Thursday, 13 December 2012

What to say next time I see the Neurologist?

My next appointment for a follow-up MRI has arrived  ..... the scan date is 15th January 2013.  I will certainly be glad to have it done so that, hopefully, my mind can be put at rest regarding possible further growth of either Feckit or Fuss. Meantime I am getting my thoughts in order as to which symptoms/problems are the same as before and which are new/changed. It's best to have them sorted out in advance as once in the consulting room my wits seem to desert me and I forget everything I meant to say!!!!

The following are problems that remain much the same, or have changed only a little:

This is comes and goes variably throughout the day, but seems to be made worse by lying down. I always go off to sleep quite quickly but wake between 3 a.m. and 4.30 a.m. tossing and turning with nausea and a dull, squeezy kind of headache.

Difficulty with words
I find that I cannot think of the word I want to say or write. This happens all the time and I often have to just give up trying to say or write whatever it is. My friends are very good about it but it is an embarassment.

Poor Memory
This seems to me to be more than just the short term memory loss that comes with ageing! I sometimes find that there are whole chunks that I should be able to remember but I can't. John is always saying "but you must remember that, - you know, it was the time when ...." but it's no good I just cannot recall whatever it is. The occasion could be last week or ten years ago, length of time does not seem to have any bearing on it!

Scalp tenderness and transient tingling and numbness of face and lips
The scalp tenderness is permanent but tingling and numbness only happens occasionally.

The following I would describe as new problems, in as much as they started within the last few months: 

I don't know why but I have forgotten to report this to my GP ... probably because it has become part of me! ... but I have a continuous high-pitched whistle in my ears. Difficult to describe .. the nearest thing would be the sort of whistling that one hears when tuning in a radio station. I only realised I had it when one day it suddenly stopped for a few minutes .... !

Shooting pains in temples and ears
I have had these on the (L) since before diagnosis but am now getting them in and around the (R) ear occasionally as well.

Left-sided tooth pain 
This started in June/July and was particularly bad on my trip to UK. The pain is excruciating in a bad attack. However, increasing Amitriptyline to 30mg at night seems to have reduced both the number of attacks and the ferocity! My dentist has checked out my teeth and can find nothing, and investigations for Giant Cell Arteritis as a possible cause proved negative.

Visual disturbance
As I wrote a few posts back, the "falling rain" is less obvious than it was at first. But I can still see it quite clearly under certain lighting conditions, both indoors and out!

However, all my neurological tests/signs seem to be OK .... no fits, no staggering, eye movements, reflexes and dementia test all normal so far. So no doubt I am going to feel an idiot if and when I get to discuss them with the specialist!

Sunday, 2 December 2012

One thing or another?

The good new is that all my blood results were normal and the histology on my temporal artery biopsy was negative. Thankfully that means that I do not have Giant Cell Arteritis!

So what does that mean about my recent symptoms of worsening facial tenderness and attacks of shooting pain in my rear left molars? In fact these symptoms are apparently compatible with Feckit being a petroclival meningioma

"Posterior fossa meningiomas: grow along the underside of the brain near the brainstem and cerebellum. These tumors can compress the cranial nerves causing facial symptoms or loss of hearing. Petroclival tumors can compress the trigeminal nerve, resulting in facial pain (trigeminal neuralgia) or spasms of the facial muscles. Foramen magnum meningiomas grow near the area where the spinal cord connects to the brain and can cause headaches, or other signs of brainstem compression such as difficulty walking."

In one follow-up study of 168 patients over a 21 year period, Kano et al identified 12 patients who had trigeminal neuralgia in association with an ipsilateral petroclival meningioma. So the new symptoms need not necessarily indicate that Feckit is growing any bigger!

Tomorrow I am having the sutures out and I will ask for a 'weaning off' regime for the Prednisone. I am also going to request a referral back to neurology ....  as it is almost two years since I was last seen.

Wednesday, 28 November 2012

Temporal Artery Biopsy (2)

Yesterday was a bit of a bad day because I had developed a cold the day before the biopsy and by yesterday had streaming nose and hacking cough which did not help matters at all. The biopsy wound kept bleeding and I had to renew the pressure bandage, but this morning this has stopped and its looking fine! In addition I developed a nose bleed which trundled on for several hours. Presumably all the bleeding was due to the steroids and aspirin - side effects include reduced clotting time (seemed like clotting time = nil)!

Anyway today I feel a lot better and things are looking up! And I hope to be able to wash my hair (gently) in the shower!

