CTE Treatment Discussions

We are not doctors and we can never take the place of doctors. The information below is placed here as a resource for discussing different health options with your medical professional.

Please beware that some af these sites are promoting the sale of their products which we no way endorse. If we link to their site it is for the educational discussion only. Please don’t get hooked into buying any of these products without talking to your doctor first. There may be a cheaper and healthier option. 

Most research we have seen makes the case that inflammation in the brain may speed up CTE and CTE causes inflammation, so it is a cyclical process. If symptoms are severe, your brain may be very inflammed. A healthy diet, exercise, and vitamins may help.

Every brain and injury is different. Good luck on the road to wellness. A lot of researchers are working hard to help you. Hope is on the way. 

How to Control Inflammation with Your Brain:

Brain researchers are seeing a cyclical link between brain inflammation and CTE. Try to reduce the inflammation and maybe curb CTE:

http://www.integrativepsychiatry.net/brain_inflammation.html

Medical Marijuana May Help Manage Chronic Traumatic Encephalopathy Pain, And Even Slow Disease Progression:

http://www.medicaldaily.com/medical-marijuana-nfl-players-chronic-traumatic-encephalopathy-372648#

 

Balancing Neurotransmitters to Take Control of Your Life

The Best Supplements for Your Brain:

http://www.onemedical.com/blog/live-well/supplements-for-your-brain/

Feed Your Head:

http://www.thedoctorwillseeyounow.com/content/nutrition/art3258.html

Blueberries:

Franco Harris, NFL Hall of Fame Steeler, eats two pints of blueberries a day.

http://www.lifeextension.com/magazine/2006/2/report_blueberries/Page-01

Vitamin D

https://www.scientificamerican.com/article/does-d-make-a-difference/

 

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81 Awesome Mental Health Resources When You Can’t Afford a Therapist:

http://greatist.com/grow/resources-when-you-can-not-afford-therapy

Exercise + Sleep = Recovery:

Drs. at the National Summit on Sports Concussions suggested 4 days a week of 120+ heart rate exercises for 20 minutes per day and a regimented sleep improved brain health

Psychedelic Drug May be Approved for PTSD Therapy:

https://www.washingtonpost.com/national/health-science/ecstasy-could-be-breakthrough-therapy-for-soldiers-others-suffering-from-ptsd/2017/08/26/009314ca-842f-11e7-b359-15a3617c767b_story.html?utm_term=.aa756fffdb1a

Therapeutic benefits of a component of coffee in a rat model of Alzheimer’s disease:

http://www.ncbi.nlm.nih.gov/pubmed/25034344

What Makes the Functional Neurological approach different than the standard approach to diagnosing and treating concussion?:

http://askdrchildsdrdurr.com/conditions/concussions

Vestibular Rehabilitation:

http://vestibular.org/understanding-vestibular-disorder/treatment/treatment-detail-page

LI doctors help Jim McMahon get his life back, and they can help others, too:

http://www.newsday.com/sports/football/li-doctors-help-jim-mcmahon-get-his-life-back-and-they-can-help-others-too-1.9493358

Power of Vitamin D :

http://www.lifeextension.com/magazine/2013/10/dr-l-ray-matthews-unleashes-the-power-of-vitamin-d/page-01

Mindfulness :

http://greatergood.berkeley.edu/topic/mindfulness/definition

Testosterone Levels and Brain Health:

http://www.longevity-and-antiaging-secrets.com/testosterone-and-brain-function.html

The following information is from the Bart Foundation:

1. Introduction, Preliminaries and Caveats:

Please read our Disclaimer Page again before using this resource guide.  There are no definitive, uniformly accepted standards for persons claiming to offer alternative therapies.  In some states anyone can hang out a shingle, even without suitable training or credentials, and claim to be a craniosachral worker, neuro-feedback practitioner, nutritionist or other therapist.  To address this critical pitfall we have consulted acknowledged thought leaders in each field, followed their guidance, and presented lists of practitioners that are likely to be well qualified.

