Starting to do 'normal' everyday things once again!

Things are gradually getting back to normal now. 

I managed to do up my trousers for Christmas day for a few hours and it wasn't as bad as I thought to sit down with them done up. They were the jeans that I wore to hospital, so aren't tight around the waist but still, it's a start. 

I went into town today, just for an hour. It was a struggle, as I hadn't realised that I need to walk slow as my legs pull on my stomach if I stretch my legs too far. And it's difficult to turn wearing shoes, as the grip they have on the floor cause extra pressure on my stomach too!

I actually ended up being forced to drive for 5 minutes on Christmas day, as my boyfriend had had a few drinks and had totally forgotten that I hadn't been able to drive. Apart from pulling out of the space and then parking, I managed to steer left handed, so I coped. Not sure I'll be rushing to drive just yet though. The pulling was very uncomfortable!

I also have had a few moments where my chest scar has felt like I was stabbed instantaneously. Today, I even dropped my cutlery because of it, as I was in the middle of dinner.

I have been retrying the other programs in my stimulator but they are still either too powerful and feel too much pressure or they are pinchy and uncomfortable. I can cope with program 4 but only low but then I can't rely feel it. So still, program 3 is basically all I have got. 

I'm not sure to what extent it is helping with my ON pain. I know it is helping with the low level pain at the back of my head and head pain in the front temple area. They are fairly every day levels of pain and the stimulator seems to ensure that I don't feel or notice them pretty quickly. I'm not sure that I've experienced any higher levels of pain to test the stimulator against as of yet! 

The scars are looking pretty good now. 

My hair is growing back fast and to be honest it covers a lot of the bumpy areas where I can feel the lead and wires. The scar is very neat but the area next to it is still raised and numb.

The right hand half of this scar is quite raised and I think it rubs on clothing, causing a prickly sensation. 

I know I have put on a little bit of weight around my stomach area, probably also lost some muscle definition but the scar here is looking straighter and less indented than ever. I'm feeling a lot happier about it now! 

Getting there

It's now been a month since my operation and the scars are healing well.

My stomach scar is looking less and less odd so I'm hoping it will sort itself out fully in time. It is still very tender and I can't do up trousers properly as the waist band is on top of this area. The odd twisty feeling I get when standing or sitting up is now getting less.

My chest scar has always looked good but is still pretty tender and the muscle underneath is still fairly sore.

My head scar is still raised but the actual scar is barely noticeable! The skin on the raised area and to the right, up to behind my ear, is still partially numb and doesn't have normal feeling. 

I now turn the stimulator on when I wake up and turn it off when I go to bed. I do intend to try it overnight to see if I sleep better, as I am struggling to get to sleep and sleep all the way through the night at the moment. 

The turned up version of the 3rd program setting is now not pinching and feels fine. I can feel it more constantly now but not in annoying way. 

I guess I should now give the other programs a go now to see how I feel about them now that they might not be so pinchy!!

I am now switched on....

The past 3 days I have finally had the courage to turn the implant on!

It's strange but not horrid. 

The first program I used, number 3, I seemed to get used to within a few minutes, so I turned it up, but then couldn't feel that after a little either. Strangely though, I could feel it more if I tilted my head to the right, rested my head against the sofa or the oddest one, had the wand and remote connected to the battery! 

Today I tried a different program, number 5, but within a coule of minutes I had to change it, as it was too sharp despite being on the lowest level. I changed it to program 4, which is a more 'tappy' but again I have got used to over a short while and then barely feel it.

I am not sure yet how well it is helping with the ON pain, as with all the other pain and recovery, I don't know that I'm experiencing higher levelled ON pain . And the lower level constant pain I feel seems masked by the stiffness and surgery discomfort that I am still feeling.

The incisions though are looking a lot better. The chest one looks amazing and I can tell will eventually be barely noticeable. The one at the back of my head is still raised but is neat and I still have numbness between it and my war. My stomach incision is neat but still puckered and odd shaped. It might be getting slightly better but it's hard to tell' 

Chest

Head

Stomach

Emotional

The night before last I just randomly broke into tears!!!! So unlike me. I'm guessing what I've been through is finally hitting me, so have decided to wait until next week to turn my implant on.

I'm not in any rush! I've put up with this ON pain for so long, I can cope I little bit longer.