Monday, 26 November 2012

Temporal Artery Biopsy (1)

So, Good, it all went well today. Arrived at the hospital well in time for my appointment at 8 a.m. After a short wait (not crowded at that hour!) I was examined by a very lovely eye surgeon who looked about 25!! He examined the backs my eyes very thoroughly using the slit lamp and also tested the pressures ... passing me with a clean bill of health on both!

After another very short wait I was taken into a consulting room, where I lay on an extremely narrow stretcher bed for the procedure:

1. Shaving a small part of the area to be incised and injecting with local anaesthetic. This was a little painful but only for a minute or so.

2. Lying still while he dug around, snipping about to release a small artery. This took a lot longer than I expected ... around 25 minutes.

3. Suturing up the layers.

4. Application of pressure pad and bandage to suppress bleeding.

5. Verbal and written instructions on care of wound with the various do's and don'ts.

6. Results of biopsy in 2-3 days.

7. Sutures out next Monday or Tuesday at my own GP surgery.

From arrival to departure took about 1hr 45 mins.

If results are indicative of Giant Cell Arteritis then I will be taking Prednisone regularly for 12 months or so, at least. If results are negative I will be referred back to the Neurologist.

Pressure bandage can come off tomorrow ... will post pic of the wound then!

Sunday, 25 November 2012

The rain is easing off!

Well the "rain" in front of my eyes seems to have lessened quite a bit now I am on the blasted steroids again! I can only see it now when the light is poor. I rang about my blood test results this morning and all were normal, thank goodness! However, these results do not fit with a possible diagnosis of Giant Cell Arteritis so it will be interesting to see what happens when I visit the Eye Clinic for the temporal biopsy. 

Although many of my current symptoms seem to fit with Polymyalgia Rheumatica and GCA they could also be caused by the presence of Feckit and/or Fuss as they are both skull-based tumours. Anyway, we will see what they say tomorrow at the hospital .......

Wednesday, 21 November 2012

Why is it raining? Is it Temporal Arteritis?

OK. So I can see rain when it isn't raining ... but not in sunlight or bright artificial light. So I get jaw pain (left) linked to chewing or talking too much!!! Headaches have been worse this past three weeks. Other symptoms are the same as per bloody usual, i.e, woken from sleep about 3 a.m. with nausea, headache and, just recently, fast pounding heart rate. Sound like a bad case of hypochondria? 

Don't worry .... don't think that I haven't already thought of that!

However, I did feel that the visual 'symptom' of seeing rain falling outdoors (and in) when it wasn't raining was perhaps something to report to my family doctor? So off I went today. After a thorough discussion of my symptoms where I voiced my concerns that my problems could be due to either Feckit or Fuss, my doctor was concerned that we should first eliminate a differential diagnosis of Temporal Arteritis. This is considered by some to be on the other end of the spectrum of Polymyalgia Rheumatica (PMR).... a condition that I was tested for last year where the results were inconclusive.



Giant cell arteritis is an inflammation of the lining of your arteries — the blood vessels that carry oxygen-rich blood from your heart to the rest of your body. Most often, it affects the arteries in your head, especially those in your temples. For this reason, giant cell arteritis is sometimes called temporal arteritis or cranial arteritis.

Giant cell arteritis frequently causes headaches, jaw pain, and blurred or double vision. Blindness and, less often, stroke are the most serious complications of giant cell arteritis.

Prompt treatment of giant cell arteritis is critical in order to prevent permanent tissue damage and loss of vision. Corticosteroid medications usually relieve symptoms of giant cell arteritis and may prevent loss of vision. You'll likely begin to feel better within days of starting your treatment.


The most common symptoms of giant cell arteritis are head pain and tenderness — often severe — that usually occurs in both temples. Some people, however, have pain in only one temple or in the front of the head.

Signs and symptoms of giant cell arteritis can vary. For some people, the onset of the condition feels like the flu — with muscle stiffness and aches (myalgia) around the shoulders and hips, fever and fatigue, as well as headaches.

Generally, signs and symptoms of giant cell arteritis include:

1.Persistent, severe head pain and tenderness, usually in your temple area

2. Vision loss or double vision

3. Scalp tenderness — it may hurt to comb your hair or even to lay your head on a pillow, especially where the arteries are inflamed

4. Jaw pain (jaw claudication) when you chew or open your mouth wide

5. Sudden, permanent loss of vision in one eye

6. Fever

7. Unexplained weight loss

8. Pain and stiffness in the neck, shoulders or hips are common symptoms of a related disorder, polymyalgia rheumatica. 

Approximately half the people with giant cell arteritis also have polymyalgia rheumatica.

