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.

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.