and having to put my life on pause etc etc.

There are tons of angles to tackle this from. On the website tatlife.com there are manuals and lots of audio/video sessions around different subjects if you need more support. It might be best to see a practitioner at first, I didn't since there are none in Sweden, but it could be great support.

If I start to get brain fog or other symptoms I use the 9-gamut technique to reduce them and it's been really helpful. I read this: http://www.danachivers-eft.com/emofr...ion-relief.htm and I figured why not try it out, so I did and maybe it didn't heal my concussion but it has deminished my symptoms a lot.

Those are my best tips and I'm happy to answer any quetions if you have any! :)

lunalu,

What is MCS ?

Multiple chemical sensitivity :)

<New Actions:
MD/Naturopath/holistic healer - just beginning treatment
Chiropractic Neurologist who studied with Sidney Crosby's Dr. Ted Carrick - just beginning consultations>

TommyB, Have you seen any improvements with Chiropractic Neurologist who studied with Sidney Crosby's Dr. Ted Carrick?
I might try it if it helps.

pinka, Tommy has not been on NT since February of 2013.