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!!

Recovery is in sight

It's been a couple of weeks since my last update and I can now see that the odd feelings, pain, uncomfortableness will eventually disappear and I should not notice the incisions, battery and wires in my body at some point.

Things are much more comfortable now generally, although my stomach is still tender and wearing tights or jeans done up all day is too much. At night I often undo them or take tights off.

My neck is still a bit tight and turning fully to the right is pretty stiff. I don't force it too much as I don't want to cause any damage.

My chest incision out often pretty itchy and the muscle there still aches a bit, particularly when I stretch across my body to the left.

Overall thought I am now managing to do little bits of normal things. Although if I go too much, I do feel that my leads inflame the area surrounding it, particularly in my neck and chest and my stomach becomes more tender.

I did go to the gym just for 25 mins the other day. I only did low level exercise, just to get slowly back into doing something. I worked on a low impact program on the stepper and walked an incline on the treadmill. To be honest, that was pretty difficult and I had to rest half way through, after only 5 minutes!

My implant though still seems to be doing very little. My head pain has been getting worse and lasting for days at a time and the programs I can cope with don't appear to help. The other programs are still too pinchy for me to cope with for any length of time. 

I have been battling to try and get hold of someone at the pain clinic to get an appointment to see Mike, my rep, and finally today was told I can meet him next Tuesday. Hopefully we can set up a wider selection of frequencies so that I have a bit more choice! 

We shall see, I guess!

The date is here!!!

So at the hospital I was shown to my room and immediately everything was whirring...people in and out, getting things underway, non stop!

My consultant came in first, and explained a few things, drew marks on my scalp where my worst ON pain is, then on my tummy where the top of my jeans are and the bottom of my ribs. He explained he didn't want to put it too high up, because it would push against my ribs when I bend down. We also asked again why the date was changed...and now it makes much more sense. Apparently the kit needed for the implant hadn't all arrived and also other people having the same op that day all had to be cancelled. Therefore, it could never have been 6th November anyway!!!! Feel better knowing that.

Then the anaesthetist arrives. He talks me through his part and after I mention being sick after general anaesthetic when i had a tonsillectomy, he explains that he will give me some anti sickness drugs as I come round to avoid me being sick.

Then I give my food order, answer a thousand medical questions and am admitted by the nurse. I am secretly very happy when I have to tell her my weight!!! 12 stone 9 sounds good!! 

After all this I think that's it...but then Mike, the rep from St Jude's (the company that provide the stimulator implant) comes in the room. Not only would he be in theatre during the operation to ensure it all works as it should, but he spent at least half an hour showing me and my partner the battery, leads and charging kit!

This really was interesting, although was a lot to take it at this time! 

I was surprised at how rubbery and flexible to lead was and that each little metal square is a separate contact to create frequency from. The battery is really small and light! It made me feel educated and knowledgable enough to know what was going to happen and what everything feels like, as well as looks like!

I wish I had shown something for scale in this photo, but the battery is about the size of a small matchbox but not as thick!

At 2.15pm I am collected to go down to theatre. And so the next chapter begins....

Operation complete

It's all over!!!

I actually made it...finally. The op is done and I now have my stimulator implanted.

I have to say the first day was rough!!!

After coming round in recovery, apparently I was in theatre for about an hour and a half, I was in so much pain from my abdomen! Every breathe was hard and I was moaning in pain. I maxed out the amount of morpheme they could give me (16mg, I think) and eventually it settled and I could cope! But the problem then was that I felt sick. I mentioned this in recovery but as I'd already been in there for 2 hours, I think they just wanted me back upstairs in my room! 

I was glad to see my partner again but being sick hurt sooooo much! I had no sick bowl though, so ended up being sick in a carrier bag, with my boyfriend running around trying to find a nurse to get a bowl! But then I used all of those and my boyfriend had to rinse them out so I could continue being sick. Disgusting!! 

Sadly this continued so I didn't get to eat anything!! 

The anti sickness drug they gave me made me ultra dizzy, which was horrid!

The worst part though was getting up to go to the toilet!! Wow!! I couldn't even stand up straight, so shuffled, bent over like an old woman. Then struggled to sit down on the loo!!

Later on I was made to eat some bread & butter so that I could take ibuprofen. I immediately was sick after going to the toilet. Horrid! 

After an appealing night's sleep (think I only got 2 hours in one chunk) I woke to a different painkiller, oramorph, that seems to work for me! I managed breakfast and so feel a lot more myself. 

Then the St Jude's rep visited to set up my frequency programs.

This was so interesting! It's all working well and the middle of the lead seems to give the best results, which is what would be hoped for. 

I held the wand, which was attached to the control and his PDA so that he could change the intensity and frequencies to find what works best and gives the best coverage. Apparently I seem to prefer high banded frequencies, where the feeling holds for longer and is therefore slower.

I now have 5 frequencies set now, so I can try there over the next 6-8 weeks and see what works and what I like most etc.

This morning, I have also even managed to shower my bottom half, as have dressings everywhere else, and change into pyjamas! 

Feeling a lot better!!