My stomach incision is still upsetting me, as it's still puckered and wonky! I think I can feel the battery right underneath the scar, so I was wrong in thinking that it was resting on the scar. I now have no idea why it is such an odd shape!! Everyone just keeps saying it will sort itself out over time....and, it's not that bad....and, it's better than being in your chest....but I still have a deformed body! I kind of blame myself because I was the one who demanded not having it in my chest, so I feel like I brought this on myself!

Not sure how that is ever going to straighten up!!! :(

My other incisions look ok.

The chest one is perfect...

The one on my head is still pretty lumpy but am presuming that will go down as the scabs from behind have only just come off! 

Only time will let for any of this now, I guess!! 

Surgical staples removed

I've just come back from the doctors to have my staples removed. I have to say, I never thought it would be so painful! I totally hadn't prepared for it at all, as I thought it be nothing.

At one point it felt like I was being ripped open and I went all sweaty and hot!!! 

She started with my head and apparently the clips had some scabbing over them so they were difficult to remove. I asked her to do my chest next, as I stupidly thought that would be easy as it was flat, I was wrong! This was the worst!!!!! My stomach though was easy, as she could move the skin to help get the staples out.

So, at 12 days post op, the incisions looks good and apparently very neat.

I am now finding it more difficult than I was to lift things right handed and stretch, as the incision is so tender and feels like it's ripping. Am sure that will sort itself out eventually but for now it's not what I expected!! 

A week post Cyborg...

I just haven't got my head round the fact that I need to take control of my implant yet!

It's still weird that I have got to select and choose what, when, how. So I basically haven't had it turned on as of yet! It's all just a bit too much to cope with. 

I can now feel where the leads are and where they have gone. It's most obvious at my neck and over my collarbone but I can feel it just going over the bottom of my ribs too. I can also feel the paddle part of the lead sitting at the base of my head. 

I am still dealing with the aftermath of the operation, such as getting little nerve twinges at the back of my head, pulling and aching from my head and chest incision and sore areas where the leads where tunnelled or are positioned. 

I am thinking that once I have the surgical staples removed, hopefully some of the discomfort will ease and then maybe I can focus on the benefits I will hopefully get from the implant.

I also am still having some issues with the numbness of my right ear. The top and bottom of the ear more or less feel normal but the middle of the outside is numb and also gets strange pulling pain. It's so annoying!! The area behind the ear when the lead is tunnelled is also the same. It doesn't help that that is where the dressing has to stick to cover the incision of my head. I am having trouble with this dressing as the different type is ensuring the blisters are drying up but it just doesn't stick for long! I am changing it every 2 days. 

And my hair is so frustrating....it's still caked in iodine and this is now pulling on my head at the back. Guess it's like dreadlocks!!! I've done my best to comb it out but really it needs a good wash, but with this dressing not being stick properly and do not waterproof, guess I'm gonna have to wait a while!! Grrrrrr!

Here are some new incision photos.....7 and 8 days on.

You can see this stomach incision is still very swollen and weird shaped. 

This is a photo looking upward so you can see the overhang at the top. I think that feels like my battery there, but hard to tell as its all very tender to touch!

Incision photos

Here are some photos of my incisions.

First, is my back of head. This is 2 days post op.

I have developed a small blister at the bottom. Apparently this is due to the dressing used, so the nurse applied a slightly different and smaller one!

I also have still got a numb right ear and side of face but have been told the feeling will eventually come back. Think it is a bit more normal today but not back to normal.

Here is my chest incision, 3 days post op.

Not sure why they didn't use their drawn on line to make the incision but too late now. 

You can just make out the leads coming from my neck towards the incision.

It looks fine but I did get a sore patch on the edge of the dressing, so I've made sure that the new dressing is at a different angle.

You can see the sore patch at the bottom of the photo.

Here is my stomach incision, 3 days post op.

This is the only one I'm unhappy about at the moment, as it's weirdly indented. I'm hoping this is just because of swelling and the surgical staples pulling the skin in. 

It's more obvious in this photo....

Pretty unsightly at the moment!!

Also I am still being sick!!!! Yesterday I managed to eat quarter of a pizza but soon afterwards it all came back up! I was then too afraid to take the morphine I was given so went to bed just on paracetamol. To be honest, I had a decent night's sleep! I only woke up to change position. Slept from 12 until 9am!! :)

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!! 

Seems like it's going ahead...this time!!

I am now getting to the last few days before the op, so am getting things prepared and doing things for the last time before I become a 'cyborg'! 

