NeuroTalk Support Groups - posts on hope and healing

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- Traumatic Brain Injury and Post Concussion Syndrome (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/)

- - posts on hope and healing (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/78902-posts-hope-healing.html)

Are you in Beijing?

Hi Mike,

I was in Beijing 2 wks ago visiting the Beijing Tiantan PuHua Hospital regarding the use of stem cell for TBI, MS and Parkinson. We you in the hospital at that time?

Dr. Diane Roberts Stoler

Quote:

Originally Posted by mhr4 (Post 523974)

Hi All,

I normally wouldn't divulge something like this on a public thread, but since we visit this to find solutions/success stories, I thought this would be appropriate. My story is the same as all of yours...multiple concussions, pcs, vertigo, sensitive head to bumps, etc., etc.

I have tried a lot of different theraputic techinques and all of them have been beneficial in one area or the other with the exception of making my brain more resilient to light bumps on the head or slight whiplashes, etc.

So, after a lot of extensive research and a lot of consideration, I decided to travel to China to receive stem cell therapy, which is where I currently am. And, by the way, you'll have to excuse me if this post doesn't read well, they have me on prednisone to suppress my immune system. Prednisone, if you aren't aware, is notirious for turning "normal brains" into "fuzzy brains." Anyway, it is too early to tell if anything substantial has happened yet. The docs say it can take between 3-9 months to get the full benefit of the therapy because that is how long it usually takes for the implanted cells to take root and divide. The cells also contain growth factors that naturally induce your own stem cells to begin repairing brain tissue, which also takes about 3-9 months to happen. There have been some improvements, but I want to wait until the 3-9 month mark before I make a final verdict (plus I'm also on other medication the docs here prescribed for me).
So, I just thought that I would let you all know that this is another, albeit extremely expensive and very experimental, option for us in our roads to recovery.

Also, I have learned about a couple of drugs on the market that are used in Europe and Asia very consistently to treat head injuries. Loads of research has been done on them and the results look very promising. The drugs are: Oxiracetum and Cerebrolysin. Just run a simple google search and you'll find tons of info on them. The docs here put me on Oxiracetum for the first 3 weeks and I am currently on Cerebrolysin. The Oxiracetum made a huge improvement, and I'm still waiting to see what the Cerebrolysin does. However, take this with a grain of salt since it's hard to tell what is going on since I'm on the prednisone. Well, thought I would just let you know about the three new treatments I discovered. If anyone has any questions, let me know and I'll somehow get you my email backchannel.

Thanks,

Mike

You missed me by a week. I left on June 20th. Out of curiosity, what did you think if the place?

Mike

Quote:

Originally Posted by Dr. Diane (Post 535737)

Results from 1st mTBI & PCS conference-Vancouver

I attended and was a speaker at the 1st International conference on mTBI and PCS in Vancouver this past week. There was some exciting news for hope of recovery. Key factors are getting restorative sleep, exercise, nutrition and diet, attitude and use of proper diagnosis using some excellent imaging techniques, such as SWI MRI and PET Scans, of course funds for treatment ( healthcare-which has affected all of us) and the use of neurofeedback and biofeedback for recovery along with grieving the loss of your prior self.

I presented my recovery story and how hope and grieving are essential factors of recovery.

Once I get over my jet lag, I will be writing more on my blog on **

As a survivor of a stroke and 3 Traumatic brain injuries, I can attest there is hope. My focus was we might have a disability is some areas, we just need not be handicapped by them. There is a Way.

:winky:

Quote:

Originally Posted by vini (Post 471039)

Please use this thread, to post success story's of your or people you know, or have heard about, that have recovered from TBI PCS to give hope and encouragement, to suffers and there family's

Thank You :hug:

Many of the oldies know me. And I am still around to try and answer questions. But my story hasn't ended to the degree we would hope.

But lots of my TBI and PCS has gone away, but I'm not sure how many
I've had. I really had no clue as a yound adult that I was suffering from
these at sometimes. I can count at least 7 times that I've suffered these
in my years.

Each time the recovery has been longer, and less is back to the same. But
to know that it will get better, is a saving grace. I know that headaches
and whiplash are always connected. But the rest is what ever choses to
come.

