Awake Craniotomy With Mapping

http://www.dailymail.co.uk/health/article-2758335/Mother-inoperable-brain-tumour-given-just-months-live-survive-15-years-undergoing-radical-surgery-US.html#i-d0bafddf918253cd

Anybody else had experience of 'awake craniotomy with mapping'?

Friday 19th July 2013 - 7 Years Clear!

I had a really good feeling when I woke up on Friday morning last week because exactly 7 years ago on the 19th I made my way to the hospital to have my meningioma removed. I was very apprehensive and scared and lots of worries were invading my very happy life. I can report that it was accessible, it was benign, all was removed successfully and I am still here, still living my happy life thanks to the skill of my medical team. So, I woke up and decided to take the day off, read my book on the beach for a few hours, maybe buy a bottle of bubbles for dinner and celebrate in style!

I did all these things and enjoyed my day with my fabulous husband and family. Later that same evening I received a distressed email from a close friend to say that his brother had just been diagnosed with a malignant brain tumour but not many details at that stage. I offered my support and advised how important it was for him to stay positive for his brother and to remain calm until further details were forthcoming.

Was this my poke in the ribs to remind me to forever be grateful for how lucky I am? Was it a message to celebrate but to remain cautious? Whatever the message, I remain very thankful and always aware that there is always someone, somewhere else fighting to survive.

Hat Wearing Day For Brain Tumour Research 28th March

I joined everyone one else and wore my hat for Brain Tumour Awareness on 28th March, how about you?

Donation from this years book sales confirmed below.

Brain Tumour UK Fundraising Event

Brain Tumour UK are hosting their largest fundraising gala to date in November this year and it looks like it's going to be spectacular. It's called : The Big Top Extravaganza

The venue is in central London on the 23rd of November and includes an evening of cabaret with Burlesque performers, breathtaking aerial entertainment. Truly a circus of top class entertainment, magic and comedy and a three-course dinner and dancing. This is certainly a night not to be missed if you plan on being in and around London at this time.

The proceeds of this event will fund research into paediatric brain tumours and Phil Tufnell, a leading patron for Brain Tumour UK will be in attendance together with other celebrities.

Tickets are £150 each or £1,500 for a table of 10 guests.

For more information visit:

http://www.bigtopextravaganza.co.uk

Or call the booking hotline on 0845 4500 386

Recent Meningioma Webinar - Guest Speaker Dr. Michael McDermott

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.

Meningiomas More Common In Women!

Meningiomas account for approximately 44% of all intracranial tumors in females and 21% in males. 74% of all diagnosed meningiomas occur in women. They are the only variety of central nervous system tumor diagnosed more often in women than in men and can oocur at any age but seem to be more prevalent in women over 40.

So, the obvious question to the above facts would be why more in women than men? We know we are diffeerent so surely there has to be an outstanding reason?

The only known risk factor for meningiomas is previous exposure to ionizing radiation of the head, such as being exposed to the radiation while being treated for a previous brain tumor. It has also been discovered that there is a correlation between the disease Neurofibromatosis and meningiomas. I was also advised that it could possibly be a chromosomal abnormality but due to so many not being diagnosed and the lack of funding for research in this area the reasons are largely unknown.

What we are told is that there is certain evidence that elevated levels of female hormones may promote growth or regrowth of meningiomas and these facts could account for the percentage rates above.

It could be that whilst we thought we were taking a proactive stance in looking after our bodies ladies, in a controlled fashion, the benefits of such hormonal medication as birth control, infertility treatments, hormone replacement therepy may be outweighed by the risks for a percentage of women and these medications should certainly be discussed fully and carefully for any women who have previously been treated for a meningioma.

What Are Meningiomas?

Meningiomas are tumors that grow on the delicate outer covering of the brain. This covering is called the meninges.

If you have just been told that you have a brain tumor you are probably still in shock and trying to process the information. For me, I felt like everything in my life had turned upside down and nothing was making any sense. I had so many questions; am I going to die or can it be cured? What are my options for treatment, will I still be able to function as I am now? What are the risks and after effects? How do I tell my family? And what the heck is a meningioma anyway, why have I got one and how did I get it?

I had never known anyone else who had been diagnosed with a brain tumor so the first thing I did was to try and hold it together and set about finding out as much as I could about this diagnosis. Amazingly, I found that thousands of people are diagnosed with meningiomas each year! So, I was not alone and it appeared that many have successful treatments and continue on with a productive and satisfying life.

A meningioma tumor develops from the meninges, the membrane that surrounds the brain and spinal cord. The mininges are made up of three layers, called the dura mater, arachnoid and pia mater. Most meningiomas are benign tumors. However, this benign brain tumor is unlike benign tumors elsewhere in the body and if they are located in a position that is difficult to access can be life threatening or cause disability. Most benign meningiomas appear to grow slowly. I was totally unaware of mine, which was 3cm diameter when removed. I was made aware of its presence because it was fighting for space and pressing into my brain which began affecting another part of my body which was concerning enough tonecessitate a visit to my doctor. Although most people develop a single meningioma, it is possible to have several tumors growing simultaneously in different parts of the brain and spinal cord. To follow my story in full take a look at my book 'My Brain Tumour'.

Good Positive Vibes Required

I recently received some communication from Lesly following a post and felt it appropriate to reply and send lots of good positive vibes.

Thanks for the comment Lesly. I hope you are finding a way to remain as positive as you can. I was certainly shell shocked at the beginning with an overwhelming feelings of 'Why me?' and 'How did this happen?' but I learnt a great deal about human nature and how much people around you care and are prepared to help at a time like this.

You may find it helps to write down your feelings in note form at the end of each day. This helped me to come to terms with facts, think about and face any decisions that I had to make, whether they were treatment based or emotional. It was also what brought about the E-book afterwards.

The E-book , which believe me relates a total roller coaster of emotion was actually quite difficult to write as it brought back many memories and made me revisit the fear of the situation. But, it also made me giggle and smile to recall the funny and loving moments and the biggest opportunity it presented was a huge platform to say thank you to the fabulous people around me.
Big hugs from me to you Lesly.

Brain Tumours and Driving Regulations

Found some very interesting stuff recently which could be very important to some of you. I'm sharing this info because nobody mentioned it to me at all.

I have found that there are strict rules laid down by the DVLA (Drivers and Vehicle Licensing Assoc.) regarding epilectic fits and Brain Tumours. Now, bear in mind that the hospital will not contact the DVLA, but it is your responsibility to do so and your doctor will advise you how to go about this.

If you have had an epileptic fit, the Drivers and Vehicle Licensing Association will not allow you to drive for a year after your last fit and this period of time may be increased depending on your own circumstances and medical assessments.

If you have a benign meningioma (which is what this particular blog concentrates on) and have not had any seizures, the DVLA requires that you do not drive for at least six months after surgery. No-one made me aware of this and I'm not sure if I was supposed to know this sort of thing and whether it would have affected my insurance - but I didn't and I did drive. So this is why I am telling you, just in case :D)

If your occupation involves driving vehicles, such as a LGV (large goods vehicle) or a PCV (passenger carrying vehicle) you will not be able to drive for at least five years after surgery. If you have had any seizures you will not be able to drive this type of vehicle until 10 years after your last fit.

I'm not sure in the circumstances that you would feel it appropriate to take the risk anyway but in some instances you may require a medical assessment before your driving licence is renewed.