This is it.....!!!!

It's 6 weeks on from my last procedure and I am still feeling pretty good!

I didn't want to tempt fate by adding a post before now, as I was feeling so good! In fact, undoubtedly the best ice felt for years! Even other people have commented that I look 'different'....'better'....'have that twinkle in my eyes again'! It's so good to hear that actually I didn't look 'right' when I was in so much pain.

After seeing my consultant a week ago, he was so relieved. He says I was the first person he had performed this procedure on, but that I should now forget ON for the time being and ..."to go off, get married and have babies!!"

If the pain returns then I can have a repeat of the same procedure and if need be, would still be a candidate for the permanent nerve stimulator! 

For now, I am happy with that!!

I'm hoping it doesn't return in full force, but as the pain has totally gone but is just extremely low, then that may not be the case. That's ok, as I know there is still a plan ...but for now I shall try and not think about it.

The blog may be fairly quiet from now, as in order to move on with my life I don't want to dwell on what was or what might still be!

For anyone reading this blog, you can see there is hope!

New procedures are being discovered and you can get your life back in control!

All the best to all my followers!

I'll report back in a month or so to let you know how things are going by then.

Pulsed Radio Frequency Rhizotomy and Local Anaesthetic Injection Into Muscle

It is only two days after my operation and I am actually feeling good. Obviously a bit stiff, achey and tired but overall my head pain seems to have gone!!!! That is something I barely get the chance to say anymore! 

The procedure was bearable. As always I walked down to theatre and a cannula was placed in the back of my hand. The anaesthetist gave me some diazepam to settle me (not that I seemed anxious) then I was wheeled into theatre and asked to lay face down on the bed. 

I then had a million hands putting the earthing pad on my leg, giving me oxygen, putting pads on my chest, all before my consultant spoke to me. I pointed out my most painful trigger point, which was marked with a pen. He then made a few measurements before inserting the needle, adding some local anaesthetic and then checking if the PRF was in the correct place by the nerve. This time, I'm not sure it was! I felt immense pressure on my neck, like someone was pushing me down with their thumb. The needle was obviously next to the muscle instead. A second needle was inserted and checked. This one was in the correct place. This one was turned on for 3 minutes, followed by the other, after changing its position, for 6 minutes. I now can't remember much more but was told that the same needle would inject longer lasting local anaesthetic into the muscle at the facet joint where the occipital nerve begins. Next thing I know, I am being wheeled out of theatre into recovery. I know some blood was wiped off my neck at this point, but I was awake despite feeling do tired.

I am only in recovery for a short whole, maybe 25 minutes! A paracetamol drip is set up, but I feel ok. I didn't say how my pain was, as I couldn't really feel anything. 

I'm back upstairs before I know it! And lunch arrives! :)

My head stayed totally numb for the whole day. Apart from my neck muscles feeling rather achey and a bit of dizziness and tiredness, I feel fine!

This continues for the best few days! No pain! Just aches. I can't actually believe how good I am feeling! Let's hope this lasts! 

So now I have my hope back for a decent near future! Summer should be good and I will enjoy it as much as possible!

For now I will forget that it will return at some point....and that I can't think too far ahead. I will try and enjoy the experiences that come along, particularly with the few people who have shown that they are true friends. Those are the ones that have always been there, through it all! Visiting, calling, texting, just to make sure I am ok. Thank you!

Plan E

Ok! Plan A and B are now never going to happen! 

Despite my consultant writing a letter to state that occipital neuralgia is synonymous with chronic migraine, they are still saying it is a risk. Apparently the NICE guidelines have a clause in there saying that it is experimental!!!! How annoying!

Surely EVERYTHING is experimental at first, until people have it done and they can tell that it works! Ridiculous!! 

So, therefore my life is left at crossroads AGAIN!

I am on the NHS waiting list to see if there is any special funding for the stimulator inplant. So I have to wait that out now, until I find out my chances of plan C getting a look in.....or not!!!

Of course, I will now have another smaller procedure that will give me an unknown amount of relief, but this is still temporary! I will yet again not know when ON will come back and knock me down!!! So, I can't forward plan my life still!! Grrrrrr!!!!

The temporary procedure is tomorrow! I will be having PRFA to the occipital nerve and injections into the surrounding muscle, in the hope to decompress the muscle away from causing pain to the nerve. This is a new experience for me and my consultant but apparently can give good results and a decent amount of time pain free! We can only see, I guess.

I usually feel really positive when I'm going into hospital for a procedure but this time I feel different. It's hard to describe but I don't see my future anymore so I can't feel the same. I feel like it's just a cover up....a way to shut me up for a little while.

What next......?!!

Well...it seems that there are now a few plans in place to gain some kind of hope for my future!
All I want is normality....the chance to plan things in my life without the worry!

Plan B: My consultant has now written a letter to the medical team that denied me the stimulator implant, to state that occipital neuralgia is a form of chronic migraine, as having a chronic headache/migraine is what ON is!! This could put Plan A back into the equation.
I don't hold out much hope on this plan, but its worth a try!

Plan C: I have been put onto my consultant's NHS waiting list, but this also needs funding to be applied for. He says there are 100 people currently on the list waiting for funding for different conditions....so I bet that's never gonna happen then!! :(

Plan D: If there isn't any funding available in Bristol, then he will transfer me to a different area that does have funding. I mentioned St. Thomas' INPUT pain management course, as I have heard about this through the UK occipital neuralgia support group that I set up on facebook, and it is a possibility if need be.

So..................in the meantime, it looks like I will be getting the temporary procedure that involves PRFA as well as injecting local anaesthetic in the muscle, in the hope of decompressing it away from the nerve. Apparently this will be next week! I hope so, as I cant go on like this. I feel like I am not who I used to be. I used to strive to be the best I could at my job...and now I am just happy to be in the background and can barely be there from day to day. It is an acheivement to make it though a day, let alone a school term.

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!!