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.

Can't take much more!!

I literally am at the end of my patience! I can't cope with the endless waiting, alongside the lack of help for my ON as well as this new pain around my battery site. 

This new pain has been much worse the last 3 days, and randomly causes sharp, stabbing pain lower down in my abdomen and sometimes is tender to touch. If clothes brush over this area it feels 'odd'. I can't explain the feeling properly but it just feels different, more sensitive I guess.

I don't know how to manage all this!!

I have also developed a hacking cough and this is causing my stomach muscles to work a lot and much more often than usual, this definitely causes some of the battery site pain, as I can feel it when I've been coughing. 

This, again, doesn't help.

I feel lost. Like it's all hopeless. I'm waiting patiently but it's going on too long. Even when I finally get to see my consultant next week, I undoubtably will have another wait, for who knows how long! I am going to have to be truly honest about what I feel and what I need. 

An answer would I be a start. And a date of when things can be done!

Here's a photo update of my incision sites and tender battery and wire area.

The wire can clearly be seen as a loop at the base of my ribs. This protrudes more if I twist the top half of my body to the right, whilst the bottom leans left.

This photo clearly shows my abdominal muscles are alongside the battery area, as the battery area is very flat and the rounded dip is the muscle that pushes on it. I am also sure that when I sit down the battery is pushed over my hip bone and the sticks out. I can feel lumpy tissue thy has grown into the battery at this point and it is uncomfortable. 

Here is the awful and still tender scar on my chest. It is very red and lumpy and itches and often has a 'spiky' tingly feeling if something brushes on it.

Here you can see the looped extra wire in my neck. This also itches still and is very annoying and in the way. It's very difficult to scratch because of the amount it sticks out.

Here's another view. You can see the very neat scar here but the loop of wire is still clearly visible.

Trying to hold on!

So the same old things continue.

I think the pain I am experiencing in my abdomen is happening more often, yet is very sporadic. I can't make it hurt but it seems to happen most days. Sometimes the stunning pain has literally taken my breath away and often shocks me. Atother  times it constantly feels uncomfortable, almost like a minor stitch feels. 

I am pretty sure it is related my build up of muscle. If it is, it's the transversus abdominus muscle, which is more or less the love handle muscle that meets the six pack area of the central abdominal area. I  can feel that this muscle is very strong and can push behind the battery easily. If I feel the opposite sides muscle, it is used constantly for walking, moving, bending...everything! Therefore it makes sense that is happens so often and also matches with the strength I have gained. I believe that if the battery hadn't moved back in February, then maybe this wouldn't have happened, as I bet that it is in the slightly wrong place.

My head pain has been awful for the past couple of weeks. Everyday has been higher pain levels and I wake up knowing that the pain is there, when mostly I can wake and not realise until I am up and on my feet.

I am using my stim programs a lot, despite the fact that they aren't helping much. I still believe that if I use it when the pain is unbearable (when I don't know what to do with myself) then I am distracted enough for it to calm to a more manageable pain level, although this is still high.

My anxiety and stress levels are still pretty high. I am always on the moderate to severe level on the questionnaire. I believe it is very much work related that has just impacted on my everyday life too. 

To add to this stress, I had an email last Thursday from my Head to say that my role would now change to PPA cover. This was only following an email to say about the new pain I was experiencing and that I was going to stay off work until I saw my consultant at the end of the month. In total, I would be off for 8 weeks! I wasn't consulted about this at all and it turns out that people, including the children and parents, found out before even I did. And it wasn't made clear that this change was for the rest of the academic year, meaning I won't get my class back! Ever!! 

I am obviously devastated about this, even though it may seem this is the best thing for the class. It would have helped to be told personally, even if I couldn't have changed the decision. 

I feel like I am being pushed out of my job! This, of course, is a massive stress to add to how I already felt.

The issues seem overwhelming.

I am now attending a 6 week course on managing long term health conditions the wellbeing services thy are supporting me with my mental health issues. This may help me see things in a different way. I would like to think that I will be able to se work as 'work' not a reflection of me, my intelligence, my achievement, my life or who I am!

I need to find a way to manage my feeling about all of this. It has made me an angry person! A person who sees the worst constantly and is in a constant battle.

My health can't change if I don't make a change. I don't know quite what that is but I've got to do something.

Currently I can't think of that plan until i know the plan to help my ON and added issues from the surgery a year ago. I see my consultant on 27th January, so 8 guess my fate is awaiting that response.

One supportive thing that I have managed to track down in my GP. Although she can't help with my new issues and states that honestly but empathetically. She always understands my problems and listens to them. She cares. And I know that whatever i need from her, that is in her control, I will get and I appreciate that massively.