Sunday, 12 January 2014

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.

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!!

Sunday, 5 January 2014

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.