Even then there are no guarantees. One should seek a frank discussion with each prospective physician or therapist in order to explore their background.  How long have they been practicing their specialty?  What prior experience do they have in treating patients with brain injuries?  Can they offer references or testimonials?   Nothing is 100 percent effective, not even aspirin or acetaminophen.  With alternative therapies, as with mainstream approaches, there is always an element of chance, luck, randomness.  What works brilliantly for one survivor, may not work for another, and we may never know why.  All one can do is try one’s best, and hope to be lucky.

 

2. How can I locate practitioners in my area?

We are unable to make specific referrals – not only for liability reasons, but also because we don’t personally know most of the practitioners. Please review their information posted and then call prospects to inquire how they might help your personal condition.  Most physicians and therapists will let you know if they feel they can help, or will offer an alternate suggestion.

Craniosachral Therapy (CST)

We are not aware of any comprehensive listing of Craniosachral practitioners in the USA.  What we have been able to find thus far are partial listings, compiled by different organizations, each with an interest in CST.  These are no overarching requirements or certifications for CST practitioners – in many states anyone can claim to be a craniosachral worker, even without suitable training or credentials.  Here are two relatively safe and reliable ways to find a CST practitioner:

  • A physician who practices craniosachral therapy,(usually a Doctor of Osteopathic Medicine, a DO) or
  • Some practitioner with suitable credentials from The Upledger Institute – a Licensed Massage Therapist (LMT), nurse or other health care professional.

Accordingly, here are two lists, one from the Osteopathic Cranial Academy, and the second with candidates who have been credentialed by the Upledger institute, the premier School of CST.

The Osteopathic Cranial Academy: DO’s and Dentists who practice within the cranio field:

To find a physician:  http://cranialacademy.org/find-a-physician/

The American CranioSachral Therapy Association: Endorsed by the Upledger Institute

To find a practitioner:  http://www.iahp.com/pages/search/index.php#result

 

Hyperbaric Oxygen Therapy (HBOT):

We are not aware of any comprehensive listing of HBOT facilities in the USA.  What we have been able to find thus far are partial listings, compiled by several different organizations, each with an interest in hyperbaric medicine.  Note that usually only free-standing independent HBOT clinics are willing to treat brain injuries or other neurological conditions off-label. Hospitals do not generally allow HBOT to be used for such conditions.  Most of the lists are searchable by location, or at least by State.

  • List of HBOT centers compiled by the Program in Integrative Medicine of the University of Colorado College of Medicine:

http://www.healing-arts.org/children/hyperbaricoxygentherapy_hbot.htm#Arizona_HBOT

  • Hyperbaric Link: List of HBOT centers, mostly hospitals, but includes independent free-standing clinics that treat off-label neurological conditions.

http://www.hyperbariclink.com/treatment-centers/treatment-centers.aspx

  • treatnow.org: centers treating wounded warriors, veterans and others:

http://treatnow.org/treatments/treatment-centers/

  • International Hyperbaric Medical Foundation:

http://www.hyperbaricmedicalfoundation.org/hbot-treatment-sites

  • International Hyperbarics Association, Inc.:

http://www.ihausa.org/members/iha-contact.html

  • Undersea and Hyperbaric Medical Society:

https://www.bestpub.com/periodicals-and-subscriptions/find-a-hyperbaric-chamber.html

Neurofeedback

We are not aware of any comprehensive listing of neurofeedback (NF) practitioners in the USA.  What we have been able to find thus far are partial listings, compiled by different organizations, each with an interest in neurofeedback.  There are no overarching requirements or certifications for practitioners – in many states anyone can claim to be a NF worker, whether or not one has suitable training and credentials.  Safest to do one’s own due diligence, including inquiring what experience, if any, the therapist has with brain injuries.

