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-   -   Educating others on PCS (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/28170-educating-pcs.html)

Nancy F 10-14-2007 05:04 AM

Lucy and Sissy,
My son is doing very well. He claims he has no symptoms, he is driving a half hour to school each day, running, and taking 5 difficult subjects in school and doing well. We have a neurology appt this Monday to discuss his desire to wrestle again. I am giong to tell him that he just cannot do it and he cannot continue to flirt with this possibility. One more shake up and I think his ability to heal to a no symptom level may be impossible. Thankyou for asking. I have learned alot from all of you. as I try to keep him on the correct healing path.
Nancy

Dmom3005 10-14-2007 04:32 PM

Nancy

Good luck with your getting through to him.

Hopefully there will be something else he can do. Is there anyway he can help the wrestling coaches without wanting to wrestle. I personally
figure not. But thought I'd ask.

I am really knowing how hard this is going to be for you and for him to understand.

But hopefully there is another sport or something he can do instead.

I know that in my own case, I'm much older with other issues too. But each
time I've fallen, or caused a small thing, its made it worse. I'm guessing though it started as a child.

I right now am not even able to continue to improve with my balance and other issues. I developed bursitis of the shoulder. But that is life right.

Donna

Lucy 10-14-2007 06:03 PM

HI Nancy - thank goodness no more wrestling - the risk is simply not worth it. Just never forget that concussion is compounding. I have found that the next bump starts off where the other left off. And each time it takes less of a bump to start off again. My GP tells me that those that shoud never bump their head again always appear to - though that is a balance co-ordination thing as well. I know you can't wrap your son in cotton wool, but tell him to be very chosey about what risks he does take with his head! I wanted to put a cool icon on the end of this - I'm not able to attach it!!

gojirasan 10-14-2007 09:21 PM

Quote:

Originally Posted by Nancy F
Stay strong and positive, you may have an injury but the core of your spirit and who you are as a person is still the same. You do not have to mourn your past self. You just may be a little shaken up in the brain but will always be the same soul you were at birth. No injury can take that away from you.

Thank you for your kind words. But you have brought up something, well, the one thing I found most interesting about my head injury. Like many head injury victims I recovered a great deal in the first 3-6 months. But, initially, especially in the first month I was very impaired. I had tremors. I couldn't regulate my heat properly. I would feel like I had a fever and then be shivering with cold soon afterward. I had a lot of trouble sleeping and could only sleep on one side (for a long time actually). And of course I had serious memory and organizational problems and was nearly always in a brain fog. I had difficulty understanding people who spoke fast. Especially on the phone. I couldn't read and really understand very much. I stumbled over my words when I tried to speak. I must have sounded like English was not my native language. But the most interesting thing was that I really felt as if I had lost my 'soul'. That the essential me was just gone. That is truly how it felt. How it seemed.

I have always been interested in philosophical questions and I was sort of fascinated by this. First of all the dog analogy I gave before is pretty apt. That *is* what it feels like. It became crystal clear to me, that the only thing inside of us that represents our 'soul', all that feeling of 'me-ness' is just our brain. That is all it is. Before my injury I suspected that that might be the case, but I was never 100% sure. But I could really feel that that 'me' was just gone. Vanished. I guess it is one of those things that may be impossible to imagine if you haven't experienced it. Again, I think the only way to get close to imagining it is to find some animal like a dog or a cat and observe it and really try to imagine how it might think. So I guess my answer is that our souls exist only as an aspect of our brains. When we damage our brains enough it is possible to lose the essence of who we are. To permanently lose our souls.

I guess I have been somewhat luckier than some in that I did gain back (at least I think) much of my former personality after maybe the first year of recovery. But until that, and especially in the first few months I was a completely different person. Virtually all of my character traits were different for that period. Actually a few things seemed to be an improvement. For instance I lost a lot of my shyness and nervousness around people (social phobia). I guess since I wasn't able to feel most emotions very strongly (anhedonia?), I didn't feel much fear either.

I now regard a head injury as one of the absolute worst things that can happen to a person. Along with psychosis (to a lesser extent), it is about the only way a human being can actually lose their very identity. That is about as close to dying as a non-comatose human can get without actually being dead. Speaking of which if I had not recovered significantly in that first year I would definitely have finished the job by taking my own life. There was absolutely no point in living. I didn't enjoy anything anymore. I couldn't enjoy any of the things that I used to. Not movies or books (which I couldn't understand), not computer games (which no longer seemed fun), not food which I lost interest in. There was nothing that held the slightest interest to me anymore. I mean without my brain, without being able to think there is no point in anything anymore.

