Phew!!!.............maybe!?

For once, I might have just been given some good news! 

Although I won't quite believe it until I actually have a date and the information through the post........BUT I have just spoken to my consultant's PA (strangely, on a day off work cos my head pain is so bad) but she has given me 2 gems of hope!
1. AXA have asked my consultant for an extra report to state why I am in need if the per nan stimulator and to explain this in reference to the NICE guidelines.
* Well, they have never asked for that before, so it sounds hopeful. We shall just have to wait until the end of the week to see what happens there.
2. I didn't realise that I've been on the NHS waiting list for sometime, and apparently they have approved the funding!!!!
* NO WAY....I thought that was a no hope. I was adamant that there wouldn't be funding for it, well at least it would be my luck that it wouldn't be for me!

So, it seems either way, I can get it done!
If it's approved by AXA it could be in as little time as 3 weeks, if NHS it's only 4-8 weeks wait, as I can have it done at Spire, because I have already been seen as a patient there!

So now reality kicks in!
Uh oh....I'm going to have a stimulator implanted in my body! But if it helps this pain, and for me to get my life back, then it's my only option.

Aaaaaaaaaahhhh!!

I've been experiencing the worst pain I have had for a long time!

It started yesterday afternoon, where I felt extreme pressure on the sides of my head. It felt like someone was pushing down into my head. At times it is unbearable and moving just makes it worse! 

I tried all my usual techniques, of distracting myself with chats, cooking etc but bending/leaning over made the pain far worse and nothing was stopping me feeling the pain! 

Last night's sleep was awful...I slept on and off all night! Probably getting 2 or 3 hours sleep at a time. I know I had moments of lying awake in bed, which is totally unlike me!

I just don't know what to do!! I am truly struggling with this now. 

When the pain lessens, I forget how bad it can be! I almost believe that I must be making it up, which of course is rubbish, but I obviously forget just how bad it can get! 

All computers say "NO"!!!!!!

I've just spoken to my consultant on the phone as he wanted to let me know that despite thinking he could get funding for my stimulator implant operation on NHS, it seems they have changed their minds!! 

He was going to put through a few people, in the same boat as me, as a group approval on NHS but the people who are in charge have now said that this can't be done! Each case has to be seen individually! He said that could mean tgat some won't get the approval! How ridiculous! 

So....the next plan is to go back to my medical insurance and for him to rock the boat a bit! He is going to go more senior than the clinical nurses/doctors that denied my op twice, and explain forcefully that this NEEDS to go ahead! He even knows the name of the person who has had the exact same op, for the same condition, approved by the same company! 

I truly hope this means it will actually get approved! If so, the wait wouldn't be as long as I was now having to think!

I don't really know what to think now....I'm so muddled and all over the place with all this! All I do know is, that if I don't get this approved this time, I may not ever get it done!!! Sounds like the NHS are being stubborn on this operation...and as I'm one of a few, the chances are difficult! I guess because I may have another avenue, he is going to fight that as the more likely option!

Frustrating.

9 more months plus.....

Not the kind of news you want hear, especially when you have been bothering people for over a month to find out how long the waiting list for the stimulator implant might be!! .....9 months plus!!

Crazy!

It also came at the worst time for me to think about the true consequences of that, as it was whilst recovery in hospital from my tonsillectomy that I received the email!!! I couldn't cry at the point...or get angry! My tonsil (or absense of) pain wouldn't allow me! 

I just can't stop thinking about what this means for my life! Well, of course it's going to be on hold for A LOT longer than I anticipated. 

It means that I will now be waiting until the next academic year, so I can't consider changing jobs or roles for September, as I will not be able to say I have had the life changing operation by then!

It means that my hope of thinking I could possibly move on with my life and start doing things everyone else seems to be doing won't now happen til 2015! 

I just can't imagine it! I'm stuck! Stuck where I am for the time being...& that, overall, is not the best place for me!

Life moves on for everyone around me...but I can't! 

At the moment I can't even think what to do in the meantime! I've done everything I possibly can to make my work life manageable! I've fought things I shouldn't have had to, just to make my work easier for me to manage...yet there is no end to this waiting!!!

So, does it mean I'm going to have to have another procedure that is a waste of time and strength, as they never last long, just to see me through!? But then if I do that and my stim op comes through, will they do it....because I won't be able to say that the stil is lowering the pain, if it is being controlled from the previous procedure!!!!

This is so infuriating!!!!! Grrrrrrrrrrr!!!

Starting to struggle...once again!

I honestly kept meaning to write a new post to say that since returning to work after Christmas/New Year holidays, the ON pain seemed to settle down and I was coping well.........
BUT.....
exactly 3 months to the day of the PRFA and muscle injection operation I last had, the pain and dizziness has returned! :(

Before this, I occasionally felt like my shoulder muscles were tight, I had slight dull pain at the back of my head and only dizziness sometimes.
Now, the pain has dramatically risen. I can feel it in my temple area as well as at the back of my head, I have had at least five extreme dizzy spells a day, which last approximately 30 seconds a time. These are both impinging on my everyday life again.

At the moment, I have no idea how long I am going to have to wait for the only operation that I now see having the potential to help me with all this.
I truly hope it is sometime soon, as I need to get out of this cycle of forgetting how bad ON pain can be, people seeing me mostly well and therefore forgetting I am not, to then going downhill again with a HUGE bump!!!

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.