The continuous wait......

I haven't updated my blog for a while, because I basically have no idea WHAT is going on!!!
Since the cancellation of my stimulator implant surgery, it has been extremely difficult to get any straight answers from anyone.
All I know is;
* I should get the operation in 2014 at some point
* They still haven't got in contact with the representatives from St Jude's, so can't plan a proposed date, in case it changes.

I realised the other day, that I haven't had any operations to help me through since November 2013!!!
Mainly because I was constantly waiting for the date for the implant and so was working toward a date constantly. That helped me get through the hard times, as I would think I only had X amount of weeks to get through BUT it actually now means that I can't really think about a temporary option as the date for the permanent may come up and I need to know how I am feeling from it, without any pain relief blocking it's benefits.

Honestly, I can't believe I've been left this long within being told anything!!!!!!

In the mean time, I have found that going to the gym and actually working my muscles is helping somewhat. I feel less intense pain, far less often. It's only been a couple of months of going, but am pleased I have found something to help me through this long wait.

Why me...?!

I can't actually believe it!!!

Why do bad things always happen to me!!! The worst thing is I knew something was up but it was out of my control to truly know, or do, anything about it!!

Although today....right now....I should be having the operation I have been waiting years for, it turns out that 5.30pm yesterday was when I was told there had been a mix up at the hospital!

It seems that because the NHS approved the funding for the stimulator implant at the same time that we were trying to get it approved by BUPA (who decided I had to have another radio frequency procedure before they would approve the stimulator) ...then my consultant and his PA have got confused. They were planning different operations; Mr Patel thought we were doing the PRF but his PA thought we were using the NHS funding to go ahead with the stimulator. It appears that they didn't realise they were thinking different things until late yesterday!! Great, thanks so much!!

Anyway, I have refused to go into today for the PFR as it is a complete waste of time and just holding off the inevitable. It was offered that I could go in today for the PFR and then in a few weeks time plan a date for the stimulator.....WHAT'S THE POINT???!!!!!! I just want the stimulator!

So, my consultant's PA said that after my phone call with Mr Patel today, we will try and sort a new date for the stimulator within the next two weeks. 

I guess we will see about that! With my luck, I bet that's not the case!! 

After thinking about this situation, it seems rather odd to me! 

I was in constant contact with Mr Patel's PA. After sending in all those questions, she said he had my case file and she would get it back and send on the answers. Surely, he would have realised something was up after me asking those questions. My emails were titled 'stimulator implant' and as we had NHS funding, why put it off!? As Mr Patel knew my feelings about having to repeat the PFR, and apparently he agreed, then why would we go forward with that!!!??? 

Maybe, they made an error and hadn't done things that should have been done and so are covering up for that!

I've had no paperwork, for PFR or stimulator, so it just seems odd. 

I knew something was wrong when I didn't get anything in the post, or have a pre op etc....but still, I got my hopes up, I planned everything, I organised things at work, explained my op to my class of 7-8 year olds. 

I don't know where it all goes from here!! 

I guess I'll see what happens from this phone call today!! That is, if I actually get the phone call!! 

Update: 

So, it is now past 8pm and what a surprise.....no phone calls all day!

Obviously I am of very little importance and my health and future means nothing!!!

How special do I feel right now!!! 😞 

Update #2:

After having to wait ALL weekend to be able to hear something from the hospital, I phoned this morning to find out thatmy consultant's PA was not at work today! I spoke to someone else about the situation, who assured me that she would see what she could do and call me back in the afternoon.

Surprise, surprise, I've heard nothing! I tried calling but no one would answer! Honestly.....I have no idea what to do, or how to cope with this anymore!!!!!!

😩😠😟

Is it really going to happen!??

There's only 4 days until 6th June 'Cyborg Day' but I still haven't got any paperwork confirming the op OR the answers back to all of my questions.

Craziness!!

It's starting to stress me out....am I actually getting my operation!?

Now, to make sure my class of 7-8 year olds understand!

So, I have been hunting on the Internet for a video that would explain my operation easily for children to understand. I am a primary school teacher and have never kept any of my operations secret from my year 3 class, but I really want them to understand this one. I feel it's important, not only for them to understand what is going to happen to me and why I will be off work, but also so that they gain knowledge of medical advances, perhaps for their future or to interest them for future careers. You never know, I could been teaching a neurosurgeon to be!!

