Sunday, 16 June 2013

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!

Thursday, 13 June 2013

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.

Wednesday, 5 June 2013

What next......?!! 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 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. 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.