When to see a doctor

If you develop a new, persistent headache or any of the problems listed above, see your doctor without delay. If you're diagnosed with giant cell arteritis, starting treatment as soon as possible can usually help prevent blindness.

So the upshot of all that is that I have had URGENT bloods taken for various tests and an appointment has been made for me to attend the Ophthalmology (Eye) Department next Tuesday for a Temporal Biopsy (more later on that - I am too brain dead at the moment to explain further!).

Due to the risk of blindness if untreated I have had to re-commence steroids at once (Prednisone 60mg daily)  ..... oh joy! - Is it back to hamster cheeks, thick neck, weight gain and manic mood swings? .....

To minimise the risk of STROKE I have been started on regular enteric-coated Aspirin daily ... 

And to PROTECT me from the risk of gastro-intestinal BLEEDING (as a SIDE-EFFECT steroids and aspirin) I have been started on regular Omeprazole (gastric acid inhibitor) daily.

Wouldn't it be simpler to just DIE?

NO! NO! NO! ............ Believe me THAT WAS A JOKE, OK?

Anyway ...... this is all just a safety measure in case Giant Cell Arteritis is the underlying cause of my symptoms.  My own guess would be that it is those little buggers Feckit and Fuss. 

But time alone will tell ..........

Sunday, 18 November 2012

When it's raining? .........

I had the strangest experience last evening. It had been a funny sort of day for weather, a mixture of sunshine and light showers with a brisk breeze. Around 9pm I left home in the car to meet John from transport bringing him back from a 3-day golfing trip. It was twilight and I parked the car and began what was to be quite a long wait. I started to wish that I had brought a book with me, but sat and amused myself by watching the rain falling instead.

The rain was coming down quite fast - very tiny drops, some of which swirled around a little like tiny snowflakes. After several minutes I realised that the windscreen did not appear to be wet, so I began looking all around through the windows and, Yes, I could see the fine drizzle from every angle. Puzzled I got out of the car only to find that it was not raining at all. Although I could still see it falling as I had whilst inside no drops were landing on me or anywhere else!!

I found this really quite scary as I realised that what I was seeing was some sort of hallucination. In due course John arrived and as I started to drive home I asked him if it was raining and he said it wasn't. Once inside I looked out of the window (by now it was completely dark) and could still see the rain and then, having settled quietly in a chair, I found it was raining inside as well! And it continued until I went to bed.

I woke up this morning to a bright and sunny day and found that I could only see the mysterious rainfall if I looked into the shadows.

Naturally enough I have been looking on the Internet for an explanation of the phenomenon of visual hallucinations and it appears that there are a number of types which vary according to cause. One type which occurs in psychologically healthy people is called Charles Bonnett syndrome which has been extensively studied by neurologist and author Oliver Sacks.

'His studies have determined that over the course of a person’s life, there are subtle changes that can occur within the structural set up of the visual cortex, causing one to hallucinate. “There is a special form of hallucinations that could go along with deteriorating vision or blindness… As the visual parts of the brain are no longer getting any input, they become hyperactive…they begin to fire spontaneously and you start to see things,” said Sacks'

Charles Bonnett syndrome usually affects those with impaired sight, who may start to have strange, visual hallucinations, sometimes just of patterns but often more elaborate visions of complex scenes or ranks of people in exotic dress. Perhaps 20 percent of those losing their vision or hearing may have such hallucinations.

Other causes of visual hallucinations include Parkinsons disease, dementia with Lewy bodies (DLB), posterior cortical atrophy, seizures, migraine, certain drugs, errors of metabolism and tumours. 

Features of Visual Hallucination/Most Likely Causes

Simple patterns, spots, shapes, or lines; 

unilateral distribution; associated with headache:               
Migraine, seizure, tumor

Macropsia, micropsia, metamorphopsia:                              

Seizure, Creutzfeldt-Jakob disease

Associated with going to, or waking from, sleep:

Hypnagogic or hypnopompic hallucinations                           

Confabulation of all vision:  

Anton's syndrome

Frightening content:

Psychotic disorder, delirium, hallucinogenic drug

Good insight:

Charles Bonnet syndrome, migraine, peduncular hallucinosis

Nothing I have found so far really fits in with my hallucination of continuous rainfall ........ just another thing to ask the doctor about along with the toothache, tingly lip, pains in ear ....... !!

Friday, 9 November 2012

' I have much ado to know myself '

"In sooth, I know not why I am so sad: It wearies me; you say it wearies you; But how I caught it, found it, or came by it, What stuff 'tis made of, whereof it is born, I am to learn; And such a want-wit sadness makes of me, That I have much ado to know myself."       [Antonio, 'The Merchant of Venice']' 

There is no excuse. I have so much to be thankful for, and so very much to look forward to. And yet I feel like weeping. 

