Resources

Information on this website is not intended as a substitute for the medical advice of physicians. All readers should regularly consult a physician in matters relating to his/her health, particularly with respect to any symptoms that may require diagnosis or medical attention.

Please feel free to pass on any other resources that you feel will benefit other readers and visitors.

Breaking News! Study on “The impact of surgical resection on headache disability and quality of life in patients with colloid cyst” released in Cephalalgia. All through the efforts of my online brain tumor support group and Johns Hopkins University (Dr. Quinones and his team) – collaborating together and working towards helping improve lives and the quality of life. Read the abstract here.

Or watch a video about it here.


Brain Tumour Foundation of Canada

The Brain Tumour Foundation of Canada is a dedicated team of volunteers, patients, survivors, family members, health care professionals and staff, determined to make the journey with a brain tumour one full of hope and support. They work collaboratively to serve the needs of those Canadians affected by all types of brain tumours.

Find information on brain tumours, request an information handbook, look for support groups or even get involved as a volunteer.

 


National Brain Tumor Society

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The National Brain Tumor Society is committed to improving the lives of all those affected by brain tumors by driving systemic change to improve the pace of drug discovery and development.

Good source for downloadable books on brain tumors and caregiver information.

 


American Brain Tumor Association

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The ABTA is a non-profit organization whose mission is to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis.

A great source of information on brain tumors, treatment, research and ways to get involved.

 


Support groups

support groups

Support groups can be a very important part of life as a brain tumor patient whether in person or online. Having conversations and connecting with people who are experiencing similar symptoms or feelings can make the journey a bit easier. Ask your health care provider if they can recommend any or contact the Brain Tumor Association in your country. Facebook will no doubt be home to a support group for the type of brain tumor you have. I still belong to my Facebook group and it was a lifeline.

 


Suffering from migraines?

headache

I was recommended this article written by Dr. John Carey (Johns Hopkins) and Dr. Michael Teixido (Jefferson Medical College). It reviews migraines, how they happen, the triggers, medications and the migraine diet. Since many brain tumor patients seem to suffer from headaches and migraines, I decided to post this here as it has been invaluable.

 


Brain tumors and fatigue

sleep

A great summary read for those battling fatigue especially post surgery. It made me reassess a few things in my life in order to preserve my energy and grow my energy as well.

 


Vestibular Disorders Association

vestibular

VEDA is a highly respected source of scientifically credible information on vestibular disorders. I found this useful when I was battling with imbalance and vertigo, both before and after surgery.

 


 

The Brain Tumour Charity

brain-tumor-charity

The Brain Tumour Charity is the UK’s largest dedicated brain tumour charity, committed to fighting brain tumours on all fronts.  They fund scientific and clinical research into brain tumours and offer support and information to those affected, whilst raising awareness and influencing policy. Their aim is to improve understanding, diagnosis and treatment of brain tumours

 


The International Brain Tumour Alliance

IBTA Logo

 

 

The International Brain Tumour Alliance (IBTA) is a global network founded in 2005 as a dynamic worldwide community for brain tumour patient organisations and others involved in the field of neuro oncology.

 

 

 

 


Books and Blogs

I have read a lot of books about the brain and brain tumors  since being diagnosed. And I still continue to do so. I also  read many personal and scientific blogs about the brain. I  have the utmost respect and fascination for it! Here are my  favorites. Please send me any of yours to add to the  resource section.

Blogs

http://greymadder.net/

http://www.everywhereist.com/70-things-i-learned-from-having-a-brain-tumor/ 

https://glioblastology.com/

http://anneethompson.com/how-to/how-to-have-a-brain-tumour/ 

http://www.mymigrainebrain.com/

Books

Non-Fiction

Curveball: When Life Throws You a Brain Tumor (Liz Holzemer)

Becoming Dr. Q: My Journey from Migrant Farm Worker to Brain Surgeon (Alfredo Quinones-Hinojosa)

Me. Myself and My Brain Stem Tumour: Memoirs of a Pediatric Brian Cancer Survivor (Bayan Azizi)

My Stroke of Insight: A Brain Scientist’s Personal Journey (Jill Bolte Taylor)

Allison’s Brain (Robert McMechan) 

Hell in the Head: My War with a Brain Tumor and Other Evil Things (David Douglas Shannon)

The Man Who Mistook His Wife For A Hat: And Other Clinical Tales (Oliver Sacks)

Diary of a Headcase (Faiza Siddiqui)

The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity (Norman Doidge)

Do No Harm: Stories of Life, Death and Brain Surgery (Henry Marsh)

http://www.braintumour.ca/245/storybook  (Children’s storybook for children affected by brain tumors either personally or through someone close to them)

I had Brain Surgery, What’s Your Excuse? (Suzy Becker)

Musicophilia: Tales of Music and the Brain (Oliver Sacks)

Brain on Fire: My month of madness (Susannah Cahalan)

Where is the Mango Princess? A journey back from Brain injury (Cathy Crimmins)

The Woman who Changed her Brain (Barbara Arrowsmith-Young)

Fiction

Still Alice (Lisa Genova)

Left Neglected (Lisa Genova)

What Alice Forgot (Liane Moriarty)

Other worthwhile online reads

https://migraine.com/

http://www.braininjury-explanation.com/causes-of-brain-injury/brain-injury-by-a-tumor-cancer

http://medicaltreatmentguidance.net/20-life-changing-android-apps-for-people-with-brain-injury/

Watch the Brain Library Video for an overview of what good for your reading list!