Saturday, 30 January 2016

Another waiting game

I am feeling a little bit calmer after finally seeing my consultant neurosurgeon at the hospital on Wednesday. It had been a long time coming and I really needed a plan to base the rest of my life decisions around, as sadly this has to come first in all those decisions.
I set out to have a plan and a rough date before I left the appointment, so asked my boyfriend to come along too so that he could battle some of this for me.

So we went in to the room and as always, I was asked how things were. I actually replied that I was struggling, whereas recently I have just grunted to imply things weren't good. 
I explained the new pain issues with my battery area and without looking, he stated that it must be rubbing against my ribs and hip, causing these issues. That this area has a lot of movement and losing weight has changed how it was sitting in the abdomen, meaning it won't be in the same position anymore.
We discussed that the battery needs to be moved and he showed us where the rib area would be and the other choice is in the chest/collarbone area. This will be my choice and I didn't need to decide there and then! Phew!
He said this will be a new battery type, about the same size as the one I have now. He explained again that this will mean I won't feel the stimulation so that other frequencies, that are to strong now, can potentially be used. 

He then asked what was worse, the occipital neuralgia pain or the battery pain. I explained that not being at work helps me control the head pain so at the moment the abdomen pain is more concerning. He mentioned having options of changing battery or also changing the lead. I said to do everything that can or needs to be done to sort all this out. I then asked if it essentially meant taking all this out and starting again and he agreed to that. 
I ensured that I asked when this could be done and apparently Southmead hospital is under constant red alert, so they often don't have enough beds and people's operations get postponed. He knows his waiting list is full up to March and then has annual leave to use up before new tax year, so the earliest date is April. To me that is a long wait feeling like this, but I have no choice.
He then sent me off for immediate X-rays of the whole implant area. I barely had to wait, so was pretty impressed. I was shown through to a little room to change into a gown and this went straight through to the X-ray room. In total I had 5 X-rays of my head, chest, abdomen and pelvis areas. I tried to take a sneaky look at them but only saw the final one they took of my head, straight on view, so that it was clear where the lead was placed. It was so strange to see it in my head! I really wanted to see the abdomen one and wish I had asked. Although this was taken laying down, so it wouldn't have shown how close it is to my ribs or hip, as it is stretched out much more when I'm laying down. 
I'm pretty sure I won't hear anything about the X-ray and that it was for future reference when I eventually get this operation, but at least something was done and it felt more like a REAL plan this time and this helped it to feel that way. 

So I left thinking that meant a new lead and battery in the place if my choice, however my boyfriend saw it as not a change in lead as the new battery would help things to be different. I'm not sure on this, so nearer the time I will need to speak to him to double check the plan if it isn't clear on my following letter. 

Now I need to sort out the stress in my life. Stay calm and be patient.

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