It seems that all the dark and worrisome things in this world are gaining ground. I want to fight against them but I don't know if I have the energy. I can easily understand why people become reclusive. Inner peace and silence is so hard to come by.

I am indeed a 'want-wit' these days!

But family and true friends are the rocks I cling to and it is thanks to them that I do not sink.

Tuesday, 23 October 2012

Worry beads ..... facial symptoms

This is just a quick post because its late and I need to get a few hours in before the usual head pains and nausea start (usually around 3 a.m.). I have written before about the dreadful pains in my left molars a few months ago, which went as suddenly as they arrived. At the time I got my teeth checked out with the dentist and she could find nothing to explain it. 

Then it all started up again while in UK in August when visiting my youngest daughter. That time it was worse and really quite unbearable, although that's a silly thing to say as I did manage to bear it!! However, the pain was excruciating while it lasted and that time was triggered not only when chewing but when speaking! ... a very irksome thing for me to have to keep quiet in order to keep the pain at bay! 

When I got back to UK I went to my GP who thought it might be caused by infected sinuses and prescribed antibiotics. And in due course the pain disappeared as suddenly as it had arrived and life went on as per...... ............... until yesterday that is, when it started all over again. 

This time it does not seem to be brought on by chewing or talking but by TOUCH. If I touch the left side of my face (even very lightly, from level with my nose down to my chin) a piercing stab of pain occurs in my left lower jaw. Also the left side of my upper and lower lip feel numb and tingly...... all a bit alarming.... 

This together with my ongoing symptom of tenderness all down the left side of my head from scalp to chin, which I have had now for many, many months it seems, makes me think that the cause is not my sinuses at all but my old friend the Trigeminal nerve. 

 I have been on Amytriptylline for months now to ease the shooting pains in my left ear. Although this drug is a tricyclic anti-depressant it is often used in small doses in the control of facial pain caused by irritation of the trigeminal nerve. Having initially begun on the smallest dose of 10mg at night I have, over recent months, had to increase the dose to 20mg, and in the past month or so to 30mg. 

 So of course what is worrying me now is the fact that, despite this drug, I am now getting additional symptoms in the form of lightning attacks of pain in my teeth on the left side. WHAT is going on???? 

The obvious worry is that either Feckit or Fuss might be growing bigger  .............. I really would rather not have to go cap in hand to the doctor again but I suppose I'm going to have to if things don't calm down.

Friday, 28 September 2012

A month of family events!

What a time its been recently with all sorts of things going on in the family. 
Of course, there was the loss of dear old Ollie last week ... we still cannot believe that he is no more. He is buried in the garden and we've planted a yellow bush rose over him. Pru has been quite upset after losing her brother ... moaning and yowling and unable to sleep alone at night. I have had to do something that I swore I never would and take her into bed with me! It has helped a bit but she still gets up and goes searching. I think maybe she has been calmer the last day or so.

On a happier note our youngest daughter is returning to health after all her setbacks following the birth of her first baby. He, of course, is gorgeous and I miss them both terribly. It was lovely to be able to go to UK and visit for a while in August. He is growing so fast! We are all so very excited about their planned trip to see us in December this year.

September and October sees lots of happenings in our immediate family ..... Firstly it was our middle daughter's birthday and also her 20th wedding anniversary, which they celebrated with a week's trip to Sydney. They had a wonderful time and their two girls had nanny to stay to look after them ..... so we had a lovely time too!

Their youngest was 12 years old yesterday, - how the years fly past! It doesn't seem 5 minutes since she was born!!!! And 'big' sister will be 15 years in November. We are so very lucky to live near them.

Our eldest daughter back in the UK had a Big birthday this week .... 50 yrs. And she will hate me for saying so! But she doesn't look her age so no-one would guess! Here she is with daughter, Naomi, who also has a Big birthday to celebrate on 1st October .... 21 years old!

Naomi is studying art and jewellery-making at university and here are some examples of her lovely work:

Head notes

I wrote last about the awful tooth pain I was having, and I am happy to say that this has gone after increasing my dose of Amytriptyline from 20mg each night to 30mg. So I tend to think that the toothache was related to the tumour affecting the trigeminal nerve, which continues to give me tenderness and prickling sensations on the left side of my face. If I stop taking the tablets then I also get shooting pains through my left ear.