Of course there are other conditions that I wouldn't want to have like any sort of chronic pain or not being able to walk or being blind or deaf. Any of those things can be bad enough to make life not worth living. But nothing quite gets to the core like literally losing your own mind.

bigjfa 10-15-2007 03:39 AM

treatment for Post concussion syndrome
 
Hi All

I was diagnosed with PCS 6 months ago. I was given anti depressants and anti vertigo pills helped but nothing else. My neurosurgeon told me to see a cranial osteopath. I have had 10 sessions with her and the dizziness has gone the headaches are not as painful. As head got better neck and shoulder pain got really bad but again they are becoming better.

I am feeling so much better have even come off the pills. I am also about to start back at my job after being off for 8 months. A bit worried about that as i work at heights for some of the job and will see how the vertigo is this time. I hope this helps.

Regards bigjfa

Nancy F 10-16-2007 08:46 PM

I'm glad you are feeling better and hope you can continue to stay well Bigjfa. Gojirasan, what an amazing story and thanks for articulating your thoughts during your very rough recovery phase. I am hoping you find that although much of you is not "up to par" with your former self, that you like something about the changed healing self. I work as a critical care nurse and see alot of patients suffer and each journey is experienced differently. I understand how some patients feel when they become suicidal. I think you are on your way to better living and you seem to be more in touch with all that you are doing and listening and expressing your story to others, strangely is healing. No one can know for sure but I feel that we all have a certain energy that is our soul or core self and that it is specefic to us. Liking that self by my observation is the start of happiness. This is just something that I have felt. You should be very proud of your accomplishments to this point and I hope this pride, that is so well deserved, can bring you some happiness. Stay well.
Nancy

Nancy F 10-16-2007 09:16 PM

Lucy and Dmom,
My son and I had an appointment with his doctor yesterday. It did not go as well as I had hoped. This doctor is a sports medicine physician, neurosurgeon, concussion specialist who sees many, many, PCS victims. He has also written many books, a consultant to national boxing associations etc etc. He sees alot of famous local atheletes who have suffered multiple con cussions. My point in telling you all this is that he still thinks it would be O.K for my son to wrestle again. I know that it is ultimatelty still in our control but i was hoping he would not reccomend it. He said he would not want to keep someone from a passion and it was clear to him that my son was very passionate about returning to wrestling. He said it really was an intermediate sport in risk factors for concussions and that driving a car was also a risk. He was happy that he was not having symptoms and that he thought it would be o.K to go back to wrestle. When I talked to my son on the car ride home, he told me that if he could not wrestle, then he would have nothing in his life to look forward to. I realize that he is 16 almost 17 and immature but his feelings are very strong about this and he becomes very emotional. I am afraid of the reprocussions of forcing him from it. This is now going to be very tricky. I am thinking about letting him work out with the team and seeing how that goes. I pray that this does not end in disaster. You should see how excited he is to start training with the team again. Maybe he will realize how foolish this is in time. The doctor was saying that usually the kids that are injured do not want to go back to the sport. He was quite encouraged that my son has been able to run and work out without symptoms, this is the reason he is not limiting his sport participation. I understand that there is a fine line between protecting and keeping safe and then also living a happy life. I will keep you informed on where this is going.
Nancy

Lucy 10-18-2007 02:31 AM

Nancy, I have not responded straight away about your son, as when I first read your reply I got tears in my eyes. So I thought I should sleep on it. I still don't know what to say really other than we are all different and have different brains - der that is dopey - if we weren't all different the world would be a sad place. Please make sure that he is careful as if this had happened to me when I was a teenager I don't think I would have coped. Best of luck.

Nancy F 10-18-2007 07:12 AM

Lucy,
Thank you for your kind reply. I have read some of your posts and see that you are the classic example of reinjury and you certainly understand by personal experience the cummulative effects of multiple concussions. Did you have a car accident 30 years ago after the head injury in hockey when you where 16? I still think you have some healing potencial, since you keep reinjuriing yourself, even as recently as a few weeks ago. It seems that any small jarring to the head can set you off because of those two significant past injurys that have left you very vulnerable. I am hoping you can have at least a years time of no injury so you can get to feel a little better. It does seem that rest and low anxiety living is the best therapy. You seem to have a great attitude and a sense of humor is so great to have and probably very therapeutic. My son has a good sense of humor too. Keep on plugging at it, I think things may settle down in your head in a bit of time if it's not banged again. Do you have trouble in the back of cars etc. I asked the concussion specialist we recently saw about the dizziness and why it is such a classic symptom. He said they believe it is when the pain is shaken up it damages the vestibular nerve and when this nerve is injured, the patient has all this dizziness. When the nerve heals, it goes away. When a patient gets symptoms back again, it is a sign that they are not healed yet and need to back off. Anyway thanks for staying in touch.
Nancy

Dmom3005 10-18-2007 06:15 PM

Nancy

Maybe the part about the dizziness is one of the things you need to make sure your son really understands. Make this one of the things during practice especially that he has to pay attention to.

Its possible that this part will keep him safe in practice. I would also really
have a good discussion with the coach's and make sure they understand what all this means. So that they can be on alert too.

I can totally understand this for you and also for him. Good luck.

Donna


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