Saturday, March 12, 2011
Brain Tumour UK is the leading, caring charity committed to fighting brain tumours. They raise awareness to change things for the better, for everyone affected by a brain tumour.
Personalised support is available online, by email, on the phone and through support groups. They are also involved in scientific research to improve the quality of life for brain tumour patients and identify better treatments.
This is where I send donations to from the proceeds of my EBook 'My Brain Tumour'
If interested, please take the time to visit this very informative site for further information about Brain Tumour Awareness Month.
Are you aware? March is Brain Tumour Awareness Month so spread the word and direct people to this website so everyone can get involved.
Lobby your MP: Join Brain Tumour UK, other charities, patients, carers and healthcare professionals on 29 March at Westminster to present the manifesto for people affected by brain tumours to your MP and join them for a reception at Church House, Westminster. Email them on firstname.lastname@example.org for more information.
Friday, March 11, 2011
I don't know if any of you receive info or updates from The National Brain Tumor Society or The Brain Science Foundation but I recently called in to a webinar that was being co-hosted by them both and thought I would share with you a few of the Questions and Answers that were raised that I felt were very useful.
On March 1, 2011, the Brain Science Foundation and the National Brain Tumor Society co-sponsored an informational webinar specifically tailored to share information with Meningioma patients, their caregivers, friends and supporters, and health care professionals.
National brain tumor society and Brain Science Foundation
Guest speaker: Dr. Michael W McDermott from University of California. Professor in Residence of Neurological Surgery.
Dr. McDermott addressed such topic areas as epidemiology, treatment options, and current research initiatives. The webinar was meningioma specific and included a substantial question and answer period, covering a wide range of patient questions.
Question and Answer Session
Q1) After having follow up MRI's on an annual basis for 6 years with no change is it ok to extend the frequency of the MRI to every 2 years?
Answer: Yes - Dr.McDermott felt the lack of growth over that interval shows slow or no growth rate and advised that every 2 years would be ok.
Q2) Can diet/rest/exercise/medication or supplements prevent meningioma reoccurence or slow regrowth?
Answer:Dr.McDermott said he obviously recommended good diet, exercise and rest when needed as the norm but advised that there has been no conclusive evidence to show that these factors necessarily influence an improved outcome. More research required.
Q3) If you have more than 2 separate incidences of benign meningioma could the next one be malignant?
Answer: Two different situations here:
Same tumour that recurs twice in same location.
2 Different tumours in separate locations.
Dr McDermott explained that Benign meningiomas usually recur again as benign menigiomas but what is open to question is whether some of the treatments used to treat the first tumor may in fact influence a higher grade of meningioma in the second tumor. He states that the treatment risk compared to outcome of degeneration is considered very low.
Q4) What might cause multiple meningiomas in different parts of the brain?
Answer: About 5% of patients have multiple meningiomas on diagnosis and it is believed that in the absense of a history of prior radiation or therepy to the face or scalp as a child, this could be a genetic syndrome ie NF2(Neuro fibrosis) gene defect. Patients would be referred to a medical geneticist for confirmation.
Q5) Is there a link between meningiomas and Xray and if so should I be concerned about annual dental xrays and mamograms? (Great Question. One that I have asked myself!)
Answer: There is a link - usually where the head and neck are concerned.
Past repeated panoramic dental xrays using less sofisticated equipment showed a slight increase in some areas. However, with present equipment the risk is very low and outcomes unknown.
Mamograms are far removed from the intercranial site and therefore the answer is no we should not be worried.
Q6) What are the side effects from meningioma radio therapy treatment and what is the risk time-line for these?
Answer: Risks are dependant upon tumor location and volume of treatment required
Acute side effects: short term side effects - hair loss, redness of the skin, loss of energy, fatique and temporary swelling of the brain.
Any permanent damage is less than 3% dependant on tumor location.
Q7) What is the difference between Radio surgery and Radio Therapy treatments?
Answer: Radio surgery - delivery of larger dose of radio therapy in a single session.
Radio Therapy - small amount delivered once a day over a longer period of time.
Difference = Dose delivery and time administered.
Q8) What is the effect on reproduction oportunities for women. Does being pregnant greatly increase the risk of recurrence due to hormone changes?
Answer: Non conclusive - insufficient data available. More research required!
Q9) My daughter and I have both had meningiomas - are they hereditary and should we worry about other family members?
Answer: 1st degree relatives(i.e. Mother - son/daughter or siblings) - A Medical Geneticist referal would be recommended to check for NF2 gene deletion.
Q10) With a craniotomy is scalp pain and numbness common and if so when will it subside?
Answer: Pain and numbness is location dependant - SENSORY nerves are cut through DURING SURGERY but will regenerate. Patients will notice sharp shooting pains on head movement and chewing initially and a duration of 3-6 months is typical.
NB. As a personal note to Question 11, my meningioma was surgically removed from the top of my head and my experiences were itching (due I thought to the healing process) but I still have severe itching periodically. The strangest sensation I experienced was a slight upward movement of the skull plate when sneezing. This has thankfully stopped but there were times when I was sure I was going to sneeze the top of my head off and actually used to place my hand on top of my head if I knew a sneeze was immminent :D
Hope this was a useful exerices for some of you.