The nausea and headaches continue to be worse when lying down at night. It all wears off once I am up and the morning progresses but then worsens again later in the day. My memory is pretty crappy but does not seem to have got any worse, which is something! 

In the last couple of weeks I have become more aware of a high-pitched ringing in my ears .... this is not really bothering me as I only become aware that it's there when it stops for a while! More alarming is intermittent stabs of pain in the right side of my head! .... maybe in sympathy of the left side? I wonder!

It's all a question of trying to live with these nuisances and getting on with things!

Wednesday, 19 September 2012


Horrible week. We've been half expecting this moment for a long time but when it came it was all so very sad. Poor old Ollie (16 years old) has been on medications for a long time for heart failure, hyperthyroidism and, more recently, progressive renal failure. Sadly he reached the end of his tether on Tuesday. 

The vet and her assistant very kindly came to the house and administered the fatal injection while Ollie was cuddled on my lap. It was very peaceful for him and he did not have the distress of going to "that place where they stick things into me". Wish we humans could have the option to die like that.

We are left in bits. So too is his sister, Pru. But what lovely memories we have of a loving, playful and loyal friend. XXX

Tuesday, 21 August 2012

More than I can chew?

I'm comming to the end of a four week stay in UK where I have been visiting my youngest daughter and her new baby boy. She has had a very rough time of it with complications leading to several surgeries but happily looks to be on the mend at last. The baby, of course, is lovely and its been great to have hands on care of such a wee one after all these years.

When I get home to New Zealand I will have to do some checking with the doctor regarding some newish symptoms that have developed over the past three months or so. In addition to the usual problems with facial pain and tenderness on the left side of my face I suddenly developed occasional bouts of excruciating toothache in my left rear molar. This happened a couple of times before I left on my trip but luckily I had a check-up with my dentist pending. Examination and x-rays could find nothing amiss so I left England reasonably happy that all was well.

However, whilst in UK, I have had two really bad bouts and several short 'warning' stabs. Although the 'bad' bouts only last about 15 mins or so the pain is unbelievable and seems to come on after chewing hard or after a lot of talking!!! Which makes me wonder if this is a further manifestation of Feckit or Fuss affecting the trigeminal nerve. In addition I seem to have developed tinnitus + twinges of pain in my other ear!

Of course none of this need be anything to do with the tumours but I will check it out once I get home. This visit has gone all too quickly and in just three more days I start the long journey back. However, I am looking forward to downloading my photos and posting some up here!!

Tuesday, 19 June 2012

Good News!

Nice to have some good news to blog about ..... we have a new grandson, born 8th June. He is the first boy grandchild, and has three girl cousins. The sad part is that we are 10,000 miles away, but all being well he will be visiting with mum and dad this coming Christmas ....... can't wait!!


Saturday, 16 June 2012

On being a pain!

Thought it might help to jot down a few things for future reference, as its always difficult to remember when a symptom started or when exactly I last saw a doctor for something!

Have not been feeling too good for the past few of weeks ... the pains in my left ear and through my temple have been occurring more frequently and I've also developed a high pitched whistling in both ears. Another 'new' symptom has been "toothache" in my back left molars, top and bottom. I have also started waking in the night with excruciating pain in my left big toe and sometimes my left ankle joint!! So I trotted of to the GP just over a week ago to discuss what might be wrong and what to do about it.

She suggested that I increase the nightly dose of amitriptyline from 10mg to 20mg (this has definitely helped with the shooting pains in my ear and temple, and also with the toothache, so that's great!), and to wean myself off Prozac if I felt that my depression was under control. On the whole I think that my mood has generally improved and I feel less stressed. Although, how much of that is due to Prozac and how much to reducing my commitments, I don't know! Anyhow, I have started to wean myself off those particular tablets and we'll see how it goes ..........

The doc examined my left foot and could not find anything of note so does not think it is gout! However, she noticed a skin lesion on my left lower leg and asked me about it. This lesion has been there for a long time (years) but never heals up, and has slowly, slowly increased in size. Currently it is about 2.5cm x 1cm. Other doctors have seen it in the past and diagnosed a venous ulcer although it is completely dry and never oozes. This doctor was concerned about it as it could be a pre-cancerous lesion and has given me an anti-cancer cream (fluorouracil) to be applied twice a day for four weeks. If this does not heal it up then she will take a biopsy. I've had some blood taken to check for gout, also for thyroid and renal function.

This Friday I had my last session with the counsellor. It has been good to have someone non-judgemental to talk to and I have been able to off load some worries to her. Somewhat like keeping this blog, really so I will probably have to write in it more often now!!