So went to the gym for the last time today! Am now at my fittest, slimmest and most toned EVER...so am a bit annoyed that I know I'm going to lose some of this hard work and have to get to this point again once I've recovered! 

I have also booked a haircut for Wednesday (day before the op) so that I know my hair is in good condition and won't need cutting for a whole afterqard, so I have time to heal! Also my lovely hairdresser has left, so am checking out a new one and filing her in on my op....and shaved hair nightmare!!!

I am starting to pack my bag and think what I need to take or have done before I go into hospital! 

It's all a bit surreal but I don't think it will truly hit me into I've actually had it done and by then I'll just have to cope with the aftermath!!!

New date = 20th November :(

After speaking to my consultant's PA yesterday, it seems that an urgent private patient has priority and so my operation has to change.

She has no idea about it until that morning, so doesn't know how a letter has got to me without her knowing first. Either way she was as annoyed as me! 

I asked how likely it is that this new date will also change, because I'll get bumped along once again, but she ensured me that she will not let it happen to me again.

I will now definitely be unable to do a few things that are planned early December, as there's no way I'll be ready to travel anywhere by that point! I just hope it doesn't ruin my Christmas too!!!!

So.....2 weeks to go then....seems like a long way off now :(

Really....??? What else can possibly go wrong???

So I have arrived back from a really chilled weekend away at a spa hotel, to prepare me for my operation and to have some quality time with my boyfriend....to find a letter from the hospital changing my operation date!!!!!!!!!!

I am soooo stressed and angry that I don't know how to cope with all this. It may sound silly but I have everything sorted, from clearing the freezer to planning when to take nail varnish off & wash hair etc. Not only that, it will mess up all the forward planning to ensure my class at school have as little disruption as possible. 

Obviously I am going to call up first thing in the morning to find out why this has happened and if I can still go with 6th November, but I just don't know what to do for the best!! 

I know these things happen, and there will be plenty of people who will say it has also happened to them, but it's already happened to me once....why again??! 

Answers to my questions....

My consultant called late yesterday evening and I have now had chance to ask some of the many questions I have about the stimulator surgery.

I only asked the most pressing questions, as I felt I would seem utterly crazy if I asked every single one. Some i will just find out when he discusses the surgery and recovery next Thursday on my surgery day.

 

Question #1

Do I have a choice where the battery is placed?

I explained that I don't think I can cope with it in my chest/clavicle area, and after losing almost 2 stone and putting on a lot of muscle, I felt I don't have any space there anyway! 

He agreed and suggested having the battery in the abdomen. I am happy with that, as it can be covered with clothes and won't be so bad if it does stick out slightly. He says he will need to get an extension was to do it, but it won't be a problem. 

Yay! So glad I have got past that issue.

Question #2

Will I be under sedation of general anaesthetic for the surgery?

I will be under general the whole time.

That's good with me, as I just didn't want to be under sedation for the whole thing. Although I must make sure I mention that I had a reaction to it when I had my tonsils out in Febuary. 

Question #3

Will my hair need to be shaved?

Apparently he will need to shave a small area just behind the ear!!!

Aaaaasahhhh! No way! Don't think I expected that. I know my hair will cover it and it won't be a total undercut but I really don't want to spend years regrowing my hair. I've spent long enough getting it to the length it is now! 

Question #4

How long is the stay in hospital?

Just out of interest I wanted to see what he said about this...he said 1 night. Well, I just moved on from that as I know that I'm in 2 nights now anyway.

Question #5

How long will I need off work for recovery?

He said usually 2-4 weeks. I reminded him that I was a primary school teacher and that I can't do less than 100% of my job when I am there. He said I could take a month off!

I know he ALWAYS under estimates the time I need off work to be able to work at 100 miles an hour with 30 kids all day long....so I'm looking at after Christmas realistically, I guess. I will definitely need a phased return too tho, as I can't contemplate going from this to a 50-60 hour week. 

Overall I'm soooooo glad that he called to be able to answer these most pressing questions. I feel that I can now prepare myself for the operation, knowing the things I NEED to know! I know most seem to be about vanity and how I will look, but I need to live with this! 

So, now it's onto planning the shopping and ensuring there will be things in the fridge/freezer that can just be put in the oven, as I'm not going to be cooking for a while. I am also making a delicious cake and freezing it, so that it can just be defrosted and the buttercream put in the middle. So when I am home after being in hospital....voila....instant cake!! And cake makes me happy!!!!! 

