Stimulation operation denied :(

Grrrrrrrrrrrrrrrrrrrrrr!!!

I couldn't write this yesterday, as I was too upset and too annoyed but it seems that I have been denied approval for the permanent stimulator despite everything being done to get it approved and my consultant stating that this is what I need next!!!!

Apparently, the funding hasn't been approved as NICE state they have acknowledged the procedure for chronic migraine and not occipital neuralgia. So, why oh why did my consultant say it had recently been acknowledged! Getting my hopes up when actually the research that has been studied is for people suffering chronic migraine!!! That is NOT what I have so I can't really be angry with the people who have decided not to fund it BUT it leaves me with nothing!

I had been given a hospital date...told that everything will be done to back me on getting this gone....spoken to friends & family, as well as to my work about it....had my haircut and treated in preparation for not looking after my hair for a while...and it has all been utterly pointless!!!!! :(

Back to square one!

I now don't know what my future holds.

What do I do about work? They only thing that was keeping them happy was that occupational health said I would probably be back 100% after the stimulator operation.

How do I begin to plan a future...a family? I'm 33 now and was thinking that in a year I should be well enough to start thinking about these things but now how can I plan that sort of change in my life when I can't cope most days!?

I just have lost my positive outlook on all this right now! I can't see past living day to day.

Whatever I can now do to help my pain, no one seems to be rushing to answer my calls about the next steps! These people who work as PAs for consultants have no idea with the lives they hold the key to. I need answers ....and I need support!

I am so angry!

This has helped to get some if it out but who knows what my future holds now!

I'll update on the 'alternative' plan whenever it is I end up finding out about it!!! :(

NICE acknowledgement of occipital nerve stimulator implant system

Great news!!!

Finally NICE (National Institute for Health and Care Excellence) have finally acknowledged that the stimulator implant system actually works to help people suffering from ON.

The system has been acknowledged by them for spinal nerve pain for years! Not sure why its taken them so long, to be honest! 

The guidance NICE give, as well as the data they collected during their research, makes an interesting read.

Here's the link if you're interested;

http://guidance.nice.org.uk/IPG452/Guidance/pdf/English

The first baby steps towards the nerve stimulator

After seeing my consultant the other day and thinking we would be discussing the nerve stimulator implant, I came away rather annoyed and deflated!!
As he had met up with another expert of ON, from Holland, he had an alternative for my next procedure! To do PRFA to the occipital nerve and then to inject local anaesthetic into a pocket in the muscle, so it will decompress the nerve away from being tangled amongst the muscle it runs through.
It sounded great...well, that's if I hadn't been battling this for so long and now needing my life back!

So after much discussion with loved ones, I emailed my consultant to say that I feel the stimulator would suit me better, as the other procedure is still only a temporary fix. Apparently it could last up to a year pain free! That's just not good enough for me now! Six procedures on...I need to be in control of this!! I was told he would call me for a telephone consultation.

This is when I truly realised that the stimulator was the right choice for me! I was so nervous about the phone call. Hoping it would be the go ahead.

So when he finally and said he totally agreed with me and my thoughts, I was over the moon! Finally a chance to get my life back...be able to plan ahead...to STOP feeling pain, day in, day out!
He questioned if I realised that I would have an implant, which of course I do! I've spent so many hours googling and reading people's blogs. I've seen all the hideous photos. I've even spoken to my hairdresser for the past year, to plan on growing my hair long, in case I need to cover up if any of my hair gets shaved off!
Still, despite all this there is no choice. If I want to lead the life I should have had, I need to do this!

Only problem now....is getting it approved by my medical insurance company!!
Now this is now down to my consultant. He is now writing reports to share my history and about the procedure, making it clear I have tried everything with only short lived benefit.
Also, only 3 days ago, NICE have now acknowledged the stimulator for ON not just chronic spinal pain. It's all positive so far.
My consultant said he'd back me all the way, so fingers crossed now!!

Gabapentin and Pregabalin

Although I've tried many different types of medication, from painkillers (that just do not work on nerve pain) to muscle relaxers, such as amitriptyline; the most common drugs that are likely to help nerve pain are gabapentin and pregabalin.

For some reason my GP never thought to prescribe these....surprise ;) but my consultant suggested I give them a go, especially while the procedures just don't seem to help my pain level for long.
Initially, probably because I had googled them a bit too much, I was very apprehensive! Mainly because they both suggest weight gain as a common side effect....as I had recently lost two stone, I knew this would make me even more unhappy. I also hate taking strong tablets, as I've had many that have made me sick!