Wednesday, 6 June 2012

Brian Alexander writes about meningioma

By Brian Alexander

"When news broke that singer Sheryl Crow has a benign brain tumor called a meningioma, her representative swatted away concern by saying that “half of us are walking around with [a meningioma] but you don’t really know unless you happen to have an MRI.”

Well, no.

Despite that unnamed representative’s effort to make a brain tumor sound like a pimple, meningiomas are not anywhere near so universal, and, despite the “benign” designation, can be dangerous, leading to severe disabilities, and, in rare cases, death.

“About 2 to 3 percent are malignant,” Dr. Elizabeth Claus, director of medical research at the Yale School of Public Health, a neurosurgeon at Boston’s Brigham and Women’s Hospital, and the principal investigator for the multi-institution Meningioma Consortium, explained in an interview. “Then that is a very serious situation because there’s not much in the way of great treatments. They can metastasize, say to the lungs, and no chemotherapy will work for it.

As the name indicates, a meningioma is a cancer of the meninges, the protective lining that surrounds the brain and spinal cord, often also called the dura.

It’s true that meningiomas are one of the most common types of brain tumors, comprising about one-third of all benign brain tumors, but meningiomas are not nearly as common as Crow’s rep would have you believe. As of 2005, approximately 138,000 Americans were known to have been diagnosed of meningioma.

However, explained Dr. Marc Mayberg, a neurosurgeon at Seattle’s Swedish Neuroscience Institute, “there may be many more, up to 10 times more patients but these people are unaware of it because the tumor is asymptomatic.” 

Sheryl Crow fits perfectly into the meningioma demographic. She’s 50, and rates of meningiomas are highest in middle-aged women.

Recently, medicine, which has focused on treating very deadly brain tumors like gliomas, has realized that it’s been giving benign brain tumors short shrift, so meningiomas have been the subject of renewed scientific interest.

Radiation to the head and neck is the only well-defined cause found so far. A study released last month from UCLA identified 27 cases of meningiomas over a 10-year-period that appear to have arisen following radiation to the head. While such treatments have usually been used to attack other cancers, “in the 1940s and 1950s,” Claus said, “kids were sometimes treated with radiation for all kinds of things, even ringworm, and those kids have a ten-fold increased chance of developing a meningioma.”  

A more common source of radiation may also spark meningiomas.

A study by Claus in the April issue of Cancer linked the tumors to dental x-rays. “Over a lifetime, cases were more than twice as likely as controls…to report having ever had a bitewing examination.”

Claus and her co-authors stressed that the elevated risk primarily resulted from X-ray exams “performed in the past, when radiation exposure was greater than in the current era.”

Studies of cell phone radiation have shown that use of the devices presents no increased risk of meningioma.

The fact that meningiomas are more than twice as common in women as in men, and that they have hormone receptors on their cells, may indicate that estrogen levels or progesterone exposures may also be involved with the tumors’ development. There’s a family association, too, so genetic heritage may play a role. 

The danger of meningiomas usually comes from the neural structures they can affect, often by pressing on neurons as the tumors grow. “Basically it is size and symptoms,” Claus explained. “The larger it is, the more likely to cause problems. It can actually be wrapped around the eye and you can lose vision. You can lose speech, and on down the list.” Meningiomas can affect one’s sense of smell, equilibrium, and physical strength.

Meningiomas are treated, or not, depending on how fast growing they are and what structures, if any, they are affecting. About half of people diagnosed with one require no treatment. Often, Mayberg explained, the tumor simply stops growing. Nobody knows why. When treatment is required, doctors typically opt for surgical removal, or radiation therapy to shrink the tumor.

According to Mayberg, the risk of recurrence depends on a patient’s age – the longer one lives the greater chance you’ll live long enough to have a regrowth – and how much of the original tumor was removed. If any tumor remains after surgery, the risk of recurrence is more than 20 percent."

Brian Alexander ( is co-author, with Larry Young PhD., of "The Chemistry Between Us: Love Sex and the Science of Attraction," (  to be published Sept. 13.

Sunday, 3 June 2012

Dental X-rays - friend or foe?

A recent study suggests a relationship between dental xrays and the development of meningioma.

Dental x-rays linked to common brain tumour

By Andrew M. Seaman
NEW YORK | Tue Apr 10, 2012 7:48am EDT

(Reuters Health) - A new study suggests people who had certain kinds of dental X-rays in the past may be at an increased risk for meningioma, the most commonly diagnosed brain tumor in the U.S.

The findings cannot prove that radiation from the imaging caused the tumors, and the results are based on people who were likely exposed to higher levels of radiation during dental X-rays than most are today.

