Tuesday, 6 September 2016

Ground breaking..!!! 😳

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!!!

Monday, 5 September 2016

3 months post op

It's been a total roller coaster.
As always your brain forgets how bad things actually were, but I know they were bad. I was losing hope a little bit and thinking I would never see a normal day.
However I have had a couple of weeks without much bad pain, just the standard low level pain that I can manage. I still find it painful to put my hair up and I still have a numb yet painfully sensitive area on the whole right back side of my scalp.
The last few days haven't been so good. Not the severe sharp pulling pain I had but now a quick sharp stab occasionally in the middle of the right hand side of the back of my head. This goes make me wince or move but it is gone very quickly. I also have a developing sense of ache, that feels like I have been frowning continuously. It begins to hurt the front of my head and forehead area, and gets wore as the day goes on!

I am now worried to change my program setting, as i haven't even linked up to the remote since then. I was worried that I might lose the good setting I have going. I know that is crazy, as I can surely just put it back into the program and level I have it on now and essentially it will be just as good. But it did take 3 days to settle and help, so I feel like I would have that wait again. And I don't want that!

All least things are better than they were. I just couldn't see the end before and was worried about to planning anything.
Now I can see that there is hope.
Annoyingly the stimulator was the key to sorting out that hideous pain that I had since the operation but it just felt so new and different!!
Anyway, now I can move forward and know that things can be better than I hoped. And maybe when I get the confidence to play with other programs, then I might find something even better!
Who knows??!! 

Update on incisions:
My stomach scar is really good.
I have recently been on holiday so happily allowed the sun to help disguise the scar and blend it in. It can barely be seen in any photos and it doesn't cause me much trouble. Occasionally I feel that it is there when something presses into it, or I lay a certain way on my tummy. It's not pain but just a different feeling.

My head incision is ok. It's not very noticeable but it is more lumpy than the previous scar. It is raised more at the top. The circle of excess wire is far less protruding than before, so that's good. However, it's still difficult to itch that area because the wires cover a large part of the neck here.
My hair is growing fast. But is quite an annoying length now. Can't put it up and it's noticeably cut! Oh well, it will grow.

My chest though is a different story....it really aches and hurts when anything presses against. Lying on my stomach for a massage or on the beach was really sore, as it pushes my breast up into that area which seems to push the implant up too. This hurts!
Also the actual scar isn't great. There is a small part in the middle which is normal but the rest is hypertrophic. This means the scar tissue has overgrown due to too much collagen. This makes it super sensitive, which twinges and gives stabbing pain when anything brushes against it, or sometimes even just on is own. I have always rubbed rose hip oil onto it, but this hurts. I guess it is healed now but it doesn't look great.
I am going to mention this to my GP who I am seeing this afternoon. I hope there is something more than the healan tape I tried last time!