Wednesday, December 21, 2011
Saturday, October 22, 2011
A controversial debate I agree but as I said earlier, it still makes sense to me to use a hands free mobile or text and restrict useage to only when necessary.
Enjoy the weekend everyone.
Thursday, October 20, 2011
I was very lucky and my neurosurgeon was the first to make comment that he wished more doctors were like mine and acted quickly but my symptoms included a uncontrollable twitching leg nerve which suggested to my doctor something neurological and epileptic in manner.
I'm not suggesting that only people having seizures in the clinic waiting room will be diagnosed correctly straight away and I feel that maybe many doctors are criticised unfairly when you consider that brain tumours cannot be seen and are still a fairly rare condition. If you think that out of 1000 people complaining of similar symptoms that only one or maybe 2 would have a brain tumour it must be pretty difficult to get it right straight away each time.
I think the trick here is to make yourself heard and explain exactly what you are feeling and what is happening to your body. Its no good saying I feel a little tired this week and think I may need my eyes testing again because I'm experiencing a few headaches. Help yourself by monitoring what is happening. If you are experiencing anything that is unusual for you and you are concerned about it then be persistent and insist on it being investigated.
I have said it before in earlier posts but it pays to be in tune with your own body!
Tuesday, October 18, 2011
Presented by Dr Thomas Steineke, at the Diagnosis Brain Tumor - You Are NOT AloneIII conference, 2009
The brain tumors mentioned in this video are as follows:
Benign Brain Tumours
Keyhole & Minimally invasive techniques
In Summary re Meningioma Brain Tumors
90% are grade 1 or benign
With these tumours - if they are able to take them all out - IT IS A CURE!
5-7% are atypical - ie more aggressive and can turn into a malignant tumour
3-5% are malignant
Incidence: 2 in 100,000 - instance rises with age
This figure is probably higher as many are not found until autopsy
Meningiomas are more prevalent in women
History of radiation treatment
Cell phones ?? Not conclusive - use ear pieces (sensible suggestion)
Presentation - Meningioma Symptoms
Certain symptoms are associated with tumours in certain places.
Meningiomas symptoms are caused by the tumor pressing on the brain
If it is easily removed then you have A CURE
Unfortunately many benign tumours are in places that are not easy to get to i.e. behind the optic nerve
Observation and scans for - slow growing and small tumours
Surgery - larger tumours/symptomatic which have immediate and long term cure therefore less follow up needed
Gamma Knife - less than 3cm not near optic nerves with good long term control
Tuesday, October 4, 2011
Don't like to mention it yet as it is only October, however it will be upon us before we know it and it's getting earlier each year so without further ado and because, as you know I love to promote this charity that does so much good, Christmas cards - There, I've said it (Sorry!)
Saturday, August 13, 2011
Friday, May 27, 2011
Wednesday, May 25, 2011
One thing about having had a brain tumour is that it pulls you up and makes you think about what is important in life and how you should go about making the most of it. We are in the incredibly lucky position of being Internet marketers now and therefore as long as we have our laptops and can ensure an Internet connection we can continue to work from where-ever we are. I lived for 14 years in Australia in what now seems like the distant past, as so much has changed in my life and was desperate to come back for a visit, so my husband said at the end of last year that that is what we would do then - we would make it happen!
So I thought rather than some meningioma news this time I would share some of my photos of life in OZ with you because this is what life so beautiful and so worth living.
Sunday, May 22, 2011
Monday, May 16, 2011
Brain Tumour UK is the leading, caring charity committed to fighting brain tumours. Personalised support is available online, on the phone, by email and through friendly support groups. Their scientific research improves the quality of life for brain tumour patients and identifies better brain tumour treatments. They raise awareness to change things for the better for everyone affected by a brain tumour.
For more information: http://www.braintumouruk.org.uk
Sunday, May 8, 2011
- Born April 9 1957, Pedrena, Spain -
Seve left his footprint on the sporting world on golf.
There will never be another golfer quite like Seve Ballesteros.
Perhaps no other sportsman quite like him either.
- 7th May 2011, Dies at home in northern Spain at the age of 54
due to respiratory failure.
A sad day and my condolences to the family. A brave battle was
fought. Rest in Peace Seve - You will be missed by many.
Continued research is vital to improving the lives of people diagnosed with brain tumours.
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 email@example.com 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.