Fire Frog'sBrain Tumour Page
First MRI scan results, from 27- August-1997.
FINDINGS - The examination demonstrates a 5mm area of low signal intensity in the left lateral portion of the pituitary gland interposed between the pituitary and the adjacent cavernous carotid artery. This is most consistent with a microadenoma.
Second reading from 22nd March 1999.
FINDING -The left sided low signal intensity area between the anterior pituitary gland and the cavernous carotid artery is less well visualised than the previous examination and has shown no alteration in size.
Ihave a houseguest in my brain. I call her Elizabeth Tumour, after Elizabeth Tudor, the Queen who lost her head (what a wit am I J ) She is about the size of a grain of rice. The problem is that she sits on top of the master gland, the Pituitary, and that is only the size of a pea. Elizabeth causes the most harm by interfering in the Pituitary's regulation of hormone production by other glands, and by inducing inter cranial pressure. That is, when she bleeds, or causes irritation to the surrounding tissues, they compress, and as everything is caught in the immovable cranium (the Scull) then pressure increases all over the brain. Hence migraines, vision distortion and sundry other symptoms.
This is the story of how I found out about Elizabeth. How I nearly went insane, was thought insane (or at least *very* hypochondriac) and eventually stumbled across the answers just in time to save myself from a nervous breakdown. I hope.
*On the 16th of November 2000 I was diagnosed with Intra Cranial Hypertension. This made my visual problems and memory loss much greater than Elizabeth could have done. However, it was not picked up because the symptoms were so similar to what the tumour causes (In fact its alternate name is Pseudotumor Cerebri - a fake tumour!). Only me getting worried about the loss of my sight and a few words of advice from some internet friends gave me the courage to ask for a second opinion. I am glad I did, as left untreated I would eventually have gone blind (still might, oh happy thought...not!)
Warning.There are some frank discussions of things like periods, breast milk, libido etc. If such things upset you, read no further.
To skip the personal story and go strait to the medical stuff,see here.
A CAT scan showed nothing.
If looked at rite i.e. as if it was an inkblot test,
It was a very peculiar feeling. It was like the time I put on my teachers glasses while waiting for him to finish talking with another group of kids. Suddenly, from the back of the class where we were standing, I could see. See it all, the blackboard, the small posters on the wall, everything. It was just like that, being told I had a brain tumour. A revelation.
I can remember being so terribly relieved. It had been a nagging worry at the back of my mind for years. 'Was I going insane? Making things up? Trying to get attention?' You hear of people doing that. How awful, to be insane, and to know it. After all, I had been for medical examinations before, and never come away with a comforting cure or even a reasonable diagnosis. Except - well, maybe I was making it up, over reacting to things that everyone else had, but simply put up with. The problems must all be in me, I was some kind of weak willed milksop that howled and threw her self about over nothing. I am so very glad that wasn't the case.
With the news of what was wrong with me, I began a search into my past. To sort through the things that had puzzled me, to gather the clues that had been there, had anyone known what to look for. Had anyone listened.
I'll try to break things down into groups. Many interlock, over run and coincide with each other, and things could get confusing if I don't. Besides from giving a sufferers experience with the symptoms of a Pituitary tumour, I'm going to try and relay the fear and paranoia I felt as well. So if this gets a little self indulgent, a little whiny, well, that's how I felt at the time. Still do, sometimes!
It all started such a long time ago. I was a reasonably healthy young woman in my earlier twenties. I was blessed with regular periods, one month off, two days on. Then it all went to hell. Cycles shortened and became heavier. All month with no days off became the norm. Sanitary pads are not cheep, nor did they work as well as they should, my clothes and bed linen were becoming permanently stained (pads weren't as reliable back then as they are now.) What the hell was going on? I eventually got up the nerve to tell my doctor and on his advice began to take the pill. Abruptly all the messages from the pituitary gland (the hormone controlling gland) were going out as they had before. Cycles fell back into place, I could go horse riding at that time of the month again if I liked, and no more thought was given as to 'why' my cycle had gone screwy. It was over, I could forget about it.
About this time, I had a very bad scare. Late one night I was reading a book, when suddenly the words made no sense. The letters were jumbled, I couldn't read them. Frightened, I went to see my family, but they didn't know what it was, and advised I just go back to bed and see how I felt in the morning. Reading is one of my greatest pleasures. I was really scared I might be going blind. But we lived out of town and I had no car, and nobody else seemed to be worried, so I went back to bed. Later that night I had the most horrible headache I had ever had. This was my first ever migraine.
