Wednesday, 13 July 2016

Emergency reprogramming

After my conversation with Mr Patel last week, he was true to his word and organised the pain clinic to get me in to see Mike from St Judes quickly.
I only got the call on Monday and I saw him this afternoon.

He sees 7 to 8 patients with occipital nerve stimulation and says they range in what works or feels best. Most prefer tonic stimulation, as that it is what they are used to. A few prefer burst programs. But he feels that if you can find a program that works well, surely it is best to have it without sensation. 

It was great to see him, as it put a lot of what I feel, about being different, unsure and uncertain, to rest. He spoke about my recovery from this operation so matter of factly and agreed with all I said about it and how Mr Patel reacted, that it make things feel normal. 
He explained that he and Mr Patel had gone to a conference held by the man, who now works in New Zealand, that came up with the burst program and therefore he understood what was meant by the new way that the prodigy stimulator can work. Basically, they pinned the main guy down after the conference, to ask what he thought about how it can help occipital and peripheral was explained that lower frequencies would work better for this, even on the burst program. 
So that's what they would like to try for me. 

Mike also explained that it is different for occipital neuralgia, as compared to spinal cord stimulation, as the area that caused pain can be specifically targeted. However, with occipital neuralgia, to get stimulation in the base area of the nerve causing the pain is what is required, which means that it can spread to the specific area along that nerve. But the stimulation is best if it covers a large area. The moment the stimulation caused pain, pinching etc, then it isn't going to be useful.

So we set about trying a lot of different settings to find the contact and the lead the gives the best area of stimulation. Initially I got a lot of pinching and tightness from the programs but once he moved onto the higher lead of the two, I started feeling stimulation in a higher area than usual. It was around the top of my ear but spread across to the area that my new pain seems to be happening in. So he set a few programs with the stimulation in this area but using a tonic sensation. Then he created 2 burst programs that use the same but the last of them had much lower frequencies, as was suggested at the conference. 
Apparently it is suggested that it can take at least 3 days for someone to know if a burst program helps or is suitable, even on the 30% lower setting than it comes in at. Therefore, he wants me to begin win the tonic programs to find ones that help with the pain. They all have a wide difference between the start of the simulation to the time that it gets too much. So he feels that these have a great hope in helping me at this time. Then he could create a burst program of the best ones in the future.

Mike says that the Oxford Pain Clinic says it takes 6 months for a person to get benefit from the stimulator implant, but Mr Patel disagrees. I guess if I find a program that can help then I can't imagine if taking quite so long. But it seems that last time round it just was never quite right. So they gave it chance but something needing changing. 

I have come away feeling hopeful. It seems that at the moment the operation was worth it to get a better chance at helping the pain I am in and to get a different response to where the stimulation is feels good. I feel like it is in a better place to help the original ON pain, as well as the new pain since the surgery.

So now, to try these programs out and see what comes of them. 

Sunday, 10 July 2016

Consultant finally calls!

After waiting over three weeks for someone from the hospital to phone me, as promised, I write an email to my consultant's secretary to explain the situation.
On Thursday my consultant neurosurgeon, Mr Patel, called me.
Overall, he was pretty annoyed that his team had said "nerve damage" as he says there is no reason to think that, and it would be that the nerve has been irritated by the surgery and the placing of the leads. He said not to listen to what his juniors say and to take it with a pinch of salt, as they don't understand this specialist procedure.
He also said that he was aware that I was in hospital for longer than expected but no one had tried to contact him at all. After I explained that they were trying to speak to him before they said what they said but had been unable to get hold of him. He said that they know how to get hold of me but I heard nothing. Therefore, I get the impression that they didn't try hard enough!

1. There you go! Even Mr Patel is now stating that occipital neuralgia isn't well known or understood, not even by neuro registrars!!!
2. He never gets annoyed, he is the most laid back doctor I have ever met. This must have really annoyed him!