Having gone through some vision retraining has helped to lower the amount
I have to look forward too. Thankfully I located this doctor and he not only
took away the migraines but also helped with a reaccuring problem.

There is always hope.

Donna

Neurofeedback Advice

Hi Mike,
I am just about to start a course of neurofeedback for Post concussion symptoms resulting from a car accident that I had two years ago.

Questions:
1. How can you tell if it is really helping? I was told by the therapist that sometime you feel worse in order to get better and other times you feel better. This sounds like covering your bases.
2. How long did it take for you to start feeling better? In other words: How long can I expect to wait before seeing results?
3. What sort of neurotherapy did you have? I am going to start with LENS but there are other typse available. What are the pros and cons? What worked for you?

That's about it. I'm sure there are other people out there considering neurotherapy, so I think that your answers might be of general interest.

Thanks.

Quote:

Originally Posted by mhr4 (Post 491521)

Hi everyone,

I ran across this thread and thought I should throw in my two cents. If you, or anyone you know, has incurred a head injury and you/he/she is not recovering, I would encourage you to look into neurofeedback. You can just google it and find all kinds of information about it. If you live in a big city, you will probably have dozens of therapists in your town who specialize in this. If not, you can also do it remotely with specialists such as Dr. Victoria Ibric or Dr. Diane Roberts Stoler. My quick story is that I incurred 6 concussions while playing rugby in college. I have been doing neurofeedback for a couple of years to relieve symptoms and I have made great gains thus far. If you have any specific questions, just let me know.
Cheers,

Mike

13 yr OLD BOY MUCH BETTER AFTER 11 WEEKS

I wanted to post this to offer support to all those who are going through what my son dealt with this Fall. After accidentally hitting his head on the ground during football practice, my 13 yr old did n;t tell anyone for 24 hours until his headache was so bad he couldnt read or tolerate light. He was diagnosed with a concussion and told it would clear up in 1 -2 weeks. Well after two he was still home from school and still unable to read or tolerate light or noise. It was terrifying and isolating. We lived like ferrets underground with the lights off and I would read to him by flashlight.
Slowly the headaches diminshed, they would re appear if he read or watched too much tv. No computers. Car sickness. No school work. After six weeks he still had lingering symptoms, though improved. It took a total of 11 weeks for his symptoms to disappear. We still have anxiety they will pop up, but he can finally run and jump and seems to be clear.

Find a good doctor, one who can administer the IMPACT test, an orthopedist, not necessarily a neurologist, who may not ahve experience with athletes.

Make sure to be evaluated for vestibular damage as well.

My son didn't like the elavil, it worked on the headaches, but it made him feel sad and out of it, so we dropped it. But it works for many.

Be patient.

newt,

What value did you find in the ImPACT test? Did the doctor use it to determine a treatment regimen?

Has your son has any imaging done?

Has he returned to play?

Donny Winn website

Donny himself is interesting, atleast to me because I see some correlation in my experience. There are also a lot of good links to helpful info. Thought it might help someone. There are also people who post there with PCS.

www.donnywinn.com/

1st mTBI & PCS conference

I'm just glad that there was a 1st mTBI & PCS conference.
But then I thought, "The First! There has never been a conference on this subject before!"
Seems incredible, seeing so many people are affected.
About time.
CS

Quote:

Originally Posted by Dr. Diane (Post 553801)

Quote:

Originally Posted by Oakland (Post 524750)

After "lurking" on the board - and seeing all the negative information - I felt compelled to post. After a slip and fall at the airport 3 years ago, I struggled with horrible post-concussion syndrome for 13 months. After which - I made a FULL recovery. Six months ago, I banged my head on a radiator (freak accident) which again caused post-concussion syndrome. During both episodes, I visited the best doctors NYC has to offer to no avail. Time was the great healer - and I am again fully recovered. Folks who "get better" go off this board- but most do get better! I am happy, healthy, extremely high functioning married 36 year old woman with an MBA - and I got better - twice! There are obviously circumstances contrary to this, but to all newbies - you will recover.

Thanks for posting your positive outcome. Im wondering what type of symptoms you had and how severe your pcs was. I have it as well and it is not fun to say the least. Glad you had such a positive outcome. Hope mine is as well.