From this, the migraines went from strength to strength. I began to see a strange glowing 'crystal' that blocked the middle of my sight, so I couldn't drive, or even use the phone to call somebody. It was followed by a painful headache, and accompanied by intense tiredness. These events were heralded by smaller purple polka dots and an opaque purple flash, as well as a sudden onrush of spoonerism's (saying words mixed up, like 'hook lear' instead of 'look here'.)
Migraines do these things, said my doctor. There appeared to be no trigger (like chocolate, or bananas) and the various drugs we tried, like Imigran and Ergodryl had no discernible effect. As the years passed, they went from once a year events to once a month. By 1998, two of every four working days could be effected by migraine. After the initial onset and odd visuals, the pain could last for two days. As migraines go I have found out, I am damn lucky. I get tired and can sleep through one with no pain, if I go to bed early enough (at disappearing noses timeJ To see what my migraines look like, hop on over here) Lot's of people are worse off. If only I didn't get so many of the little blighters.
Then I began to smell things that weren't there, like baking bread or smoke. The smoke especially effected me, making it impossible to lie down and sleep as my nose blocked up. The smell was so strong I had to gulp for breath through my mouth. I spent many nights wandering the house, looking to make sure there were no fires. Sometimes I would get up and wander the neighbour hood, to make sure nobody was trying to burn down the high school again (they do this, try and burn the high school, about once every two years. I don't know why.)
Nasal epilepsy said the doctor. My family actually laughed when this prognosis was made. I love my family, but some times they could use a good kick. It wasn't funny. What if the house caught on fire, and I thought I was just 'imagining' stuff again? I could die from smoke inhalation before realising something was really happening. Even worse, my cats and fish would be trapped in any house fire with me. I worried about them. Determined not to let them be at risk I went out and brought a top of the line smoke alarm. Best investment, besides the St John Ambulance first aid course I did, that I have ever made.
There was even more stuff going on with my eyes. Myopic (shortsighted) from my father's side of the family, I wear glasses anyway. Now I began to bug my Optometrist for upgrades. Again and again it seemed, I went in only to be told my vision hadn't changed. Go see your Doctor, they said. To get me off their backs they occasionally sold me new glasses with slightly different lenses, but nothing changed. My vision continued to blur, I could see double lines on the out line of things, and I developed a habit of pressing my glasses against my eyes - trying to see better. The edges seemed...shadowy?...un focused? Whatever it was, it was damned annoying. And I kept getting little flickerings at the edge of my vision as well. Could the migraines I was getting be affecting my vision? No, said the Doctor, go see your Optometrist. Hmmm. L
Idon't buy a lot of rings, but I was rapidly out growing the ones I had, something that you weren't supposed to do. The thumb rings especially kept getting too small fast. My fingers were getting thicker. Actually, it was the bones thickening, caused by the same hormone excess that when someone produces enough of it results in Gigantism. (I recently spent the price of buying a ring to have seven rings re-sized. I can once more wear great-grans wedding ring, my pewter frog thumb ring and the ring mum gave me for my 21st. Even the ring I brought with my first paycheck, as an investment, fits again. It felt like a triumph, like a win. Take 'that' Elizabeth. I can wear my seven rings.)
Years passed and one day my left thumb began to ache. Rubbing, flicking and massaging it didn't seem to help. It went away for a year, then came back in both thumbs. The pain had been so unique that first time I remembered it from the year before (a miracle, considering how bad my memory could be) and mentioned it to the doctor. Let's wait and see, he said.
It went away, then came back. Stronger. It now affected my fingertips, making the pointer feel as if it had a castration ring tied round it. One of my jobs was to operate a manual pipette (using a scissors like motion, with a power grip.) It hurt so much to use I would cry and had to change hands regularly. (I kept this a partial secret at work, so they wouldn't fire me. I felt sure they would if they knew. Stress was on the rise, probably of my own making.) It now took two hands to remove a small beaker from the hot plate, and using the splitters became a real chore. My work became slower and the pain spread.
Pain arrived randomly in shoulders, elbows and wrists. It flickered constantly in all parts of my hands and lingered longest in fingertips and thumb joints. It went from sharp stabbing needles to a tingly ache that lasted days. What the hell was it? The hand brace I tried for awhile did no good. The pain was so random I'd have to take painkillers all day to stop it. I needed a cure. I needed a prognosis.
