Our Stories - Jenny
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Jenny - My story - November 2012 (the ‘short’ version)

I was diagnosed with a roughly 4cm x 4cm Right Frontoparietal Falcine Meningioma in August 2011. In hindsight my symptoms had been gradually appearing for possibly 8-10months prior. I was 'tripping', losing strength in my left leg and arm and developing a limp.  I worked out regularly with a personal trainer so a lot of subtle changes were noticeable with regard my strength and control. What was happening to me? I used to be able to do split squats with fairly heavy weights; I was now unable to do them without any weight at all. I eventually couldn't even lie on my back and raise my left leg - it would just flop to the ground. I was losing control of my left side.  I would go to step to the left and nothing would happen - very frustrating and upsetting to say the least. I visited my GP in July once the limp became very obvious and I could no longer deny there was something wrong. At this stage I just thought it was my leg so I had an MRI of my back but it showed nothing so I was referred to a neurologist.  She confirmed that my arm was 'not right 'either, so back for an MRI of my neck and brain. I knew they had 'found something' when the MRI took a lot longer than expected and they pulled me out after 30mins or so to inject contrast and put me back in again. Just as well I was on valium to cope with the claustrophobia of being in the MRI machine! Being the curious person I am, I of course looked at the scans once I was home. Again, just as well I was still under the effects of the valium - you didn't need any medical training to see that the big white blot on the scan was not supposed to be there! I was soon referred to a neurosurgeon and about 10 days later in hospital having a craniotomy. It was a 'rather large' meningioma so I was told. The term 'rather large' seemed to be used along with the word Meningioma constantly.    I think by this point I was just in a calm coping mode. I took it all in my stride. First tears appeared when they shaved bits of my hair to place the electrodes for the Stealth MRI.  But, I had a lot of support from family and friends and went into the operation calmly.  Awaking from the surgery I burst into tears and could not stop thanking my surgeon - I guess I had not been as 'calm' as I thought I was. My recovery went pretty well. I had been warned that things may get worse before they got better, so I was not alarmed that I had no control or feeling at all in my left leg for a while. It came back though and within a week or two I was walking again. The feeling in my leg was a bit hit and miss, but I was assured it would all come back in time. After all, my brain had just been operated on and needed to adjust. I had a couple of seizures in the 2 weeks following surgery - very scary! The first two were the full jerking type, and then I had a few where a strange sensation ran through my left side and I lost feeling/control for a short period of time. My biggest hurdle post operatively was discovering I was allergic to medication I had been placed on. I ended up spending just on a month in hospital mainly due to the allergies. But once that was all sorted I improved very quickly.  I was back with my personal trainer and building up strength again. I was very tired for a few months - fatigue like I have never experienced before. I also was very noise sensitive for a while until my head had healed fully. All was going well really and I was told that there was only a 1% chance of my getting another tumour in the next 10 years. My tumour was totally resected, was grade 1 and benign. Very unlikley to recur. Fantastic! The feeling in my left leg didn't ever seem to improve however, if anything it was getting a little worse. I naively just put that down to my brain doing its thing to repair - and assumed all would be back to normal eventually. I had read of people taking years to recover fully - I assumed that was my case. I went along in August this year for my 12 month MRI check. It was going to be great to see what my brain looked like without the tumour! Took the valium for the claustrophobia. They again took me out after about 20mins to inject contrast- oh… this is not right I don't think that was ordered.  Oh well, not to worry, just being thorough. Again, curious me looked at the scans - I wanted to see my brain, tumour free. There was a very similar looking white spot to last year - just slightly smaller.  In pretty much the same location as last time too. Surely not?? Must be scar tissue??  My head felt like it was going to explode until I could see the neurologist again. Sure enough, I had another tumour, this time it was about 2cm x 2cm x 2cm. What the? I am not supposed to get another one - and don't they usually only grow 1-2mm a year?? How can this one be 2cm already!!!!!!???  it was a totally new tumour. I went into shock. 6 weeks later I had another scan and it had not grown. I was still in shock. I had different treatment options this time surgery or radiosurgery. I visited a radio oncologist to discuss the radiosurgery. I didn't want either. I don't want either. I ran away for an escape holiday on my own to the other side of the country - Broome.  It was the perfect place to reflect.  I have decided to not have surgery of any kind just at the moment and instead just wait and see a little longer. I will have another MRI early in the New Year and see how things are going then.  I am hoping for no growth so that I can stay with my 'wait and see' option for a while longer. - Jenny  

Update February 2013

I am very happy to report that my MRI in January showed no further growth in my tumour!!  So I am staying with my ‘wait and see’ option.  I have an idea as to what may have caused my tumour to grow so fast and then just stop.  Only time will tell if my intuition is right. Another MRI in July - fingers crossed that the tumour remains stable.  - Jenny.

Update March 2014

My July 2013 MRI showed some very slight growth. Only a couple of mm, so I was fairly pleased. All in line with my hunch about hormones  affecting growth. However my next MRI in January 2014 showed more significant growth. The tumour had now grown to 3cm at its widest point. So significantly more than the usual 1 or 2mm in a year. A bit concerning. I am scheduled for my next MRI next month - April 2014. I have been getting frequent headaches lately. Will update soon. - Jenny.

Update June 2014

I made the decision to have surgery and remove the tumour before it grew any larger and started to cause me problems. My surgeon advised the larger it was the more difficult and risky the operation. May 22nd I had the craniotomy and my surgeon is confident it was totally removed! yay!. I am now recovering and working on reconnecting my brain with my foot. Each day I see improvement, 2 1/2 weeks after surgery I can move my leg easily but still have a drop foot. I am confident all will be back to normal very soon though. Lots of physio and exercise to force the reconnections to occur. As I type this I have just come back from a 30min session in the gym (walk, stretch, leg lifts and bike) and I feel great! - Jenny.

Update March 2015

I am still making good progress, though it has slowed. Foot drop still there and lots of balance issues as a result. Also both numbness and hypersenstivity in my left leg and foot. I just call it a confused leg. It doesn’t know if cold, numb or very sensitive. I am determined to not let this beat me. I continue to work out regularly, both on my own and with my personal trainer. I am no longer attending rehab, but I know what i need to do. I believe that my brain can repair and force the connections to improve my leg. I will ignore negativity from any medicos - they don’t know me! I have my next MRI in May - Jenny.

Update March 2016

Not alot of change since this time last year. Foot drop still an issue, and as muscles atrophy and tighten, I need to keep up physio on them to stop toes curling under! But I feel there is slight improvement - so I am still confident of eventual full recovery. I have managed to wean off my anti-seizure medication - that has made a huge difference to my mental clarity. No tumour regrowth last MRI, next MRI in May this year. - Jenny.