Brain Tumour Survivor

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 Post subject: a little story
PostPosted: Mon Aug 30, 2010 11:20 pm 
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Joined: Sun Aug 29, 2010 11:29 pm
Posts: 2
...there was an Aussie bloke named Kevin.

I used to work some big hours in a stressful job until one day I momentarily saw two complete pictures of everything. Only lasted for 30 seconds but it was strange. Life continued as per normal for about 6 weeks and then it happened again at regular intervals over a couple of weeks.

So I went to see my Doctor, Doctor refers me to an Ophthalmologist, a Professor of the craft actually. The prof orders a CT scan to "rule out" any untoward conditions. After a review of the scan there is deemed to be no undesirable signs uncovered there, but a slight ptotsis and diploplia of the left eye are occasionally noticeable.

A referral to an Orthopist is given to map the extent of any deficit. The suggestion that a sinus infection had caused a minor nerve disruption was the issue and that the situation would be monitored. This was deemed to be the most likely physical cause.

The Doctor questioned whether stress and tiredness may add to the condition.

Being relatively intelligent and in my forties I think life is far too short, and if a job could possibly cause a physical problem like this it is not worth it. Chucked that job in and got one more interesting, that does not require so much time or stress and unfortunately with much less pay.

With the extra 20 to 30 hours per week I did not know what to do with myself so got myself a go kart to satisfy my need speed and to experience those days known as weekends and I bought a dog. My family was delighted with the additional time and the new more relaxed Kevin.

Life is good, the eye condition had seemingly stabilised and the prof say come back in a year.

At the 10 month mark the eye condition gets markedly worse, it is December and the earliest appointment is the end of Jan.

I ended up at a different Opthamologist who orders a CT scan with contrast, he suggests that as the minimum to locate any possible disorders. That scan showed a tumour 32 x 28 x 31mm located in the cavernous sinus. The tumour interfering with cranial nerves 3, 5 and 6 and surrounding the interior carotid artery.

An appointment is made with a Neurosurgeon, the opinion recieved is that surgery then radiotherapy is required. the risks outlined are a 50% chance of mortality, morbidity will be total palsy of left side of face and an additional 50% chance of other morbidity such as stroke. Suggested recovery time 18 weeks minimum. He suggests a second opinion but there is "no one in Adelaide who would consider doing such a surgery". His final question was when did I think I would like to proceed?

A second opinion and subsequent partial resection occurred in Sydney end of May 09 via endoscopic surgery. 3rd nerve has not recovered so no use of left eye, the nerve apparently saved but damaged as the tumour was "stuck to the nerve like sticky tape".

6 month MRI, no tumour progression. Life is good, the world looks the same to me although it often looks differently at me.

Just prior to 12 month check up I lost the sensation on left side of face. MRI shows tumour progression. Recommendation is total resection sacrificing CN3 and 5? and an internal carotid artery occlusion. The occlusion was attempted 2 weeks ago but was reversed due to lack of systolic pressure on the brain side of the occlusion.

The Meningioma previously graded "typical" is now classed as "Atypical".

The choices are now narrowing for me. the radiation route is particularly unattractive due to the skull base location and the likelihood of further damage to the surrounding critical structures and the fact that if further surgery might be required in the future the chances of any success after radiation is minimal.

There is a drug outlawed for general use in Australia, but can apparently be imported under permit from the TGA that has shown massive potential for Meningiomas. Funnily enough it was outlawed by the 'right to Life' people because one of its uses is clinical abortion. The drug is called Mifipristone.

Am currently investigating whether there are any authorised prescribers via my doctor but he seems out of his comfort zone a bit (although is putting up a valiant effort). Am going to see a local Neurosurgeon here tomorrow (have since found 3 others here who perform the surgery here) for another opinion and to see whether someone in that field can shed any light on other alternatives.

The other option, although it scares the socks off me is the new "Gammaknife" in Sydney. Of the radiation treatments it seems to be the sort with the least detrimental effect.

Have only read a couple of random posts on this site after I found it and was heartened to see a positive outlook. I am sure that I will find a mine of information here when I have a good read over the coming weekend..

Posting something on a website, let alone something about me is something I have not done before, brain tumours give you new experiences, that can't be all bad....

 Post subject:
PostPosted: Tue Aug 31, 2010 9:40 am 
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Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Welcome to the site!

There are a couple of people who post regularly on this site who have Meningiomas, so they may have some specific information which you find helpful.

You seem like many who use this site who sought second opinions when required and are exploring all treatment options.

While there are a few very good people in this country we do not have the latest treatments available here. If you have a spare couple of hundred thousand then it may be an option to look further afield, if you can travel.

It surprises me now that some low tech solutions are not part of the standard medical intervention. One example is heat. Cancer cells have a lower temperature tolerance than normal cells. So if the cancer cells can be heated before any thought is given to radiation, then radiation could be given at lower dosages or saved.

You are right about the new experiences - both good and bad. I believe that you will find alot of useful information in the research section, as well as having the opportunity to share your experiences.

 Post subject:
PostPosted: Wed Sep 01, 2010 9:22 am 
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Joined: Mon Aug 17, 2009 12:43 pm
Posts: 140
Location: Sydney, Australia
HI Kevin,

Welcome to the club no one wants to belong to.

Posting something on a website, let alone something about me is something I have not done before, brain tumours give you new experiences, that can't be all bad...

I've found myself having new experiences as well. Just over a year ago I would have laughed at the idea of meditating, and now I do every morning day - so maybe you're right, it can't be all bad.

 Post subject:
PostPosted: Wed Sep 01, 2010 10:44 pm 
Registered User

Joined: Sun Aug 29, 2010 11:29 pm
Posts: 2
Thanks for the welcome.

I happened on this site inadvertantly, as a "net pleb" I didn't realise there was so many different things on it and was suprised to find this.

I just noticed there were different headings and realise now I probably posted under the incorrect category, my apologies.

Thanks for the heads up regarding the research section, will have a concerted look over the week end.

I have only just begun to realise that perspective is indeed a wonderous thing. I, like you would have previously laughed at meditation. It is now one of my current research topics. During the most recent procedure I was fully awake and could see the monitoring equipment. I was shocked at my blood pressure and heart rate. I found that if I coud "remove myself" (not sure how else to describe it) I could get my heart rate down to high 40 beats a minute and BP to 125/80.

I figure if I can do that then what could consistent practice do?

Stay well

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