Arthritis? Yes - some of the symptoms fit. No - said the doctor.
Repetitive Motion Disorder? Yes! All I had to do was avoid half the jobs at work... Luckily "No." said the doctor.
Carpal Tunnel Syndrome? YES! That's it! I was so happy to finally find out what it was. The doctor sent me for tests in Perth, Western Australia's big city. No, said the test technician, it's not Carpal Tunnel. "What do you know?" snarled I. Three doctors had said it was! All I had to do now was take painkillers, rest my hands and in due time have the operation to remove the presumed overgrown bone in my wrists. At last, something with a cure!
Just then, mysteriously, the pain went away. Sure, it re-occurred every now and then. But not like it had been. Carpal Tunnel isn't supposed to act like that. Was I making it up? I felt that others must think so. All that fuss with the wrist brace and not lifting heavy objects (but it had hurt!). Depression threatened. I felt guilty for making a fuss, and paranoid that everyone thought I was a fraud. I accused myself viciously for overacting to normal, everyday pain.
Not everything was depressing in my life however. My sister-not-quite-in-law had a baby. I went to a few pre-natal classes with her and was now full bottle and could have had a baby in my sleep, or so I felt. J So in-tune with motherhood was I that when milk appeared at my breast I felt only slightly uneasy. I had heard that aunts and sisters would sometimes do this, they (nurses and researches and such) think it's incase the mother herself couldn't produce enough. A kind of back up milk machine. Sounded cool. I wasn't producing a lot of milk, and awareness of it soon faded to the background.
My sister-not-quite in law is a wonderful person. One strange day I kept being unable to end my sentences, and she leapt in and did it for me. It was spooky how she seemed to know what I was saying. She will still supply the words (when I forgot them) for pen, car or table. If only she was around 24/7! The doctor said getting forgetful was what happens with age. Everyone does it. Forget. Well, up to then, I never had. I could remember knowing all the words in a sentence. It hadn't been that long ago. What was wrong with me? (Senility, Alzheimer's, insanity?)
I actually tried to monitor my memory over a couple of days, and the results shocked me. 20% of the time I couldn't remember the name of an object, or finish the end of a sentence. On bad days that went up to 70%.
I've been forced to be an introvert, when I am anything but. When the ideas are bubbling, or a conversation is going well and I want to join in, but can't, that's when I feel it the most. A focus-less anger and frustration. I want to hit things, tear things apart. Back then I didn't even know why it was happening. I'd try to talk, and out would come a jumbled mess. People would look at me condemning-ly. /She's an idiot/ they thought. (Or I thought that for them). Some times they'd tell me so, or tell someone else in a loud voice so I would over hear them. I hate that. Silence became my only security from ridicule. And I hated silence. Still do. What's that old saying? 'Everybody is entitled to my opinion.' Yeah.J
*At least some of this memory loss is due not to Elizabeth but to Dingo (the Intra Cranial Hypertension I mentioned up top).
Eventually, after two years of occasional re-occurrence, I mentioned the breast milk to my doctor. "Let's wait and see" he said. The doctor is definitely thinking hypochondria; I can see it in his eyes. It is becoming harder to mention these little things. The way I suddenly lose my balance and walk into walls for instance. (Especially bad in shopping centers for some reason.) And all those hot flushes I keep getting. And the beard hair I've found once or twice on my cheeks!
But, I do have one victory to back me up with, to keep me questioning. Overcome with pains in my gut, I saw the doctor. Seasonal effects, mild dietary allergy or passing virus - he dismissed it as. I began noting the timing and severity of the pains in a notebook. A pattern soon emerged, and triumphantly I showed it to my doctor. He arranged for specialists to see me, an endoscopy was performed, Irritable Bowel Syndrome diagnosed. Donnatab was prescribed and I had relief at last. With the help of an excellent book by Father Tree Press called 'The Irritable Bowel Syndrome,' the problem was solved. I learnt the importance of keeping records, sticking to my guns, knowing how to relax, and taking little pills. The pains in my gut soon went away. The boost to my confidence, being proved right, was amazing.
Now, however, the migraines, lactation and eye problems were again plaguing me. The lactation left me with embarrassing stains on my shirts, though I did go up a couple of bra sizes. Big boobies was not consolation enough. Especially as I had to purchase a pair of blasted torture devices (I don't actually wear bras, they never fit right, and I simply don't see the point to wearing them unless jogging. I never jog!) I had to get the bras so I could put milk-absorbing pads down the front of them. Exercise and good posture had done me well for years, now the bra's I ended up with could have been used to constrain mass killers, they had more buckles and straps than a straitjacket!
