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.

Even more waiting!

After attending what I thought was a consultation appointment with my neurosurgeon, it turns out it was a reprogramming session. Luckily I picked up my remote as u went out the door!!

For the first time ever I was emotional! I held it together but I know my voice was wavering. He went to get Mr Patel to discuss my issues with the battery moving.

When he came in the room, I was slightly less emotional, as I always feel I need to be matter of fact with him. I explained that things have been worse and that I'm now suffering stress/anxiety due to everything in my life. He asked if everything in my life was difficult and not right, and I replied that the only right thing was my boyfriend!! He replied that that was something to reflect upon! I know he's right but at the momen it doesn't feel enough to keep me sane!!

Mr Patel then discussed the questions he'd been asked to respond to by my work, saying that he was, as always, non commital but clear that there is every hope that I will be able to get back to work as normal but that the operation to implant the stimulator was not a 'silver bullet'!!! He said that he explained that it needs a lot of manipulation in order to get the best from it.

This made me feel that he had done what he could to support me in all this.

We then discussed the ON. I said that things had been far worse and that the stim hadn't been much help over the past couple of months. He asked (playing devils advocate) how would I feel if he was to take it all out. I didn't rush to say "no" but I did say that I wouldn't want that as it would hard to get it approved again. He talked about having it moved to over my ribs, which I said I wouldn't want as it would be in the way. He explained that in that case, potentially the best option would be to suture it down in the hope of securing it in place. Then he went on to say that if he was to go in, it might be that he contemplates a change of battery type, to avoid having to operate again. 

He said he'd make an appointment for a couple of months time for me to see him then and discuss all this. 

I don't really see why we have to wait! I'll have the same issues then as I do now, and it just means waiting longer and suffering more!

Mike, from St Jude's, then explained that the new type battery works differently and uses different waves so that the patient didn't feel the 'annoying' tingling feeling. He also went on to say that he might recommend adding a new and different lead as well, as this could allow the frequencies to be lower as the lead isn't a paddle but the contacts go around the whole lead, meaning that only a small percentage is emitted to the main nerve.

I guess at least there is still some hope for this. Having a plan for me is critical, and I did say this. So let's hope they find the right answer soon!

Then I had to go through the reprogramming. He seemed a bit lost as of what to do, but set two new programme that are a replica of my first setting but using higher frequencies, 10hz and 20hz. He then said that after discussing these kinds of issues with a professor who works at a hospital in Queen's Square, they find that 70hz seems to be most useful and that's where they start with every patient. Therefore, he set the same programme but with 70hz.

So 3 new programmes to try out for a little while.  

I'm not really sure how I feel. 

On one hand, I HATE waiting! I'm not coping now so why would waiting help. Also, it's just putting it off.

On the other hand, at least there's a plan. I don't know if it will happen or even if it will help but at least there's something.

So guessing, once again, time will tell. But in the meantime, I've got to somehow manage and get by, and also see how I cope with work! Whoopee!!

Time is running out!!

I have finally cracked....and have had to take the day off work.

The pain has been building and getting worse, particularly over the past week, but now it's pretty constant high level pain with dizziness, whatever I seem to be doing!

My head feels so heavy and just walking makes it pound more. I have found myself having to breathe deeply (like you do when you feel sick) to help me with physical movements. 

I put off getting out of bed this morning because I knew the pain would only be worse.

I have been phoning my consultant's NHS secretary every day this week, but despite leaving a message every time, and emailing, I have had no response. All I want is to know how long I have to wait. Although I'm not sure I will be able to wait too long!