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another soldier

Posted: Fri Jan 24, 2014 3:28 pm
by klast
hi, im a 40yo australian male with a AOIII.
The second great drama of my life started recently after struggling to get an apprenticeship. On the second day of the study part of my course, everything happened and I was taken to hospital by ambulance etc. A week later after being MRIed and finding the tumor, I was flown down to Sydney Prince of Wales hospital in a twin engine cessna for a tumor resection craniotomy(done march 1st 2013). I have two cool scars on my head now, the old questionmark one on the side of my head and a new headband scar across the front top. There has been no progression in any subsequent MRIs, and the genetic pathology of the tumour gives me a doubling of the standard prognosis for the type of tumor I have. My employer has been good and agreed to postpone my job and the apprenticeship till Im better.

The 1st great drama was getting uncontrollable temporal lobe epilepsy. Obtained after having a febrile convulsion at 18months, with lack of oxygen to left hippo-campus, leaving it scarred. At the time the docs wanted to put me on barbiturates, but my parents said no, So I was an uncontrolled epileptic for the first 21 years of my life, formative years and all, on the maximum dose of tegratol. Then the 1st MRI scanners arrived in australia, which could pinpoint what needed to be removed, bam, cured. Except I had memory recall issues and location awarness issues(getting lost easily, unless i went there regularly) These were hippocampal functions. They removed part of my right temporal lobe as well, it was propagating the fits as well. That lobe is also know to have the "god spot", maybe thats why im an agnostic.

After 95% tumor resection, I did 9 months of PCV chemo till my platelets stopped working, then after xmas break started 6.5 weeks of vmat radiotherapy at 1.58Gy. Am at the end of the 3rd week now and hair is falling out. Wasnt very happy when on the first day of radiology treatment, they had planned for the wrong side of my head!! an hour later everything was alright.

My treatment finishes a year to the exact same day I was DX'ed, funny that. Then Brain MRIs with contrast every 3 months for 5 years

I went through the odds to work out what they were for one person to get both my type of epilepsy, and my type of tumour in one person, worked out to be over a million. So I now know myself as, a 'reverse lotto winner'

Re: another soldier

Posted: Sun Jan 26, 2014 5:08 pm
by kenobewan
A positive attitude like yours goes a long way. At least you have a lack of swelling!

Re: another soldier

Posted: Mon Jan 27, 2014 9:58 am
by klast
yeah I lucked out on the cosmic roll of the dice, but I guess someone needs to compensate for all those lotto winners if the universe is a zero sum game.

Been lucky with the swelling, got off the dex nearly straight away after surgery, and havent needed it so far with radiation, I put it down to the space created by tumor resection and temporal lobe removal 20 years ago. Its feels strange to see both black empty cavities on my MRIs. Wife loves calling me a half wit :).

Looking back in hindsight I realise how the neural deficits of the tumor were effecting me, namely planning/sequencing and verbal memory. I have trouble recalling conversations ive just finished having and I get distracted from what im doing and start visually analysing wherever my eyes wander to. This started to become an issue at work about 3 months beforehand. I could see what was wrong straight away, which is what my employers like about me, but I would stand there unable to step through the standard operating procedures.
Plus I used to get weather change migraines, maybe the tumor was acting like a built in barometer bulb.
My immune system has been reset as well, mozzies used to ignore me and now they swarm me, giving me swollen allergic reaction bites.

LGG are now beginning to be considered chronic conditions, in the health industry. Hopefully the US gov can act on it's Cannabinoid patent(Patent No. U.S. 6,630,507 B1) it got in 2003 before its too late.

Re: another soldier

Posted: Mon Sep 15, 2014 11:02 am
by klast

Hello all again, been a while, so I thought I would do an update.

Finished radiation in Feb, and have been improving ever since. Still just on keppra the whole time as well, still no swelling. Only lost some of my hair from the headband scar forwards(where the radiation beams entered), most of it is back now. It first came back soft and curly, but now its normalising.

My last couple of MRIs came back really good, so much so that my NS wants to move me from 3 to 6 month scans, if the next scan is as good. Im only on one medication, keppra, and he agreed to reduce that by a 3rd(1500 to 1000mg a day). I wanted to reduce it due to side effects, and reduce the hammering of my liver, especially after the 15 years of maximum tegratol use, previously in my life.
And to preserve its current state for future necessary medication regimes.

Unfortunately my employer copped out and now I am unemployed.............luckily my income protection insurance covers the mortgage till march 2015 and luckily I changed from Sickness Benefit to tax free DSP.

Currently my symptoms are:
-Inability to concentrate on planning of any sort(conversations, deciding what to eat, where and when to go somewhere, bathroom renovations etc)
-Spitting out logical sentences, swapping the words around sometimes.
Common symptoms for sufferers of FLS, frontal lobe syndrome

Just recently started to have half a dozen small pinpoints of light flick up in the bottom half of my vision in both eyes, they would be gone before realising. GP got worried and said to stop driving and get my blood pressure monitored, but NS said not to worry about it.
Would only happen if I moved my head sharply. Used to see stars all the time straight after surgery, coughing sneezing etc, but they gradually went away halfway through chemo. Was a bit anxious after seeing GP, but the starring has almost gone away again now.

My biggest issue is fatigue. I used to stress about getting a career going to be a proper bread winner, but now id be happy just to get paid to do something simple and repetative, something that avoids my FLS.

Overall my NS has said they'll be able to keep me going till my 60s, appearantly I have "still lots of brain left to work with" in the future

Usually with oligos it is an average of 7 years to reoccurance. And im still looking into alternative therapys. Such as the recent push to get medical MJ trialled here in Australia.
"Research in Spain (the Guzman study) and other countries has discovered that cannabis has tumor-shrinking, anti-carcinogenic, neuroprotective properties. These were confirmed by the 30-year Tashkin population study at UCLA."

Still keeping up the positive attitude as well :)

Take care everyone.
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