Reluctantly, I went ahead and tried gabapentin. I started on the low 300mg dose which doubled day by day to 900mg. Very quickly I felt terrible on these drugs. I was dizzy and felt sick. I even spent one day unable to eat...but I battled through it as I wanted to prove I had properly tried these drugs.
After a week I began to feel kind of normal, although I couldn't notice any improvement in my pain level. When I went into hospital for my PRFA of nerve and facet joint procedure, my consultant suggested upping the dose to 1200mg. I had no idea what a strong drug gabapentin was until I realised I would now be taking more than cancer patients do. Ridiculous!!!

A few weeks later, which was only into week six of taking gabapentin, I suddenly developed a rash on both of my legs on the inside at knee level. This didn't go away or get better over a few days, so a trip to the doctor confirmed that this was some kind of reaction to the gabapentin. In a way, I wasn't sad to have to stop taking it! It didn't work anyway.... and my sudden stopping of taking it confirmed that, as I had no withdrawal symptoms from not coming off it slowly.


Rash on first day

Rash on second day

It was then suggested that I try pregabalin! Apparently it has less side effects...though that doesn't ring true if you read the leaflet!
I started on the dose 150mg per day, which went up to 300mg after a week. When first taking it I didn't feel too bad. I was surprised, so continued taking it, in the hope it may just help me.

After four weeks there seemed no change in my pain levels. My consultant suggested I up my dose by taking one extra 75mg tablet in the evening. This took me up to 375mg per day.
The first evening, after a couple of hours I feel extremely dizzy. That first nights sleep was the worst ever, waking up every hour!!!! The next day though, I felt back to normal. So thought I would battle through the new dose, hoping I would get used to it soon enough. Yet the next evening the dizziness returned, almost exactly two hours after taking the tablets. It wasn't until that next day, when I still felt dizzy that I thought the new dose had to go! How could you live like that??

So it seems the pregabalin, for me, is also useless.
I'm back down to 300mg per day now and am hoping my doctor agrees to take me off it at my appointment on Friday.

Update....26th April 2013:
My GP has agreed that pregabalin isn't working and so isn't worry taking. So I am now going to slowly come off them, dropping one tablets every few days! I'll update how that goes as apparently you can get side effects from the withdrawal!

Update....2nd May 2013:
I am now fully off the pregabalin! Can't say I've suffered any side effects by coming off these whatsoever.
I dropped one 75mg tablet every two days, so was off them in 6 days. The only difference there seems to be is that I'm not sleeping as well! :( I am waking up at least 2 or 3 times a night and then struggling to get back to sleep because I'm too hot!!

Pulsed Radio Frequency Ablation (nerve and facet joint)

Many people hear about Pulsed Radio Frequency Ablation (PRFA) and think that it is using heat to burn the nerve. Yes, this can be done but have heard awful things about the pain worsening! My consultant has NEVER ever talked about that as an option...and I'm glad!
My PRFAs were using very high frequency to ablate the nerve and stun it. This should then allow it to have time to heal, hoping that if the ON pain is gone long enough, the pain may not return!

Ooooo what a surprise this was NOT the case for me!
I had PRFA on its own, then four months later has PRFA with a nerve block at the same time....then four months later had PRFA to the greater occipital nerve AND the C2/C3 facet joint!
None of these lasted long enough! :(

When having the PRFA procedure, you are of course prepped as you would for any surgical operation. You most definitely NEED sedation...it's fairly hideous. Some of these procedures I can remember most of it, some of them I can't remember anything after the probe being inserted to rest on the nerve.
As with the neurostimulator therapy, after being 'earthed' with a pad on my arm or leg, local anaesthetic was injected into the marked spot on my head, before the probe is brutally forced into this area. After saying that I can feel the TENS type pulsing, I was often sedated more and often this is where I forget everything else. The one procedure I sort of remember, was feeling intense pulsing on the nerve that didn't feel nice, but the sedation made it bearable. I couldn't tell you how long it lasted but I seemed to be in theatre for about 40 minutes.
Afterwards, recovery was pretty painful and on one occasion I was given so many strong painkillers via drip that I felt so dizzy, my blood pressure had dropped dramatically so I was kept in overnight! My consultant came to visit, apparently I was in extreme pain so he's glad I can't remember a thing! I wonder what I said...hope I wasn't too rude!

