Long term post concussion syndrome

[AnnaKarena92]

I was in car accident in February of 2020. I did not hit my head, but ended up with a “yank” concussion injury to my brain stem. Basically, as it was described to me, my spinal cord pulled on my brain stem. Instead of healing in 2 weeks like it should have, I’m rapidly closing in on 2 years and I have been told that my remaining issues are permanent. I have done a 18 months of proprioception, cognitive, and occupational therapy. I have made a lot of improvements. I am no longer listed as having a “severe” impairment (I was in the 0.5 to 1st percentile for most cognitive/memory tests after 10 months) and I got cleared to drive in August and I work full time. I still have a type of amnesia where memories don’t form properly day to day and I am really forgetful for little things, some balance problems, and coordination issues especially as it relates to using my right arm while walking or doing anything with my left hand.

For the rest of me, my back and neck will never be the same, but I manage.

I have ridden since I was 3 years old, but I haven’t been on a horse since the accident. I REALLY want to get back to it. I know I’ll have to make some pretty serious adjustments from my previous style, etc. But, I’m also really scared of coming off. The doctors don’t think it’s a problem as long as I wear a helmet and I’m careful. I get nauseous and a headache if I sit down too hard, am I nuts for thinking I can get a super calm horse and start riding? Or should I just give up, enjoy the memories and find something else to do with my life?

Any thoughts, opinions, experiences, etc are welcome!

[cutter99]

Whatever you do, get yourself an MIPS helmet. Try them on, find one that fits well, and use it. It can help to prevent any further trauma to your brain.

I suffered a concussion and brain bleed in 2020, coming off a horse. I also fractured my sternum in 2 places, and got a helicopter ride to the nearest trauma center.

My discharge instructions were to wait from 3-6 months to return to riding. I waited close to 6 months, due to dizzy spells, as well as weather.

My biggest hurdle was how to handle getting back on as my injuries were riding related. I also ride alone, with the exception of a few weeks a year when I camp and ride with friends.

The offending horse had been moved on shortly after the wreck, actually as soon as I was steady enough to load him on a trailer, as it was determined he did me dirty with the intention to hurt me. I got out my oldest, steadiest horse and rode him for about 5 consecutive days. Then I got on my next most experienced horse, and kept going.

I did tell myself if at anytime I was scared or uncomfortable, I would stop, seek out an instructor or trainer, and go from there. I also got on every time with the intention to not be a passenger but to effectively ride. I do not usually ride in a ring or controlled area, but it is something that would help tremendously in making a comeback.

Another resource that was recommended in another thread here was Dale Earnhardt Jr.’s book about his
multiple concussions and the treatment he received at the University of Pittsburgh Medical Center.

Take it slow, use a safe, sane horse, a great instructor who can push you when you need to be pushed, and remember to be kind to yourself!

ETA: I still experience memory issues, and have an issue with finding the right words at times. I find I go through times that are worse than others. One thing I have done, which I am not sure is good or bad, is participate in a brain trauma study with a major teaching hospital. It has to do with memory and how my brain now processes things. I know that the study will help others in the future, but sometimes it scares me as I can see what or how quickly I forget things.

[AnnaKarena92]

Thanks for the info on the MIPS helmets, they look really interesting and I’d never heard of them!

I’m thinking about those inflatable safety vests as well.

[SuzieQNutter]

Use the MIPs helmet.

What type of memory loss?

Will you remember an injury the horse had the day before or things like that. Maybe start writing things down about the horse like medications etc so they don’t get forgotten.

[AnnaKarena92]

Yes, I’d remember an injury, but the details of how it happened and if/how it was treated may or may not stick. But, I’d have to set a reminder for where I left the medication and when/how much to give. Now, I do things like forget that I fed our dogs, forget where I’m going, can’t remember where I put things. I can’t remember numbers or instructions that are more than 3 steps. It’s not hazy, it’s just gone. It took me 16 months to learn a new password that I use probably 20 times a day. Stuff like paying bills, etc. I have to keep very close track because I forget. Most is on auto pay now, but I randomly forget and panic that I didn’t pay something. I forget things 10 minutes after they happen, but randomly recall them a week later like it just happened. It’s listed as “Amnesia-Other”

[SuzieQNutter]

As long as you don’t do something like trying to mount without tightening the girth.

[AnnaKarena92]

That is entirely possible, but my husband will be there to make sure I don’t (my days of riding alone are done, I know)!

[SuzieQNutter]

That sounds wise and what I was going to suggest.

[Willesdon]

Head injuries are very personal: each one affects each person in varied and often really subtle ways. However, one common thing seems to be a need to take time, often plenty of time, to recover. Rest, pace yourself, don’t push it, rest.