So....this is the best I have found....

http://youtu.be/0fvROhjZ9U4

It's simple and in cartoon, so hopefully not too "disgusting".

I'll let you know soon what they think!! 

Update: 5th June 2014

I spoke to my class about my operation and showed the video today, and their reaction was full of interest. 

Most watched the video all the way through and despite a few 'urgh's, they were really interested in how this worked. 

They asked really sensible questions about how do you change the battery.

Overall, I'm glad I showed them. 

I overheard one child explain it pretty clearly I her mum, despite saying I had "nerd damage"!!! ☺️

A few even wanted me to write down the link so they could show their parents. Bless them.

That's at least few people, in the next generation, who now have a bit of knowledge about this terrible and little understood condition. 

Count down to becoming a 'cyborg'

So...it has been officially confirmed that my stimulator operation will be 6th June 2014. 

We are going with NHS funding as BUPA haven't backed down in their idea of having another PRF procedure first. To be honest, that's fine with me. At least with NHS I will be under their system, and if circumstances change at least I will be held under the NHS for any revision surgeries etc in the future. All that matters is that I get the operation done and by Mr Patel. 

So it's count down time now!

Less than 2 weeks to go and it's about the only thing I can think about. I know I need this op, but it's taken me a while to get my head around it. Some people who totally get me, have mentioned things like how I will realise just how much effort getting up and getting into work used to take after I get this done. I guess that's true, and there is no other option for me.

I have soooo many questions though, partly because I'm a control freak and need to know everything. My consultant's PA has said I can email by it's if questions for Mr Patel to answer. This is what I've got so far;

* How long will I need off work? 

* What is the full recovery time?

* What will recovery be like?

* Will I need to stay overnight in hospital?

* Do I have a choice where the battery is placed? (I'd prefer behind me in lower back area)

* Will my hair need to be shaved?

* What are the possible complications?

* Is it a lot like pacemaker surgery?

* How long is the actual operation?

* What will I need to be aware of in terms of airport security etc after the surgery?

* What will I expect in terms of follow up appointments?

* Will the stimulator stop all my pain, or just the sharp pain & dizziness?

I will update with the answers when I get them.

It's all a bit real now. 

Not sure how I feel at the moment, but I think it's anxiety/panic/excitement!! 

All I know is I'm getting a few nick names already!! My brothers have said that it will be cool for me to be a "Cyborg"!! 

Makes me smile, at least!!!! 

More good news!

Well....it appears that I have been given a date for the neurostimulator operation now.....6th June.....!!

No paperwork to prove it yet, but have been told that that date won't change. 

Excited but a bit scared/anxious now!

I just hope it lives up to what I hope it will be!!

Apparently the NHS will allow that date, as I've been on the waiting list since October, and as you have to have a date with about 8 months, then that's perfect! They still want to see if the medical insurance will approve it, as apparently that will be easier in terms of paperwork and getting things signed off. At the moment though, as the insurance has now changed over to BUPA, they are stating they want me to have one more PFR, the same as the last two, before they will consider the neurostim! For me, that is ridiculous and just a waste of time! But if I get it done through NHS, I am happy, as at least it will be easier if things change to get revisions to the stim etc, if needed, at a later date.

Guess we just see now....but either way, who cares...as I'm getting it done no matter what happens!!!!

Phew!!!.............maybe!?

For once, I might have just been given some good news! 

Although I won't quite believe it until I actually have a date and the information through the post........BUT I have just spoken to my consultant's PA (strangely, on a day off work cos my head pain is so bad) but she has given me 2 gems of hope!
1. AXA have asked my consultant for an extra report to state why I am in need if the per nan stimulator and to explain this in reference to the NICE guidelines.
* Well, they have never asked for that before, so it sounds hopeful. We shall just have to wait until the end of the week to see what happens there.
2. I didn't realise that I've been on the NHS waiting list for sometime, and apparently they have approved the funding!!!!
* NO WAY....I thought that was a no hope. I was adamant that there wouldn't be funding for it, well at least it would be my luck that it wouldn't be for me!

So, it seems either way, I can get it done!
If it's approved by AXA it could be in as little time as 3 weeks, if NHS it's only 4-8 weeks wait, as I can have it done at Spire, because I have already been seen as a patient there!

So now reality kicks in!
Uh oh....I'm going to have a stimulator implanted in my body! But if it helps this pain, and for me to get my life back, then it's my only option.