Not looking good :(

Ok...so it's been almost the same amount of time with higher pain levels than I had almost pain free, following my last procedure! 

I had 2 weeks and 2 days with mostly pain level of 2 or 3 but since then it is between level 4 - 6 daily. That is basically the same as it was before the operation on 8th November. 

How can the same procedure only give me such a short time, when before I got 3 months benefit!!? 

I am not really looking forward to seeing my consultant next Friday, for my follow up appointment. I know he will understand and begin to think where we go next, but it's such a shame that it just hasn't worked the same. He held this procedure up as being a bit of hope for me, and for others, as I know he is recommending it to others in the same boat.

I know it's no one's fault but I just want to get this sorted. Others really don't get that this is unpredictable! No one can guess when I will be in pain again it whether a procedure will work for a set amount of time. No one can even tell if the stimulator we are fighting to get approved and funded will even work for me! 

I find it so difficult to get my head round this!

I either seem to bury my head in the sand and think I can still do everything I always did and that my future can still be planned the way I always thought it would be .....or, I get a sudden realisation that I can't move forward, nothing is the same and people don't seem to understand that it is actually depressing.

If I felt this way more often, I wouldn't be able to continue. It's better that I am slightly in denial and believe I can be the person I was always meant to be! I don't need to change my job, or go part time! I don't need to stop doing the things I enjoy! 

But who knows what my future holds!!?

For now, I will take each day as it comes. Not think about my future changing but strive to keep my life as normal as possible and the same as it always has been. 

Occipital Nerve Pulsed Radio Frequency Ablation and Suboccipital LocalAnaesthetic Nerve Entrapment Release

So.....I finally get a chance to say how this repeat procedure went!

To be honest, I kind of expected it to be the same as last time (back in June) and so I had no worries or concerns, apart from knowing that yet again this is a temporary solution!

On the day (8th Nov), as usual, I am taken down I theatre. I am the first procedure of the day and so there was no hanging around. I am given diazepam through the cannula in my hand to relax and then wheeled through into theatre. 

In there, I am scooted onto my front on the bed and the theatre nurses and Mr Patel all set about attaching me to machines and earthing me with a sticky pad on my thigh. I am asked to point out the point on my head where if pressed it causes the pain, I am then given some Propofol as sedation and quickly begin to feel woosy!

All I can remember is the needle being inserted for the PRFA part of the procedure and feeling the usual pressure but no really much more. I'm not sure if even remember the next part of the procedure, where they went through the muscle to inject local anaesthetic. 

I next remember being shifted into the trolley bed again and wheeled out to recovery! In there I felt fairly awake and without being asked was given IV paracetamol, which usually helps a lot. I didn't feel pain just uncomfortable and although my head was completely numb from the anaesthetic, it felt like it was swollen and delicate! 

After going back upstairs, I felt ok, just tired. I had a decent amount of rest before being allowed to eat!

Then went home more or less as soon as I was allowed, sometime in mid afternoon.

My recovery was as expected...the ON pain was mainly gone and I was dealing with the achey stiffness from the actual procedure itself! Paracetamol and ibuprofen was ok in helping my stay comfortable. 

After a few days this acheyness eased but I was unable to list heavy things or sit at odd angles without feeling sharp pains in my neck.

This eased after just over a week and so now I am feeling pretty good!

It is now 2 weeks after the procedure and my ON pain is at a constant low of about a 2 on the pain scale. This means I only occasionally feel some minor stabbing pain on the right side of my head or at the back. I think I could live with this, as I can get on with things without thinking that I will be affected by certain activities.

I now hope that this lasts at least as long as the last time...which was 3 months!

That will get me through Christmas and beyond! 

My only thought is that this time I will be at work for much more of the first 3 months following the procedure, as I'm returning full time on Thursday (just under 3 weeks post procedure). Then with 2 weeks off for Christmas holidays that means I will be really put to the test in the New Year! 

Guess no one can tell how things will go and only time will tell!!!!

In a way, I'd prefer this to wear off early in the New Year, as long as the funding has been found for the stimulator, as if just want an end to this now! 

I'm putting things off and unable to plan without knowing what I may need next and when that may be! 

Next time I post, I'm guessing it will be to update you all because I'll be feeling ON pain more again! 

So Merry Christmas to you all and see you in 2014!!

(It's an even year....so that's got to be a good sign!) 

UPDATE: 26th November
Uh oh!!!! Knew I was tempting fate. NEVER expect positive things...I should know better.
The last time I had this procedure I was down on my life and not expecting good things from the procedure. He only difference this time was that I was positive and hopeful and expected to be back to work in no time!!!

Been in much worse pain yesterday and today :(
Gone from pain level of 2 right up to 5! It wasn't like I did a lot yesterday....well, nothing any harder or stressful than work anyway! Only did a bit of shopping and made the Christmas cake!!

The past few days the muscle on the right hand side at the back of my neck has felt really tight but it suddenly got much tighter and nothing seems to be relieving it! It is only because if this that I can see why the pain has got so much worse! I have been pressing my head at the usual area for a trigger point for my ON and I think it is back. This is always the sign that my consultant asks about when I go and see him. If there is a trigger point he always seems happy to go ahead with another procedure!

I think I'm going to have to see how I go over the next few days. Not going to see my consultant for the follow up appointment until 13th December!

Next plan

After seeing my consultant neurosurgeon the other day, it seems he is still fighting the NHS for funding for the neurostimulator implant. The only chance I seem to have of permanent control of my pain, and therefore other symptoms.

So....the only choice now is a repeat of the last operation that I had; Pulsed Radio Frequency Rhizotomy and Local Anaesthetic Injection Into Muscle.

At least I know the recovery isn't awful and not too long BUT it still means my pain control will be temporary :( and so my life will still be controlled by ON.

On one hand I am feeling positive, as the last time I had this my pain was lowered like never before and for longer than anything else I have tried.

But on the other hand I can't keep waiting for things to wear off or run out and for me to be in extreme pain again! 

I guess only time will tell how long this procedure will last me for but I am almost certain that eventually it WILL end and I'll be back to square one once again!!! 

Looks like the time is up...!!

I'm sorry to say that I think the pain free time I was enjoying seems to be over!

For over 2 weeks I've been suffering higher pain levels, dizzy spells and tight neck and shoulder muscles! :(

I'm battling with work still, but the tiredness and stress are not helping whatsoever!  

It's so unfair!! Other people who had the same procedure that I had, had been pain free or lowered their level of pain for a year or more!!!

Typical me, it's only been 3 months!! Why me!? Why can't I seem to find anything that lets me get on with my life!!? 

I am determined not to let this affect my attendance at work as badly as the past 2 years. It's always by the end of September that the ON gets too much to work. I want to make it to half term at least!!! I'm half way to the half term break...I'm going to keep battling through and see how I cope!!!

Not sure what to do with my life anymore :(

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.