There are a few key take aways from my experience that you should keep in mind. Here they are:
- Most doctors' information on concussions is dated, unless they've gone through a significant training program with the right people within the last few years. Their advice is probably fine if you are part of the 9 in 10 people for whom symptoms clear within a few weeks.
- But if you have Post Concussion Syndrome, then you really need a team of experts who is up on the latest rehab techniques. (If it's not a team, then it's not a real concussion clinic and you should be wary. It's a multidimensional injury and it needs a multidisciplinary approach to treatment.) This means you need to get yourself to a concussion clinic with a record of success. I went to the UPMC Sports Concussion Program and they worked wonders for me. There may be some other clinics closer to you and they may work out just fine. But if they can't get you better in a reasonable amount of time, keep looking for the right concussion clinic until you find the one with the right answers.
- In my experience, optometrists and ophthalmologists didn't have much of a clue about how to treat vision problems associated with a concussion, though every one of them provided me with an "answer" that was wrong. So as before, the key is to find an eye doctor that specializes in this area. Dr. Singman at Johns Hopkins is who I found.
- If you are calling around to sports concussion clinics and they say they won't accept you because you were in a car accident, tell them you can private pay and see what it will cost. You can still recoup some of this money if there is a lawsuit and it might be cheaper than flying to a concussion clinic. On the other hand, if a top concussion clinic will take your health insurance, it's probably worth making the trip. HMO's and policies like them usually won't be accepted out of state or even out of city, but for a family plan you can usually switch to a PPO for an extra $300 a month, which is way cheaper than paying out of pocket.
- Remember that there are three sides to PCS. One is the pain and trauma that you have to deal with initially. At the beginning, chronic fatigue was a problem for me, but what really concerned me was that I could hardly use my eyes and I had a constant raging headache. Those issues had to be addressed first and were solved for me with the help of Dr. Singman at Johns Hopkins. And they were not brain-related. They had to do with my eyes and my occipital nerves.
- The other physical aspect has more to do with the brain injury itself. Be sure that is treated as well and not discounted. For some people "the symptoms will just go away on their own." But that's not true for everyone and either way, the speed at which you heal depends a lot on what you do (see neuroplasticity below). There are specific physical, vesitbular (balance), vision, and other therapies that you can do to speed up your healing. So make sure whoever is treating you is properly testing for those and assigning proven therapies.
- The last aspect is psychological, because losing your ability to think and go about your daily life is a huge psychological burden. I felt like I was essentially mentally disabled and feared that I would be like that for the rest of my life. A neuropsychologist is usually in the mix of experts you will see at a concussion clinic and they are great at helping you keep focused and energized and moving forward. Just be careful that your neuropsychologist doesn't think "it's all in your head," so to speak. It probably isn't just a psychological problem. It's physical too.
- Getting better relies on "neuroplasticity," which is the brain's ability to "reprogram itself" and adjust to injuries. This is similar to stroke recovery and the key is systematically and repeatedly exposing yourself to stimuli. For example, if large crowded places make you feel bad, you'll need to do a process of "exposure and recovery." For example, go to a mall and walk around for 20 or 30 minutes. Then go to your car and recover for a bit, before heading back into the mall. This is the strategy recommended to me at UPMC- "expose and recover." The same strategies were used to correct my balance problems, which I didn't even notice were there.
- My recovery took about 13 months. Looking back, I think that if after I had gotten back from Johns Hopkins I had gone to a real concussion clinic, I may have been able to get better in something more like six months. So my final recommendation is to get thee to a concussion clinic! It's the first step in getting your life back!
Thank you so much for sharing your experience. Your journal provides a comprehensive starting blueprint on how to go about recovering from post concussion syndrome and is very helpful. It is sure to save a people alot of time and anxiety in figuring out where to start and what to do. Much appreciated!
ReplyDeleteThank you Sharon! If there was a like button, I'd like this comment. 😀
ReplyDeleteThank you dozSooo much for your story. It sounDs all too familiar and thanks for the exercise BPm advice
DeleteThank you so much for the first hand account of your recovery process. I can tell you have done so much research and I really appreciate you sharing this. I am currently going through PCS and it is the pits. This site really gives me a better direction and course for a hopeful recovery. Thank you so much for taking the time to put this site together.