Obviously you are progressing really well if you are working and can now drive. How tiring was it when you started back driving? Now remove the horse from the equation. Ask yourself are you ready for e.g. dancing at a wedding? Could you hike over rough terrain for half a day? Could you manage a day shopping in the sales, with a nice lunch with a friend in the middle? If the mere thought of any of these make you feel nauseous, brings on the headaches, sends your vision weird then you are still not ready to ride. Then think: could you cope if the horse made a sudden grab for some grass or accidently knocked you with it’s head? And you say you still can’t sit down too hard without giving yourself a headache. Listen to your body: it is clearly telling you something.

One of the longer-lasting - and possibly most dangerous - symptom of head injuries is poor decision making. They seem good at the time but turn out to be really foolish because some subtle cognative functions are still missing. ‘I’m fine! I’m feeling so much better! I’m ready to get going!’ Only to find one is not totally better and that taking more time and so avoiding a crashing halt would have been a far better idea. That is where it is worth asking for the opinion of someone who knows you really, really well and can see when you are still NQR.

I’ve unfortunately had more than one concussion. My last bad one took 6 months to get rid of the headache, largely because I could not afford not to work and so I was using a computer and doing brain work for several hours a day which was exhausting. This certainly delayed healing. However, I finally went to my McTimony chiropractor who did a small manipulation of my skull and the headache switched off immediately, like magic. Since then, I go for treatment after any fall. Maybe check out some alternative treatment to help you, such as a McTimony chiropractor, pilates, some gentle yoga before you try riding again. A bit of body work to straighten up and loosen up. We tend to forget that riding is such a total body and mind workout because we are used to it.

So take your time, go slower to make faster progress. It may be another year or so before you are actually ready but don’t give up hope of riding.

[AnnaKarena92]

Thank you. I think I need to remember there isn’t a set healing time for this.
I do see a chiropractor every week and, tbh, he is reason I am walking almost normal (I still have some gait abnormalities).
It took months of very patient work from him to get me walking without a walker or a cane to drag my self along. In all honesty, I never imagined I would spend months clinging to someone for dear life to avoid falling while I figured out how to get my legs to do what I wanted. I wasn’t paralyzed, I could stand and sort of drag myself with a walker, but anything more wasn’t happening.

Forget dancing at a wedding, just going to one is overwhelming. Going to the store for groceries is a huge task that leaves me completely drained for the rest of the day.

[Willesdon]

It sounds like you are making really fantastic progress and have just the right help in place. It is when you drive to the store, shop and come home and then think ‘oh, not too bad’ that you are perhaps ready for horsing around again. It is probably Tough Horse Person that has got you this far, so soon.

[Jackie_Cochran]

I have MS. I have/had a lot of the same issues, nervous system problems can look alike from the distance.

My MS was there all along (I ALWAYS had balance problems) but after a passed-out drunk drove head first into the front of my car my MS got triggered big time. My once pretty reliable memory disappeared, the only thing I could remember from one day to the next would be in the total disaster category. I ended up with compulsive note-taking at my job since I just could not remember from day to day. Then I read about Ginkgo Biloba, did some further research, went out and got some, and three days later I could remember MINOR stuff from the day before.

My memory is still bad, but at least I do have a working memory now. If you want to try the Ginkgo Biloba check with your doctor, of course.

My balance never got better. Riding horses was what got me going again, from having to use an electric wheelchair or a wheeled walker to being able to go over most types of ground with two canes at a decent rate of speed. I can even walk a short distance without my canes now. When my overused electric wheelchair gave up the ghost I did not have to replace it, and over a decade later I feel no need to replace it.

Though I still had horses back then I was not riding them, it was just too exhausting for me to get the horse groomed, the hooves touched up, get the horse tacked up and then mount, I was so totally exhausted.

I decided to get back into riding I had to find a hunt seat stable nearby me (car trips are exhausting) that would be willing to let me have a 30 minute private lesson on a school horse, with someone else catching, grooming and tacking up the horse. I told my riding teacher that I NEEDED her to be a position Nazi since I do not have a proprioceptive sense, to go along with my horrible balance, bad coordination, and tendency to get completely exhausted after any physical effort.

So for over a decade I have mostly been walking with some slow trotting. I have found that these sainted school horses like carrying me better if I look after their comfort, basic things like BOT saddle pad, BOT poll cap, BOT exercises sheet (their butt blanket) and now in the cold weather a BOT neck rug. That way, in the cold winds of winter, the horses do not feel like they have to run around like crazy just to get warm, they can just huddle under all the “clothes” I put on them. They like my Micklem bridles (I cut off the chin strap), they really like my titanium bits, and they like me riding Forward Seat and giving their head freedom even when we are on light contact (my hands belong to the horse’s mouth.)