To top it off my period began breaking out of its cycle again, despite taking the pill. My doctor frowned and referred me to a gynaecologist.
So to the gynaecologist went I. The one I had seen before (who had sniffed at the suggestion of a saline warming bath to warm up her instruments with, then snapped "Just relax" when inserting the icicle cold clamp thing) was not there. Thank goodness. She had been unimpressed at my story of breast milk the year before, and chirped that well-known refrain - "Let's wait and see what happens, shall we?"
The new woman, who was only a temp, immediately performed a breast examination (the other one hadn't) and sent me down the corridor for a blood test. It showed higher than normal amounts of prolactin (the female hormone).
Armed with this result, my doctor could refer me to a specialist. He arranged a CAT scan to be done (no result), eye tests done (slight peripheral deficit), balance test done (strait line? What strait line?) and finally an Electro Milogram Imaging scan done.
A tumour the size of a grain of rice was found on the pituitarygland situated deep within my brain, kind of behind the eyes. The relief was immense. Some folks might have found that news of a brain tumour was scary. But I didn't care. Now I knew what it was, I could work on it.
The specialist suggested I begin to take a pill calledBromocriptine. It causes the lining in my nose to swell and a wave of fatigue that lasts about an hour. If I take the pill at night and am asleep before it begins interfering with my breathing, I'm okay.
The curtain call of the symptoms that pointed to
Problems with memory, speech and communication.
Vision problems, such as blurred or double vision.
Thickening of the bones (hands).
Loss of peripheral vision.
Loss of libido.
Production of breast milk in a woman who is not pregnant.
Loss of menstrual cycle, hot flushes, beard hair.
Mock Carpel Tunnel symptoms.
Please note, not all pituitary tumours are the same, and it is possible for different people to have different symptoms. Check out the medical links I have on the other pages to see the differences.
I still get migraines, but at least now the migraine medications do have some effect. (to see what my migraines look like, hop on overhere) My period is back on schedule. I don't walk into walls. I can finish sentences more often than not.
And something I didn't even know about came back online. My libido. When I was a teen, I watched in puzzlement as my friends stopped talking about 'My Little Pony' ™ and started going on about boys. Odd. I still have a very nice 'My Little Pony' ™ collection on top of my fridge, and every now and again, I buy new ones. I never saw the attraction of boys, till now. Thirty-one years old, and I'm hit with the teenage hormonal rush. Suddenly, it's gone from the occasional southern itch, to -"Man, give me a man! Any man!" Disconcerting. Very.
But now I am happily set in my ways, and to be truthful, wouldn't know how to enter the dating game, let alone want to. But it does give me a great perspective on what my friends were going through all those years ago, without the maturity to say, no, that's not what I really want. The feelings are damn strong, and it's scary to think how much our hormones can affect who we are.
Looking back, I can see that at times I have been my own worst enemy. Any disease that vaguely resembled my symptoms, I felt I must have. I was so eager to find some cure that I grasped at anything. After awhile, people must have started to tune me out.
All along, I have felt there was something wrong. But no one wanted to listen, especially as time went on and I allowed myself to believe the hypochondriac tag they stuck on me. Luckily some small part of me still said, 'no, go to the doctor, mention the loss of balance/memory, the blurred vision, increased migraines, hand pain. Keep at it.' And I am glad that I did, because it is a lot nicer to find out about a little tumour than a big one. I think as a result of this I've become a little bit harder on my doctors. A little bit impatient, a little bit pushy. A little bit scared of having the tumour grow again, and them not believing me.
But I haven't thrown rocks through their windows, or burnt the hospital down. (Maybe that's why they try to burn down the high school, frustration). Some days I want to. Because my hands still hurt, some days. And my memory is bad, some days. And it's hard to hope, some days. But I know I could be a lot worse off. And that thought helps. Some days.
But it doesn't matter today. Today, I feel great!
Here is what I have discovered about Pituitary Gland Tumours on the Internet,see here.
Visit another personal page here:http://members.aol.com/tomajestic
Back to Index
Mail Me Quick! firstname.lastname@example.org
PS, this document is being added to. I dragged a lot of the above from out of
my memory diary, Chaos. Now other memories are coming back in dribs and drabs.
I try and put them up as they come.