The weirdest procedure was the PRFA to the nerve and C2/C3 facet joint. I was told they would ablate the nerve first, so that I could talk to them about correct positioning before being heavily sedated, then would be turned to do the facet joint.i assumed they would go into the spine joint through the back!
When I came round in the recovery room I was in super pain! My oxygen levels were low and they tried three different painkilling drugs on me. I was in recovery for an hour and a half!!!! My neck muscle on the right side felt achey but the back if my head felt like I'd been hit by a baseball bat! Utterly awful :(
When I finally got back to my room I felt rough. Eventually when I was helped to get out of bed, I was very dizzy and getting to the toilet was a struggle. I looked in the mirror and I realised....looking at the two puncture wounds on my neck, that's where they went in to do the PFRA on the facet joint. It honestly looked like I'd been bitten by a vampire!!!!!
After a few hours in hospital and when is eventually eaten, I went home with a pounding head.
As always I knew it may take a while to distinguish what is surgical pain and what is ON pain...but this time my head was numb! If I touched the right side it was a dumbed down feeling. This was great! It lasted a few days, until the pain returned :( Since then it has been really up and down. There seems to be no rhyme or reason as to what makes a low level pain day and what makes a high level pain day.

Right now I've had enough of this!!!
My life is so on hold.
I can't make plans, just in case I can't manage them.
This is no way to continue my life.

Peripheral neurostimulator therapy

Following my first nerve block, my consultant decided that I needed something different to hopefully get a better response.
Through discussions with other neurosurgeons he found out about peripheral neurostimulator therapy, sometimes known as pulsed radiofrequency (PRF). This is where a probe that is attached to a TENS like machine, is positioned on the nerve and turned up to a frequency that can be felt but is bearable. This is meant to re-educate the nerve into not registering any pain and it can stop the ON pain for up to 9 months.

For me, as before, I was prepped for the procedure much like you are for any operation. I entered the surgical theatre knowing I would not be sedated, as it lasts up to half an hour.
After being positioned on the table, and marking the point of most pain at the back of my head, I was injected with local anaesthetic. Then the needle/probe was poked through this mark...there was so much intense pressure and pushing at this point, it was almost unbearable! Once it was in place there was less pain and the probe was connected to the machine, after i was 'earthed' by a pad being attached to my arm. The machine was then turned on low for me to check that I could feel it! It was the oddest feeling...something tapping inside your head! But it was strangely soothing! Then the frequency and timer was set on the machine and that was it! I was then free to chat to the nurse who had been holding my hand and letting me squeeze it ever since the beginning. I was able to feel 'normal', well as much as you can lying in a theatre with your bum hanging out the back of the hideous gown you are made to wear!
When the timer stopped and the machine was turned off, I felt good! Well...until the probe had to be removed! Again that horrid pressure, like my head was being crushed, but it didn't last long!

After getting back to my room, after only a short time in recovery, I ate as soon as possible, took some tramadol for the extreme aching that I'd been left with, and left for home!

As far as I can remember, the aching pain lasted a couple of weeks but the ON pain was definitely lowered afterwards. Sadly this didn't last much longer than a week! :(

Two months after that I had a repeat nerve block. This helped me get back to work for a few days a week but still not lowered the pain enough to have a normal life!
The journey continues....

Nerve blocks

Nerve blocks are used as a confirmation of diagnosis for ON. If you get a positive result and the pain is considerably lowered, then it means that the occipital nerve is damaged/affected.
The nerve blocks are targeted towards the nerve that causes the pain. This can be the greater or lesser occipital nerve.

In my experience, the nerve block was far more of a big deal than I thought. I presumed that I would feel fine the day after...but it actually took a few weeks for me to get back to 'normal'!
During the procedure my consultant pressed over the occipital nerve area at the back of my head and found the point that if pressed worsens the pain. This is called the Tinel's point. A dot was drawn with a permanent marker and I was slightly sedated. The injections didn't take long, but were pretty uncomfortable.
After staying in Recovery for a while, I was taken back to my room. For a whole I felt fairly dizzy and although was given something to eat, felt a bit strange....but was glad to finally go home a few hours later.

The injection site was tender for about a week and although it was difficult to distinguish the difference between ON pain and surgical pain, I could tell the pain had been lowered significantly.
Unfortunately for me, this only lasted a week or so! At least that was proof of my ON ...but I truly hoped it would be the answer for me!
This left me wondering what next?!
How can I live like this? I had heard that you were able to have nerve blocks six times a year....there's no way it's worth me going through all that just for a week of lowered ON pain!!

The search for an answer continues.....