Anyway, now I have spoken to him, I obviously feel less worried about the future of this pain and know that it should settle and ease. However, no one, not even Mr Patel, can say how long that will take.
At the moment I still have the severe pain often. Occasionally I do shout out with the pain. Anything that I do causes this pain at some point. I am sure I am able to disguise the pain better now, as I am more used to it. BUT then that means that I am, as always, being misinterpreted of what I can manage.
So, I take each day at a time but yet I forget, until it happens, how bad the pain is.

I did also hear from the HR people at work, who called me on hearing that my doctor only gave me a 2 week doctors note as it would cause less worry and stress about returning to work before I hear about the 'exception' that could be made to allow me more recovery time. I had emailed to tell them this, also stating that I a still in massive pain and am not safe to drive as of yet.
So they finally made the decision that I don't need to return to work before the summer holidays. They will allow me that final week and not start the attendance policy until September. Therefore I won't trigger the formal attendance meeting until after the first week of next academic year.
This is a relief, as it was always asking too much to expect me back to work this side of summer, but with this unexpected severe pain, I know I couldn't teach, not even for an hour. It annoys me that it took my email about added stress to get them to make a decision. And also they kept that they had the power to do this hidden from me until now.
This makes me feel, as always, like they aren't interested in me as a person, but as a number, a commodity, a nuisance.

Tuesday, 5 July 2016

4 weeks post surgery

It has almost been a month. 4 weeks have passed by since my operation and despite some improvement, I am still uncertain of what the future of this operation holds.
Of course I am not able to move about more and in less surgical pain or discomfort. BUT the nerve pain is still there. It still pulls on my scalp and stabs into the crown of my head when I look downwards. Washing my face in the sink is still an issue and that's just something small that I have to do daily.
I am not sure as to whether the pain is actually less than it was or if I have become better at handling it. Because if I didn't, then I wouldn't function at all! 
I also wonder if the numb/over sensitive scalp is linked, and therefore when that gets less will the pain get less? Or are they separate issues?
Last time I had this surgery I did have a numb ear and was told that this would sort itself out eventually. It took about a year before it got as good as it was going to get. I still have a small part of the top of my right ear that has less feeling than the rest. Therefore, is my numb scalp like this? Will it take a year to get as better as it will do? 
It seems like I am being left to wait this out. Left to hope that this will get better eventually. 
Knowing I had numbness last time, from the nerves being disturbed, to me it seems like the new nerve pain is a separate issue. I didn't have it last time, even though I had the numbness. Surely it would be better for me to speak to an expert rather than make up my own mind with all this!!?

So the incision sites are looking alright. 
My abdomen is slowly settling back down and is less ridged.
I am not worried about this and it didn't really hurt or is sensitive. I have been able to wear my skinny jeans without any issues.

My head looks very neat but the top area of the incision is still numb.

My hair is growing pretty fast, although this time this is not my main concern. The area to the right of the scar is where the extra wire is, but this time round it doesn't seem so obvious or circular.

My chest is still very tender. There is still bruising so it must have been jammed in there fairly brutally. The scar looks like it is going to settle down and heal well. I ma truly hoping that I don't get the same overscarring and added sensitivity that I had before. 
Since I have been wearing my normal clothes, I have noticed that the battery doesn't seem to stick out as much as it did. This makes me feel less conscious of it and less of chance that people will notice and stare. 
The scar shows a little bit but I think they have extended it backwards rather than more to the left, so it doesn't show anymore than it did before!

So if I hadn't had the added complications, I probably would be pretty far along the line of recovery from the surgery itself. I would be able to walk with any problems and would maybe be driving. I would of course need to be carful with carrying heavy items and stretching but I can imagine I wouldn't be in pain, but rather discomfort.
However, it is the new nerve pain that is the worse problem. I don't think I can drive without the pain happening and when it happens it often shocks me and caused me to wince or jump. Because of this, driving would be a danger.
At the moment I can't see how I can teach, even for an hour, with this pain. I usually think I can force myself to get through it, as it's only pain rather than causing more damage to myself, but his time I just couldn't cope! I know I couldn't.
And this knowledge is scary. If things don't start to ease soon, I just don't know what the future is!!