ReplyDeleteVery happy to share my information. I had very little when I was going through it. Best of luck with your recovery!
DeleteThank you for sharing your story. I'd like to ask some questions. I have PCS too (3months), but I'm from Hungary, and there aren't any concussion clinics in our country. Could you maybe write some tips, what I should do if I don't have the opportunity to go to a clinic? My main symptoms are vision problem, fatigue, tinnitus, headaches, major insomnia, anxiety, depression, thinking/concentration problems, difficulty remembering things, sensitivity to bright lights and noises. I'm a medical student and some of my symptoms only appeared 2 months after my injury (tinnitus, insomnia, sensitivity to noises). I read so few success stories on the internet, and I'm getting more desperate every day. My semester just ended(it was a hell of a time pushing through my exams). And I'm hoping to recover in the summer. Do you think I should exercise (cycling, sightseeing), or should just stay in and try to relax as much as I can. I'm looking forward to your reply. Thank you very much again, Ben
ReplyDeleteHi Ben,
DeleteIt's hard to give general tips besides what I have because it really depends on the symptoms and what's really needed is a doctor who knows how to do an evaluation and based on that, give the right treatments. Plus, for me at least, I had several different problems at once so it was hard to isolate them and prescribe the right treatment for each.
That being said and with an emphasis that I am not a doctor and this is not medical advice, I'd say to look back at the main article, see if you have any similar symptoms, and then do what I did as best you can and see if that helps. The brock string can help a lot if you have convergence insufficiency. The buffalo protocol can help if you have PCS symptoms (especially the feeling of a rubber band around your head) when your heart rate is high.
Sensitivities to noise could be treated with an expose and recover process (expose yourself to that stimuli for say 15-30 minutes, rest, and repeat when you can. Over time, you should get used to loud noises again).
The other thing to do is to keep searching for some local doctor with experience with PCS who can help you with the other symptoms.
I hope this helps,
Martin
Thanks for the information. I'm suffering from PCS and have the vision and cognitive deficits. What did the concussion clinic recommend doing to improve cognition?
ReplyDeleteThanks, Michelle
Hi Chelle,
DeleteI talk about that more on the main page (http://postconcussionsyndromerecovery.blogspot.com/p/my-post-concussion-syndrome-story.html).
For me, a slow / foggy mind was more prevalent at the beginning. Some of that just needs time to heal. But then it lingered and would not go away. There was all of this mental fatigue. What helped was first fixing the pain issues, then doing the buffalo protocol and finally getting my vestibular / balance issue fixed.
Hope this helps!
Martin
I am a month into my PCS and reading this article was so much help and sheds a positive light on my recovery process. I live in Maryland and am going to look into both facilities that you recommended. Thank you.
ReplyDeleteGreg, thanks for the positive review! My best wishes on your recovery!
DeleteI just found this blog - I will go through the posts as I am suffering from post concussion syndrome - traumatic brain injury after being attacked by some bad guys with baseball bats. It is over 19 months and I still have all of the symptoms that started the day after the attack with the exception that the very bad vertigo I had is not as bad however I still have a problem with dizziness. I have been unable to get proper medical treatment as the horrible Obama Care has prohibited this. I have started a web site blog to help people understand what post concussion syndrome - traumatic brain injury is. https://concussionsyndrome.blogspot.com
ReplyDeletehello, I just read your story. I am six months into PCS and my issues I believe are vision and loud noises.. I am back to most athletics and that usually makes me feel better. I have had trouble getting a handle on things other then trying proper rest, work breaks and using glasses and ear plugs for troubling situations. When I do have symptoms and get away from the trouble I usually feel better fairly quickly. I have seen many experts and have had cat scan, physio test, eye tests, hearing tests, osteopath. I have been prescribed glasses with a progression lense, a 20 % rose tint and blue light filter so I wear them most of the time. Do you think this will help? I wear my ear plugs when noise is bad as well. I have been advised to go about my day and push myself, use the glasses and plugs and things will get better at some point. Do you or anyone have any comments on my situation or remedy plan? Thanks
ReplyDelete