My riding teacher uses me. I told her I would ride whichever horse she wanted me to work on. I have ended up on horses with some challenges, mainly from bad or no training, old age, arthritis, and at first I mostly end up telling horses that even though I am a WEAK rider with no balance they still have to obey me, just like they are expected to obey a small kid who is just beginning to ride.

For my balance problems I have found the most help from Rider Grips (RiderGrip.com), rubber disks that self-glue onto the saddle flaps, and silicon full seat breeches. With these giving me a reference point and preventing me from sliding around in the saddle I can keep in reasonable balance with the horse and not slide around the saddle.

I also use stability stirrup leathers (mine are the leather Millbrook ones), the Tech Venice Slope safety stirrups, the RS-tor riding aid, and a grab strap.

You may need help your first rides. The handicapped riding programs can help you there. One did help me but I needed to ride more (it is my physical therapy) and I got sick and tired of being led around, so I went in search of the hunt seat stable where I ride now with no one leading the horse around.

I can’t do much on horseback, but both the ladies who let me ride at their stables like what I do with their horses and how their horses usually improve for other riders.

[AnnaKarena92]

Interesting on the Ginko, I will check on that for my case. I have taken it before, but “just because” so I didn’t really notice anything.

I am glad you have been able to find a way to keep riding. Fingers crossed that I can do the same, this sucks.

[OverandOnward]

@AnnaKarena92

I get nauseous and a headache if I sit down too hard, am I nuts for thinking I can get a super calm horse and start riding?

As they say, listen to your gut.

Maybe give it another year and then see where you stand?

Whatever decision you make, it isn’t necessarily the last decision you will ever make about riding for the rest of your life. You can always change course later. (Probably wouldn’t go into horse ownership, if you aren’t an owner now, until you are riding regularly and all is going well.)

But at the same time you are wise to keep in mind that, unlike your decisions and decision process, another injury might be for the rest of your life. Mitigation both through head-protection and timing is definitely your #1 priority.

You might want to wear a safety vest as well. Many riders (especially in some disciplines) wear the safety vests for almost all of their rides.

Also while not riding, remember volunteering at horse events of any kind. And horse rescue as well, lots of roles don’t involve riding or even handling horses. It’s a chance to learn a lot of stuff and have some new experiences.

Sorry you have had to go through this! All the best for you in your future with horses!

[Halternatively]

First, I’m really sorry to hear that you’re suffering from PCS. While it seems to be better understood over time, it’s a tough condition because it is invisible and not a lot is known about it. Second, I’m going to be straightforward with you and tell you that until you are completely symptom-free, you should not be around horses. Once you’ve had one concussion, your brain re-concusses more easily.

It sucks, I know from first-hand experience. I had a TBI from a fall while jumping in 2015. Between my 2015 TBI and now I’ve had at least 6 concussions from things like falling in my garden ( I have PCS and have balance issues). Being at the barn adds a level of unpredictability and danger that a helmet may not protect you from. I’ve been smacked on the head by one of our horses going for a fly while being groomed, for example.

Heal well and fully. Then you will have many more options. I wish you the best!

[OverandOnward]

Halternatively, hope it is ok to tell you that if your PCS has taken you away from horses, I am so sorry for that. But just from this one post there is no question that you are STILL a horseperson. Through and through.

[Halternatively]

OverandOnward, thank you. Your kind words made me stop and be still. I cannot ride any longer because of my TBI, but you’re right, I am still a horse person at heart and love our horses dearly. Thank you for the reminder.

[phantomhorse]

Is there a therapeutic riding center anywhere near you? While that may not be something you need long term, for the first rides that may be exactly what you need to set yourself up for the best experience and to see exactly how your body rides post accident. They will have lots of help and calm, steady horses. If after a ride or two you find things are going well, then you can look for a regular lesson barn which is able to accommodate any additional needs you may have.

It sounds like you have made amazing advances in your recovery so I have no doubt being back in the saddle is only a matter of time. Please keep us updated!

[cutter99]

Excellent suggestion @phantomhorse!!!

[CHT]

I think the most important element is if you have someone you trust to be aware of your limitations and help you along. A lot of coaches are programmed to push for continuous improvement, but that might not be what you need, but I do think a coach will be helpful as you may not have the awareness you think you do.

I also suggest looking into any barns with gaited horses (thinking gaited morgans or pleasure bred Tennessee walkers and the like). Their way of going might be more enjoyable for you!

Thirdly, have someone drive you, and drive you home, just in case it is more exhausting than you think! I get super tired, super easily after things that are a bit stressful, and that is a symptom of PCS.

Good luck and I hope you find a path that works for you!

(alternatively, consider driving ponies?)