"It's likely that the exposure association we're seeing here is past exposure, and past exposure levels were much higher," said Dr. Elizabeth Claus, the study's lead author and a professor at the Yale School of Medicine in New Haven, Connecticut.

Claus and her colleagues write in the journal Cancer that dental X-rays are the most common source of exposure to ionizing radiation -- which has been linked to meningiomas in the past -- but most research on the connection is based on people who were exposed to atomic bombs or received radiation therapy

There have been some studies that looked at dental X-rays, but they were from years ago and included fewer people than the current study, Claus noted. Still, they were generally in agreement with the new findings.

For her study, Claus' team recruited 1,433 people diagnosed with intracranial meningioma -- a tumor that forms in the tissues lining the brain -- between May 2006 and April 2011. All of the participants were diagnosed when they were between 20 and 79 years old and they were all from Connecticut, Massachusetts, North Carolina or the Houston or San Francisco Bay areas.

For comparison, the researchers also followed 1,350 people who were similar in age, sex and state of residence as the study group, but who had not been diagnosed with a tumor.

The study looked at how often people had three different types of dental X-rays. They included a focused image of one area, a number of images of the full mouth and a single panoramic view of the entire mouth. These are known in dentistry parlance as bitewing, full-mouth and panorex films, respectively.

Each person was interviewed by someone trained to administer a questionnaire that asked about demographic details, family history of cancer, pregnancy and medical history. The interviewers also asked -- among other things -- about the person's history of dental work and the number of times they had the three types of dental x-rays taken throughout their life.

The researchers found that those diagnosed with meningiomas were more than twice as likely as the comparison group to report ever having had bitewing images taken.

And regardless of the age when the bitewings were taken, those who had them yearly or more frequently were at between 40 percent and 90 percent higher risk at all ages to be diagnosed with a brain tumor.

To put that in perspective, Dr. Paul Pharoah, a cancer researcher at the University of Cambridge said in a statement the results would mean an increase in lifetime risk of intracranial meningioma in the U.K. from 15 out of every 10,000 people to 22 in 10,000 people.

Panoramic X-rays taken at a young age, especially if done yearly or more often before age 10, also raised the risk of meningiomas by up to five times.

There was no association between full-mouth X-rays and the tumors, although the authors note they saw a trend similar to that seen for the bitewing X-rays.

The lack of association with full-mouth X-rays led one expert to question the connection.

"They found a small risk (from) a pair of bitewings, but not a full mouth series, which is multiple bitewings. That inconsistency is impossible to understand to me," said Dr. Alan Lurie, president of the American Academy of Oral and Maxillofacial Radiology.

Lurie also echoed Claus' caution that radiation levels from dental X-rays when some of the participants were younger was much greater than is used now.

He does warn, however, patients shouldn't assume it's fine for the dentist to take X-rays.

"They should ask why are (dentists) taking this image and what is the benefit to me," he said.

The American Dental Association put out a statement in response to the study noting that the interviews relied on participants' memories of how often they had different types of X-rays years earlier.

The statement added, "The ADA's long-standing position is that dentists should order dental X-rays for patients only when necessary for diagnosis and treatment. Since 1989, the ADA has published recommendations to help dentists ensure that radiation exposure is as low as reasonably achievable."

Dr. Sanjay Mallya, an assistant professor the UCLA School of Dentistry in Los Angeles, said that patients should be concerned whenever they are exposed to radiation, but "it's important to emphasize that this concern should not mean that we shouldn't get X-rays at all."

According to the researchers, "while dental X-rays are an important tool in well selected patients, efforts to moderate exposure to (ionizing radiation) to the head is likely to be of benefit to patients and health care providers alike."

SOURCE: Cancer, online April 10, 2012

I know that I had a lot of 'drill and fill' as a child but certainly cannot remember if I had dental x-rays or, if I did, which type of x-ray they were or how many. I have had quite a number as an adult though.

It is known that there is an increased risk of tumour development following radiotherapy to the brain itself or to head/neck tumours, as there is with over-exposure to gamma rays in industrial radiography or nuclear fall-out.

I suppose the lesson is for everyone, - dentists, doctors and patients, to be more aware and to keep exposure to an absolute minimum.


Wednesday, 9 May 2012

Passing on helpful brain tumour information

I know that people are visiting this blog daily and am sure that some of these will have brain tumours of their own, or know someone close to them who has. 

This post is just to say that I found the following video very helpful and informative, and cannot recommend it highly enough. 

It a presentation from the "Diagnosis Brain Tumor: You Are Not Alone IV" conference at JFK Medical Center, Edison New Jersey on 10/29/2011.