Paperwork has arrived!!!

A couple of days ago the paperwork finally arrived. For some reason it took almost 2 weeks but at least it's here. It is confirmed. I do believe it's actually gonna happen now!

Only thing....it states an expected stay of one night in hospital! That just doesn't sound enough, especially as I am only arriving at the hospital at 11.30am, so guessing my surgery isn't until the afternoon. How can I possibly go home less than 24 hours later!? ...as discharge time is between 9-10am.

Anyway, I emailed my consultant's PA just to check. She said that she was asked to provisionally book just one night but that it could be more. I explained my stress and that I couldn't be picked up on the Friday, as my partner would be at work, so she has booked 2 nights. She says it could still be more! 

At least this way I KNOW that I won't be pushed out and have no where to go or have no one at home! Phew!!

I was supposed to get a call from my consultant today, but despite having my phone beside me all day, still nothing and it's now 5pm!

I hope he calls. I really need to know so many things!!! 

Got a date!

It has been confirmed that my permanent stimulator operation will be Thursday 6th November.

I am pleased and anxious at the same time!

To finally have a date (which had better be the real thing) after such a long and gruelling wait it amazing. I will be able to potentially get on with my life, career and maybe never worry about how I will feel and if I will cope again.

BUT...I don't really want this! I've got no choice. At the moment this is my only option.

I am worried about where I will have the battery pack placed. I can cope with the scars, it's the battery protruding from my skin that I don't think I can cope with. I've seen photos of other people's and its nit what I want! I am intentionally on a calorie controlled diet now, so that I show how little space there is for a battery pack under my collar bone. I have got pretty muscly there too, since joining the gym, and believe it's just going to stick out even more because of that.

I am hoping to talk my consultant round to putting it elsewhere, as he is going to call me for a telephone consultation the week before the op. Fingers crossed!

So, in just 3 weeks time, I will (hopefully) be ready to go to hospital and become a cyborg (as so many of the children at school have already named me!) 

I just hope that this is all worth it it. That is gives me my life back and that the pain, dizziness and uncomfortable tightness eases and can be controlled. 

I am awaiting the paperwork, so that it really feels like it is going ahead. It should be here by the end of the week.

On a lighter note, some of the children on my class, acted out my operation at playtime today. They put me to sleep through a canula, cut me open, fed stick wires through and then sewed me up with neon yellow thread....apparently!! Made me smile and at least they are starting to understand. 

Educating the masses about ON has begun!!

Maybe got a date!

Although it wasn't the next day, I have finally heard from my consultant's PA at the Spire hospital.

She has given me two dates and apparently one will be the date I have the permanent stimulator. So could be 6th November or 20th November!!

Seems strange to be given a potential date. It doesn't feel real. I've not got any nerves or any feelings about it. Guess it's not going to feel real until I see it on paper and I get some more information about the operation. 

If it is November, then I suppose it's not too far away. Am hoping I get the nearer date, as it's less than a month & with half term at the end of October, I might just manage to stay in work until the op. Another 2 weeks on from that is just that bit too long.

I guess I will just have to see what happens from now. I have been very patient but it is running very thin right now!!! 

Is it really true??

It seems I might FINALLY be getting somewhere!

I spent all of last week phoning the NHS secretary for my consultant to try and get a copy of the funding letter and to see if they know anymore than his PA at the Spire hospital, where I was told the operation would happen. I left message after message and finally spoke to her on Friday!!

She said that this is no letter about funding, as funding doesn't need to be approved. Once it's been put through by my consultant, it will go ahead!! 

Ok...that's great news!!

Then she said that she had already emailed the Spire hospital and they were compiling a list of people who need the same operation, so we can all be done in one block to make it easier to availability for the stimulator rep that also needs to be there.

I then emailed the PA at the Spire and she advised me that I am on the urgent list to be done by the end of November! 

I feel relieved that I kind of know a date and am no longer being ignored because of lack of information.

Apparently I will hear from her again tomorrow, to hopefully get an exact date organised! Fingers crossed!!

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!

Yet another September with no idea if I'll make it!

So, here is another September, the start of a new school year, when the worry sets in about whether I will make it through this year. 

To be honest, it's more like will I make it through this term!! 

Last year was different, I had support in that I shared my class and I had one day out the classroom doing other educational work. BUT this year that has been taken away, despite the fact that I am in the same position as I was a year ago.....waiting for the permanent stimulator.