For Traditional neurofedback, there are a couple of good sources:

The EEG Education and Research:

http://www.esiaffiliatesforum.com/providers/us

The Biofeedback Certification Institute of America    http://certify.bcia.org/4dcgi/resctr/search.html

For LENS neurofeedback, the safest source is Ochs labs:

http://www.ochslabs.com/providers.php?country=United+States&search=country

Omega-3 Fish Oils

These are widely available, but not of uniform quality. Dr. Michael Lewis, thought leader in this area of research, recommends only using fish oils that have been double distilled, and preferably reconstituted in their original triglyceride form. Here is a link to his site: http://www.brainhealtheducation.org/omega-3-protocol/

LED Light Therapy

The use of transcranial LED therapy, sometimes called Photobiomodulation, is an emerging approach to brain healing.  Like HBOT, there are already some FDA approved applications, but these do not include ABI.  There is a wide array of organization representing practitioners but we are not aware of any easy way to access lists of practitioners.  We have some useful resources to share at this time, with hopefully more to come soon.  There are dozens of organizations devoted to study of light therapies worldwide including the North American Association of Laser Therapy, the International Academy of Laser Medicine and Surgery, and the American Society for Laser Medicine and Surgery.  Some of the notable journals covering this field include:  Photomedicine and Laser SurgeryLasers in Surgery and Medicine, and Lasers in Medical Science and Physiotherapy Practice and Research.

Some specific practitioners who have been vetted by one of the thought leaders in this field include:

Two highly experienced, licensed Acupuncturists who use transcranial LED therapies to help treat ABI (PTSD, stroke, dementia, etc.).

 

Diane Iuliano, L.Ac., M.Ac., Dipl. Ac. (NCCAOM)

777 Concord Avenue, Suite 301

Cambridge, MA 02138

617-489-6189

email: dmizac@aol.com

website: acupuncturetherapy.us

 

Marcy White, L.Ac., M.Ac., Dipl. Ac. (NCCAOM)

Copley Acupuncture

667 Boylston Street

Floor 4

Boston, MA 02114

617-281-0797

copleyacupuncture@gmail.com

 

There is an RN light researcher in Toronto, Canada, who works remotely with patients throughout North America (Via Skype, or video conferencing).  She will sell or rent suitable equipment, teach protocols for its proper use, and further support applications.

 

Anita Saltmarche RN, BScN, MHSc

Saltmarche Health & Associates Inc.

416 579 5773

anita@saltmarchehealth.com

 

Two Canadian firms produce photobiomodulation devices which they claim help ABI survivors regain cognitive functions. These devices are approved and in use in Canada.  Our Foundation does not endorse or recommend any particular companies or products.  Nonetheless, thought leaders in the field have been known to use devices made by these firms in their scientific studies.

 

VieLight  –  http://vielight.com/

Medex Phototherapy – http://www.medxhealth.com/MedX-phototherapy/overview.aspx

3. Cognitive Rehabilitation:

Cognitive rehabilitation: (These health professionals, generally neuro-psychologists or clinical psychologists, map the injury and devise individualized strategies to remediate/overcome functional deficits):

Center for Neuro Skills – Several locations in CA, and one in Dallas, TX
Kessler Institute – Saddle Brook, NJ
Mount Sinai Hospital Neuropsychology Dept. – NYC
Neuro Psychologic Rehab Services – Albany, NY
Rusk Institute of Rehab Medicine- NYC

4. Physicians and Therapists:


The following physicians and therapists advocate and practice alternative therapies, including HBOT, neurofeedback, neutraceutical supplementation (e.g. omega 3’s) craniosachral therapy, neurofeedback and other approaches.

Dr. Steven Best (Psychiatrist, Chicago, IL)
Dr. Philip DeFina (Neurologist – NJ)
Dr. Guiseppina Feingold (Pediatrician – Nyack, NY)
Dr. Paul Harch (Emergency Medicine and Hyperbaric/Diving Medicine – New Orleans)
Dr. Carol Henricks (Neurologist – Tucson, AZ)
Dr. Stephen Larsen (Psychologist neurofeedback – New Paltz, NY)
Dr. Michael Lewis (former US Army Colonel, DC area)
Dr. David Perlmutter (neurologist – Naples, FL)
Dr. Stephen Xenakis, (former US Army general, DC area)

