Wednesday, March 19, 2014

Successful "Inoperable" Surgery: Nicola!

I was 14yo when I first discovered I had an inoperable cavernoma in the thalamus in the middle of my brain.   At that age I was relieved it was inoperable as I had no symptoms at all and I did not want anyone opening my head and going into my brain. So if I had no symptoms how was it discovered? Well both my Mum and Aunt had cavernoma's removed a year apart from each other so the hospital guessed these things could be genetic and asked would I mind being scanned, and I agreed so that's how it was discovered. Thankfully for me, no long drawn out misdiagnoses. This was 17 years ago before any genetic links had been confirmed. So I lived with it, I knew to be a 
bit more cautions of things, like roller coasters, stressful situations, contact sports or banging my head but it really didn't effect me apart from the occasional migraine but I was told time and again the Cavernoma was not causing the migraine so I carried on like any other 14 year old with school and my exams. 

Three years later at 17 yo I had my first bleed, by this stage the hospital discovered the KRIT 1 gene and assumed we had that. (We have since had gene testing confirming we carry the CCM1 gene). My first bleed was a small bleed that slightly effected my vision I was left with a quadrantanopia which is a loss of the left lower peripheral vision in both eyes so I was therefore not allowed to drive as this is the area pedestrians step off the kerb. Because of this bleed I had to see my Mum's surgeon who still said it was inoperable and best left alone. Again I was happy with this because I recovered from the bleed and was back at college within weeks although the vision never returned, and I was never allowed to drive something I just accepted and adjusted to . My next bleed was another 3 years later and again was fairly small I spent a few nights in hospital and had a small amount of weakness in my left ankle but this was gone within 3 weeks again so I was happy to just carry on with the watch and wait treatment.

I was working for a small busy ad agency 2 years later when I have a slightly bigger bleed which made me fall down the stairs on my commute home from work. I had numbness in my left hand, and the leg weakness was back and a lot weaker this time, It took me about 3 months to recover and get back to work from this one so I was still fairly happy with inoperable I really did not want anyone going inside my head and strongly believed they never would as it was inoperable after all. So back to work and back on with my life, and apart from these bleeds inbetween them my life was completely normal I really didn't think of myself as ill and no-one apart from close friends and family knew anything about what was going on in my head. I even moved to Spain for 6 months I was that confident in my health. 

Four years on my partner and myself took ourselves off to Australia for work. Armed with my hospital letters and a blessing from my neurologist who advised me Australia have great neurological knowledge. I really didn't care or think I needed to. But 8 months into our year I found myself having a contrast scan in an Australian hospital with my family the other side of the world this was so scary being so far away, waiting for the Dr's to contact my neurologist in the UK.  I had had another bleed, and the left sided weakness had returned but again I seemed to bounce back and within a month we were exploring in Tasmania then heading to Thailand and home. I really was determined not to let this stop me from doing anything.  As soon as we got back to England I went to see my neurologist to give him the letters from the Australian hospital. So I am up to bleed number 4 with vision loss and can't wear high heel shoes as the left ankle weakness is becoming permanent by now, but my cavernoma is still inoperable. This is now starting to annoy me, and my thoughts are turning more towards trying to find a treatment. I would like it gone so I can carry on with my life without these hospital stays but no chance its inoperable so it has to stay put, and I just have to adjust my life to these bleeds. So that's what I did again. 

Bleed number 5, just 3 years later shook my whole world, I had a busy high stress job, lots of friends, a brilliant social life, but my Dr's all said carry on as normal so I did. We were trying to rebuild our lives after our trip away and get permanent jobs and a mortgage and just boring grown up stuff, I had lost my job, my partner couldn't get a permanent job and everything was incredibly stressful when I noticed at my pilates class I couldn't do any of the moves that I could normally. I didn't feel to concerned as tiredness brings out my symptoms, and I was under lots of stress. I remember I  had a spa day brought for me as a Christmas present so I booked that and thought relax for a day and it will be fine but that night I could not hold my fork in my left hand at dinner I still  thought a good nights sleep would fix it tiredness always brings out my symptoms. When I woke up the next morning my face had dropped on one side, and I could not move my left arm or hand at all and I was dragging my left leg. My local A an E sent me straight to the neurological hospital in London, and I felt for sure this would be the time they finally operate, this is the most severe symptoms so far and I was terrified I would never walk or move my left arm again.I saw a new surgeon on this hospital stay, and she was adamant it was still inoperable. I could not get my head around it at all five bleeds, a full stroke, 6 weeks inpatient rehab and all I could do was watch and wait for the next stroke. This seems an important time to mention that Health care is slightly different in the UK. It might seem strange to some, but we don't tend to seek second opinions due to the NHS we just listen to what we are told and trust the Dr's. Although we can look for second opinions with NHS choices lots of people are not aware of this, but I would urge anyone who is unhappy with their care to do so. But it never occurred to me because I am lucky enough to be under the treatment of one of the best neurological hospitals in our country, they saved my Mum and Aunts life after all,  so I had faith in what they said even though I didn't like it. By now though I was scared of more strokes and how much worse they could get if I was left to have another 5 bleeds. This bleed left me in the hospital for 8 weeks in total as I was admitted to the neuro rehab ward to get my arm, leg and face working again, and they were brilliant they helped me get lots of movement back it was the hardest yet most rewarding and amazing things I have ever been through, despite hospital food and beds for 8 weeks. 

