Friday, 28 February 2014

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!

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!!
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!!!

Tuesday, 11 February 2014

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.........
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!!!