Tuesday, 1 May 2012

the benefit of counsel

I'll own up to the fact that I've been seeing a counsellor on and off for the past five months or so. This is the second time I've seen someone since diagnosis. 

The first sessions were just after completion of the radiotherapy in 2009. At that time I was a bit of an emotional wreck and my consultant referred me to the counselling service. I had four sessions but found travelling in and out of the city not that simple as I was not allowed to drive at that time, and I didn't want to inconvenience family or friends. None of them minded driving me in and out but I did not like to keep asking it of them.   

In any case I felt that I could get by without any help ......... not so as it turns out!!! This year, having started me on a low dose of Prozac for mild depression, my lady GP suggested that I give counselling another try and so I have been. One of the benefits as far as I am concerned is that I can say what I'm really feeling and thinking ....... no need to put on a brave face or tailor my responses to suit the person I am talking to. I don't want my nearest and dearest to have to deal with my tears, or to be constantly reminded of my symptoms, real and imagined!! 

A counsellor is there to hear what you have to say and can help you get your thoughts and feelings into some sort of rational order. For example, when I found out in February that I had a second meningioma (which had shown up on my first MRI in 2009), that had not been reported until now, I was angry and disappointmented. I really felt badly let down. Being able to talk to my counsellor about these feelings has helped me to recognise that having two meningiomas is not a death sentence and, in any case, BOTH will be carefully watched for signs of change from now on.

Laying out your anxieties in the cold light of day and identifying what it is that really worries or annoys you is abundantly helpful. As is identifying the things that comfort or console you. Once identified you can use this self-knowledge in constructive ways. In the "busy-ness" of daily living it is often difficult to do this by yourself - an inability to see the wood for the trees! So far the 'the benefit of counsel' has much to recommend it.  

Wednesday, 25 April 2012

golden day

Last month we celebrated our Golden Wedding by asking family and friends around for a buffet style meal with plenty of wine! It was a very happy occasion and I think enjoyed by all ..... certainly enjoyed by us!!!

24th March 1963 - 2012.

wed as teenagers in spring,
some good times and some bad, but
loved for fifty years 

Thursday, 12 April 2012

Still bowling along ....

summer brings lawn bowls 
- a sport we both love, and good
for mind and body 

Friday, 23 March 2012

cat haiku complete!

my cats sun themselves -
who would guess the comfort of
them kissing my face

small rodents as gifts
claws sharpened on the door mat
a small price to pay

Thursday, 22 March 2012


In a recent blog entry on "A Screw Loose" Liz Holzemer suggests trying to write a meningioma-related 'haiku'. 

A haiku is a poem structured as a 5 syllable line followed by a 7 syllable line and ending with another 5 syllable line. I left my first attempt at writing one as a comment to Liz's post;

Nothing stays the same
Our wishes may not come true
But keep hope alive

Then I read a little more about traditional Japanese haiku poetry and realised what a poor attempt mine was!!! I think this one is perhaps a tiny bit closer to how it should be:

autumn approaches -
and waiting here I wonder 
what next year might hold

This one is probably none too good either, but its quite a nice exercise!

my cats sun themselves -
who would guess the comfort of
them kissing my face

Sunday, 18 March 2012

Wearing of the Green!!!

Been a bit bad about writing my blog - mostly because I'm not very motivated to exercise my brain! Feckit and Fuss are far happier if I don't think too much. Things are quieter that way!

And it seems like we've had a busy time lately ... golf (him), bowls (both) and visits/visitors! Last week I played in a ladies lawn bowls tournament at Fairfield, Dunedin - the Annual St Patrick's Day Ladies Progressive Fours. T'was a real fun day altogether, so t'was! Lots of Green everywhere ... including some of the cakes! Players are encouraged to dress up for the occasion and I so thought "Why not make an eedjit of myself?"

Wednesday, 15 February 2012

Researching meningiomas (like Feckit and Fuss)

I have just re-acquainted myself with the online forum Meningioma Mommas, and while I don't go much on the name (!) I do very much admire the group, the brainchild of Liz Holzemer , herself a survivor of a huge meningioma. 

Not only does the MM forum provide support and "chat space" for victims and their families it is also active in raising money towards Research into meningioma at the famous John Hopkins Hospital. So far the Mommas have raised $192,000 (USD) towards their goal of ONE MILLION

It is easy to make a donation via PayPal or post should you feel so inclined.

Now that I know of the second tumour I feel it too should have a name and have decided to call this one Fuss. Feckit and Fuss .... has a nice ring to it I feel!!