After  inpatient rehab I finally went home to my own bed and started community rehab which is a local rehab center who would pick me up and work with me an hour each day. I worked hard with them for 6 months I had physiotherapy, occupational therapy, psychology and cognitive behavioral therapy because I was suffering depression, anxiety and panic attacks. My therapist said she was not surprised at all, and I deserved to feel a little sad for my self after everything I had been through. It was at this stage I discovered Cavernoma Alliance UK and discovered actually I was not alone, and there are many others going through this. What an amazing find I learned so much more about my condition from talking to others who had cavernomas. I turned 30 that year and could not believe my life I was unemployed, lived with my boyfriends parents, didn't yet own our own home,  had suffered 5 strokes, could not drive, and it all seemed so unfair. The therapy picked me back up, helped me to get through the depression and anxiety and to get better and come to terms with everything. I thought to myself right well this little monster in my brain (Freddie) is going nowhere so I need to at least keep him happy, so no more stressful job, I gave my diet an overhaul and went completely healthy, no alcohol and just a really nice chilled out lifestyle no more worrying or stress. Helped along with the coping mechanisms I had learned from CBT. I decided to sign up to a course and train to be a nail technician follow a new and different dream, I was busy designing flyers, finding premises to work from, practicing and thinking of ways to find and keep clients I was so excited I really believed maybe that big bleed was 1 last finale. 

Nicola set up a fundraiser for
Cavernoma Alliance of UK
and donated all of her hair a few weeks
before surgery! Gorgeous! 
But no just 7 days into my course less than a year since my last bleed I woke up one morning with a killer headache, the only bleed that has ever caused me a headache, weakness in my left arm and my vision on my left seemed to be getting darker and darker until eventually I could see nothing on my left side it was just black. After working so hard in physio to get my left hand working again I was devastated that once again it was not moving and heartbroken at the thought of going through all the rehab again and having to quit my nail course, my new dream. My trip to the hospital was slightly different this time, my surgeon didn't want to see me until I had some peripheral vision test so I was given lots of morphine for the pain and sent for scans and vision tests which both confirmed a huge bleed, fluid, swelling, and I now had a full hemianopia meaning my vision was gone on the left completely in both eyes. When my surgeon eventually came to see me I got the biggest shock.  They could now operate. I cried so much, but they were tears of relief not fear. With the damage done to my vision a new way in had opened up they were now able to get to my thalamus without the worry of damaging my vision or my left arm and leg function. I was sent home to think about things and try recover from the bleed. And what happened? My vision started to return, I could not believe it, normally good news but would they still operate now with out the new route in? Off I went to discuss the new changes with my surgeon and thankfully she said if I still want to go ahead they would but as long as I was fully informed and aware of all the risks my vision, arm and leg function could be left a lot worse or gone completely. For me it was a scary decision after being told for 17 years its inoperable, if we take it out you will have less life quality, you could end up in a wheelchair I still wanted to weigh everything up. This is the point I felt  incredibly lucky my surgeon saw me so many times while I was making the decision and everytime I was in her office for an hour with all my questions, and I never felt rushed or like I was bothering her or that my questions were stupid. I asked her if it was her would she have it done and she replied that with all her other patients she could say definitely yes or no but for me  I could 50% regret having surgery but I could 50% regret not having the surgery, but she also said something else that stuck in my mind which was "now is the right time while I still have enough function left to save". To me this meant she must of thought she could do it. After lots and lots of thinking and talking with everybody who would listen I came to the following  conclusion.

Just woke up. 

Whatever happened, whatever deficits I got at least they were the last deficits, it would be the last rehab, the last time my whole life had to stop so I had to say yes. I had my surgery 5th March 2014, and I was told it would be a 6 hour procedure what a horrible wait for my loved ones. I was taken down to theater at 11.30 and when I woke up and asked my partner the time I was so shocked to hear it was 4 o'clock! My surgeon came to see me and told me the procedure was quicker than expected and simpler than expected and only took her 2.5 hours! 

And I had not one single new deficit so even though I was in a lot of pain I could not have been happier. I was home from the hospital just 5 days later.  

Of course I have thought if only they had done it years earlier it could have saved me so much pain and upset but actually my left arm has come out stronger than before I went in, and my vision isn't as dark as it was.

I am having some physio, but it is all to fix stroke damage not surgery damage. My surgeon felt that the amount of time and bleeds had moved my cavernoma into a more accessible place and made it an easier operation so I am glad I waited as long as I did. I just was never ready before, and I think you know yourself when you are ready for that step. My life might of been so different if I had surgery earlier but actually I'm happy with the path its taken me on I might have made some pretty bad decision in my youth if I hadn't been conscious of my health and I definitely would not of quit my stressful job to follow my dream of working for myself as a nail technician and therapist, I'm returning to finish the course at the of the year. So in my opinion inoperable does not mean inoperable. It means finding that perfect surgeon who makes you feel safe, and it means weighing up the risks of surgery against the risks of not having surgery.

Back home Smiling BIG!! 

Nicola at home, recovering one last time!!!! 

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