Physician Contact information:

Dr. Steven Best

The Neuroscience Center

Phone: 847-236-9310

http://www.neuroscience.md

Alternatives, including HBOT, Stem Cells, and others

Dr. Philip DeFina
International Brain Research Foundation, Inc.
Flanders, NJ 07836
Email: pdefina@ibrfinc.org
Phone: 732.494.7600
Alternatives, especially HBOT, neurofeedback, neutraceuticals

Dr. ‘Joe’ Feingold
Valley Health &Hyperbarics
Suffern, New York 10901
(845) 536-4192  http://www.valleyhyperbarics.com/contact_us.html

Alternatives – especially HBOT.  Sensory Learning and Light Therapy

 

Dr. Paul G. Harch or Juliette Lucarini RN
Harch HBOT at Family Physicians’ Center

http://www.hbot.com/

Marrero, LA 70072
(504) 309-4948
Dean of hyperbaric medicine in the USA

Dr. Carol Henricks
Carol L Henricks MD (Neurology) NorthStar Neurology,

Tucson, AZ. 85741

Phone-520-229-1238
http://www.northstarhbot.com/index.php

Dr. John C. Hughes, D.O.

TBI Therapy, LLC
Lafayette, CO 80026

Phone: 303-447-1257

http://www.tbitherapy.com

info@tbitherapy.com

Protégé of Dr. Paul Harch. Involved with Patriot Clinic movement.

Dr. Stephen Larsen, Ph.D.

Director, Stone Mountain Counseling Center

New Paltz, NY 12561

http://stonemountaincenter.com/site/

(845) 658-8083

stephen@stonemountaincenter.com

Thought leader in neurofeedback

Dr. Michael Lewis
dr.michael.lewis@gmail.com
Brain Health Education & Research Institute
Potomac, MD 20854
http://www.brainhealtheducation.org/about-us/

Alternatives, especially Omega-3 fish oils

Dr. David Perlmutter

hbot@hughescenternaples.com

Hughes Center for Functional Medicine

Naples, Florida

(239) 434-9699

https://hughescenternaples.com/

Alternatives, especially HBOT, nutrition, supplements

Dr. Stephen Xenakis
Bethesda Hyperbaric Oxygen Therapy (BHOT)
(240) 293-2222
http://www.bethesdahbot.com/contact/
HBOT and other alternatives

Additional centers for HBOT and other alternative Therapies:

Dr. David A. Steenblock, D.O.

San Clemente, CA 92673

Phone: 949-367-8870

http://personalized-regenerative-medicine.com/contact/

HBOT and other alternatives

 

Neubauer Hyperbaric Neurologic Center

Lauderdale By The Sea, FL 33308

(800) 552-0255

http://oceanhbo.com/

info@oceanhbo.com

HBOT and wide range of other alternatives

 

Idaho Hyperbarics

Pocatello, Idaho 83201

(208) 237-1151

jeff@idahohyperbarics.com

Dr. Michael Baker, Dr. Charles Garrison, Dr. Michael Gregson

HBOT

 

HOPE Connection
North Reading, MA 01864
Office: (978) 664-8100

info@hope-connection.com

HBOT

 

Hyperbaric Healing Institute

Kansas City, Missouri 64153

(816) 801-7878

info@OxygenUnderPressure.com

HBOT

 

Fayetteville Hyperbarics

Fayetteville, NC 28304

(910) 920-1165

info@fayettevillehbot.com

Dr. Cynthia Wells-McLemore, M.D.

HBOT, functional medicine

 

Sara’s Garden

Wauseon, OH 43567

(419) 335-7272

info@sarasgarden.org

HBOT and other alternatives

 

Oxygen Oasis

Langhorne, PA 19047

(215) 352-3720

janedarnell@o2oasis.com

HBOT for wide range of neurological conditions

 

Island Hyperbaric Center

Pincourt, Quebec, Canada

(866) 677- 7978

info@centrehyperbare.com

Claudine Lanoix

HBOT, Infrared Sauna, Quadriciser