The two years before that though were truly difficult. I only just made it to the end of September both years. I had temporary operation after temporary operation but it meant I had about half the year out of work.

I really don't want that to be my future this year!! I NEED that operation to save my career and sanity!

Already, since the summer, my pain has increased. It is still up and down but the highest levels are much more often and much more painful than there were during my holidays.

Today I experienced my first dizzy spell whilst teaching. I know I can almost manage to ensure the children don't really notice but I know this is just the start. I've been back at work for 6 days!!!

This is utterly ridiculous :(

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.

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!!!

Looks like I'm in for a LONG wait now!!

On Friday I finally heard from the clinical team from my health insurance, despite them having the report from my consultant from 18th December!!!!
The short answer is.......NO!!!!!! :(
It, again, seems that they feel there is not enough evidence to prove the stimulator implant system will work for occipital neuralgia, so there is no change since trying to get this approved back in June! So why did they need to take so long about it!?
They say that they cannot comment on other cases, so the fact that someone has had this approved for the same condition, through the same insurance company, doesn't make a difference. A president is not set in the same way it would in court, for example, so we haven't moved any further forward.
Rubbish!!

Therefore, I am now on another waiting list!
I am on the NHS waiting list for my consultant, so who knows how long I may be waiting now.
My consultant's PA is trying to find out how long the wait might be, but my consultant himself did say it could be a few months. I bet that was a conservative estimate and it's way longer!! :(
I don't think he thought I would be denied by the insurance.

So....once again I am out of control of my life, my future and have no way of planning anything!
I had hoped I would get this sorted soon and could then move forward and onwards with my life but looks like that is not my luck.
I will be waiting for that letter with a date.....and until then I cannot plan my future with work OR with my personal life.

I am annoyed.
I am nervous, as I hate being out of control.
I am worried that that now I won't have so much say over where I have the battery pack is implanted.
Let's hope my wait isn't too long.
Fingers crossed!!

Still waiting........

Ok, so there's not really been much change in my pain since my last post a month ago. The PRFA obviously just didn't last very long this time round :(
My pain has got worse recently, since New Year's Eve, when my right side neck muscles begun to feel really tight and tense. I have now developed a hacking winter cough, which makes my head pain so much worse when I cough. I guess because my muscles are pressing on the nerve and my head is being jolted about!

After seeing my consultant for my follow up appointment on 13th December, he has decided that these small procedures just aren't cutting it and therefore are not worth it for such little lowered pain afterwards. Therefore, he is now finding a way to get the permanent stimulator approved for me.
A report has been sent off to try and get it approved as soon as possible, but after almost 3 weeks there is still no news. I know Christmas and New a Year have been in the way, so I am trying to wait patiently!!!
Interestingly, I also asked if he knew what was actually wrong with the occipital nerve, for example if it is damaged or trapped etc. He said he doesn't know, as it he did he would have been able to know the right treatment for me sooner.
He explained that he is positive that the stimulator system WILL work for me, as I have responded well to all the PRFA procedures, however long that may have been. This makes me feel better about getting this operation done, even though I am feeling pretty freaked out by this one.
I think it is that I will not be 'cured' but that the stimulator will cover up the pain feeling. Essentially I am not better, but just not feeling what I did. I just hope what I do feel instead is liveable with and not annoying. I have read up on this loads...some people say they feel massage type feeling, some say just lack of pain, others say light tapping sensation that they turn down at night in order to sleep. Who knows which if those will be me!?
I have begun preparing, as my only way of coping with the impending thought of this HUGE operation, and bought myself a 'onesie'. This is in anticipation that I won't be able to wear clothes with a waistband, as I am adamant that I DO NOT want the battery placed under my collarbone (as with pacemakers) as I am sure the bulge will show and many of my clothes show this area off. If I have a choice, which I truly hope I do, I would prefer it in my stomach or love handle area! I have seen that this can be done, it's just that the leads have to be tunnelled further and so can hurt more or more chance of the leads migrating. I still think if prefer it out of sight and disguised by some extra fat, as I am not a tiny size 10!! :)
I am not sure the enormity of this operation will hit me fully until I have it approved and have set a date for it to be done. What I feel is that I pretty much have no other choice!!! I am young and got so much of my life ahead of me....if I don't do this then I may never be able to do the things I want to do.....EVER!! This is my best chance at the moment to continue with my life as normal as possible!

So, the wait continues! When I hear something more, I will get back to you all.