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.

Aaaaaaaaaahhhh!!

I've been experiencing the worst pain I have had for a long time!

It started yesterday afternoon, where I felt extreme pressure on the sides of my head. It felt like someone was pushing down into my head. At times it is unbearable and moving just makes it worse! 

I tried all my usual techniques, of distracting myself with chats, cooking etc but bending/leaning over made the pain far worse and nothing was stopping me feeling the pain! 

Last night's sleep was awful...I slept on and off all night! Probably getting 2 or 3 hours sleep at a time. I know I had moments of lying awake in bed, which is totally unlike me!

I just don't know what to do!! I am truly struggling with this now. 

When the pain lessens, I forget how bad it can be! I almost believe that I must be making it up, which of course is rubbish, but I obviously forget just how bad it can get! 

All computers say "NO"!!!!!!

I've just spoken to my consultant on the phone as he wanted to let me know that despite thinking he could get funding for my stimulator implant operation on NHS, it seems they have changed their minds!! 

He was going to put through a few people, in the same boat as me, as a group approval on NHS but the people who are in charge have now said that this can't be done! Each case has to be seen individually! He said that could mean tgat some won't get the approval! How ridiculous! 

So....the next plan is to go back to my medical insurance and for him to rock the boat a bit! He is going to go more senior than the clinical nurses/doctors that denied my op twice, and explain forcefully that this NEEDS to go ahead! He even knows the name of the person who has had the exact same op, for the same condition, approved by the same company! 

I truly hope this means it will actually get approved! If so, the wait wouldn't be as long as I was now having to think!

I don't really know what to think now....I'm so muddled and all over the place with all this! All I do know is, that if I don't get this approved this time, I may not ever get it done!!! Sounds like the NHS are being stubborn on this operation...and as I'm one of a few, the chances are difficult! I guess because I may have another avenue, he is going to fight that as the more likely option!

Frustrating.

9 more months plus.....

Not the kind of news you want hear, especially when you have been bothering people for over a month to find out how long the waiting list for the stimulator implant might be!! .....9 months plus!!

Crazy!

It also came at the worst time for me to think about the true consequences of that, as it was whilst recovery in hospital from my tonsillectomy that I received the email!!! I couldn't cry at the point...or get angry! My tonsil (or absense of) pain wouldn't allow me! 

I just can't stop thinking about what this means for my life! Well, of course it's going to be on hold for A LOT longer than I anticipated. 

It means that I will now be waiting until the next academic year, so I can't consider changing jobs or roles for September, as I will not be able to say I have had the life changing operation by then!

It means that my hope of thinking I could possibly move on with my life and start doing things everyone else seems to be doing won't now happen til 2015! 

I just can't imagine it! I'm stuck! Stuck where I am for the time being...& that, overall, is not the best place for me!

Life moves on for everyone around me...but I can't! 

At the moment I can't even think what to do in the meantime! I've done everything I possibly can to make my work life manageable! I've fought things I shouldn't have had to, just to make my work easier for me to manage...yet there is no end to this waiting!!!

So, does it mean I'm going to have to have another procedure that is a waste of time and strength, as they never last long, just to see me through!? But then if I do that and my stim op comes through, will they do it....because I won't be able to say that the stil is lowering the pain, if it is being controlled from the previous procedure!!!!

This is so infuriating!!!!! Grrrrrrrrrrr!!!

Starting to struggle...once again!

I honestly kept meaning to write a new post to say that since returning to work after Christmas/New Year holidays, the ON pain seemed to settle down and I was coping well.........
BUT.....
exactly 3 months to the day of the PRFA and muscle injection operation I last had, the pain and dizziness has returned! :(

Before this, I occasionally felt like my shoulder muscles were tight, I had slight dull pain at the back of my head and only dizziness sometimes.
Now, the pain has dramatically risen. I can feel it in my temple area as well as at the back of my head, I have had at least five extreme dizzy spells a day, which last approximately 30 seconds a time. These are both impinging on my everyday life again.

At the moment, I have no idea how long I am going to have to wait for the only operation that I now see having the potential to help me with all this.
I truly hope it is sometime soon, as I need to get out of this cycle of forgetting how bad ON pain can be, people seeing me mostly well and therefore forgetting I am not, to then going downhill again with a HUGE bump!!!