I have just got back home after seeing my consultant and the St Judes rep at the hospital. It was a bit of a rush appointment, as I only got a phone call yesterday asking if I could attend. It exactly 3 months since the operation today, so I bet they have to have seen you as a follow up by then!
Anyway, first, as always, I saw Mike from St Judes and after reminding him of whee I was last time I saw him and how much pain I was in, I told him what I had done with the programs and the outcome of leaving the second burst one on and he was literally jumping out of his seat with excitement!!!!!!
Apparently, the person that had spoken to at the conference just before I last saw him, did say that he had experienced 3 days for the program to help the pain levels. Also the excitement was that usually they say to use the standard burst setting which is 40htz but this was the one that I said was more aggregating. The program that has been helping me is only 10htz. This apparently is super exciting and ground breaking in that for people like me that can't cope with the sensation of the normal tonic programs, it wasn't proved yet what level would help. He would have said to use a lower level (such as turning it down to 60% of the strength it comes in at, whereas I was using at at 70-80%) but by me saying the lower frequency seems best, is exciting!!!
Mike was so astounded by this that he rushed off to get Mr Patel to tell him what has happened and begged to speak first before I said how I was!! So it MUST be something amazing I guess.
Mr Patel was excited too and really glad I had found some relief. He joked that they were worried that I was coming in today as they didn't know what the news would be.
Both of them asked me to contact them on the next few weeks or so to let them know how I am getting on!
Out of research purposes, Mike has set up a 20htz version of the program and wants me to retry the 40htz version keys to see how it goes, and also the 20hts version.
If the 10htz version is best, then he wants me to try it lower than I have been using it. He thinks this can help the breakthrough pains that I have been getting. Although he says that with any stimulator it will always be the case the there is some stabbing pain due to the nerve being stimulated.
Overall, he is hoping the 10htz version is the best for me, cos that will be the ground breaking find that it seems no one else has managed.
He said that only 2 of us have the prodigy stimulator for occipital neuralgia, so there hopes are on me to see what works!!!
Glad to be of service!!!