Reprogramming

Last week, the day after my follow up appointment, I had my third programming session with Mike from

St Jude's Medical that provide the implant. 

I desperately needed some programmes to try and help my worse pain days, as nothing was breaking the pain I had last week! On the appointment day it was the third day of severe constant pain. This was the longest I had suffered since the op.

We set another 4 programmes that are all extremely low frequencies, all at 2Hz. I obviously seem to know the ones that are too much for me, as I mentioned the programmes set from before that I hated and made me have goose bumps immediately and these were set at 150Hz, so we are never going that high again!!

There is one setting (program 13) that seems different, as it spreads out the higher it gets. It's strange though as you can feel the tapping through my skin, close to my ear. It's more or less at pulse band width, so it pretty slow. Apparently I seem to like these most!

Although I spent as long as possible, day after day, with this setting up pretty high. I still couldn't break the pain. It eventually subsided 5/6 days later! 

I'm not sure it was the implant though, I think it had just been long enough.

I am continuing to leave the stim on day and night on my low setting (program 8) as I barely feel this one.

We shall just see what happens, as always, I guess! 

Follow up appointment

Today I had an appointment with the pain management doctor at the Pain Clinic. I was expecting this to be discussing my pain levels and a check up of my incision sites.

Well I have to say, it was the oddest of hospital appointments ever!!

After waiting 30 minutes, a lady collected me and introduced herself as Lucy, another of the pain doctors. She questioned that I have an appointment with my consultant tomorrow as well, and when I confirmed this she says he was also here today. Now I didn't realise this at all! 

I entered the room and there was Mr Patel and Dr Love-Jones, the pain management doctor I was supposed to be seeing, or so the letter had stated. (Also she has been my anaesthetist quite a few times).

So they basically started asking me questions about how I now felt, if I was glad I had had the surgery, what percentage did I think the pain had improved, whilst making notes about what I was replying.

I mentioned that I had noticed a pattern with some of my worst pain episodes, and that they link with my periods. Dr Love-Jones said that is fairly common. We discussed having less breaks between packs of contraceptive pills. She also suggested leaving the stim on overnight so that maybe it will help not have the worse days as often. 

I said that I felt it had improved my pain by 60-70% as every day is great but the worse days can't be controlled by the stimulator, although these episodes are less often than they used to be. Mr Patel said that I would be meeting with Mike, the St Jude's rep, in the appointment tomorrow and that I obviously need some new programmes for those times. 

He also asked about if I had got back into my fitness and how the wires that has been moved were. He was really happy that I was back at the gym and that the wires were now settling back into place. 

Dr Love-Jones asked about what causes the worse pain episodes, to which I explained it seems to be tiredness and stress which is what my job is all the time! Mr Patel mentioned that is had many phases returns to work. I said that I was hopeful that I would get to full time but that I was considering part time, as now I've had this operation I can see what I can manage longer term, and he thought that was a good idea and that the implant wasn't going to fully improve my life!

I also mentioned about the change in the feeling if my right ear and that it is almost painful when hair or anything touches it. Mr Patel thought that this should return to normal within about 6 months. 

I showed them my chest scar and explained about the sensitivity and pain and that I had been using the Haelan tape. Dr Love-Jones suggested not using it anymore and if in 6 months to a year it was still painful, then maybe silicon gel (that plastic surgeons use) may be helpful. Mr Patel suggested using caipsin (the chilli stuff) to help distract from the pain. I've got tiger balm still from many years ago, so maybe I'll try that!!

Mr Patel also said that I have become very sensitive and sensitised which is common for people who suffer from chronic pain apparently. So the extra things I am dealing with are because of this over sensitivity.

And that was it!!!!!!!!!

No one checked on my scars at all!

So I'm guessing it was a chance for them all to find out how it has worked for future reference. I guess I'm a bit of a guinea pig and they are keeping notes on how it's good and if it's worth it for others. 

I don't mind at all ....but it would be nice to know what was going on. 

Update on my scars

I've been meaning to do an update on how my scars are doing and what they look like over 3 months after the surgery. 

My head scar looks pretty much the same, as it healed pretty quickly and neatly. I think the loop of extra wire is now more obvious than it was, as all swelling has gone now.

My hair has now got to an annoying half stage, which it's too long to be unnoticed but too short to pin up or wear within my ponytail!

My chest scar is still very lumpy (well, half of it) and the sensitivity is still high when brushing on clothes or if my hair touches it. 

I have now used the Haelen tape for about a month but I can't see any improvement or difference in how it looks at all. It is still just as raised, just as red and shiny and just as sensitive. 

Immediately after taking the tape off, the scar does seem flatter and the skin around it is paler, almost white! This calms down overnight but then the scar raises back up again too. Sometimes whilst wearing the tape, the area become very itchy and the tape seems to pull on the area. At most it seems to helping with clothes touching it during the day, but there are times when I feel it needs to have a rest and so I leave it open for the day, with just some rosehip oil applied. 

My stomach scar is just becoming less purple and healing well. It is straighter than it was and does not seem to be wonky or puckered! Even though I am not back at the gym properly and losing weight again, this does not seem to affecting the scar's look or shape.

Metal detector experience

So I said I would share my experience of going through the airport security avoiding the metal detectors, as I've been recommended to do.

I have to say the experience at Bristol airport was so easy and I did not feel like I was being annoying at all. I explained to the nearest member of staff and showed my card (which, to be honest, they didn't really care about seeing). They let me past the metal detector, through a gap and a female member of security patted me down. I was then asked to stand on a circle and raise my arms, turning slowly in a circle. I can only guess that this was a different type of scanner but it wasn't really explained, just that I was fine to go in it. The female security then chunked a couple of areas (bra and belt area) and that was that! It took slightly longer than my boyfriend going through normally but overall not too bad!!

It was a lot trickier abroad ....especially as it was Egypt, which is a military airport!! We asked spoken to out Thomson rep on the return transfer and he says he would speak to security for me. 

We joined the queue and before we got to the end he had spoken to the security at the scanner. They made a gap between the luggage X-ray and the metal detector (by lifting and moving the conveyor belt across slightly) so I could just squeeze through the gap. The other side a female member of staff patted me down and that was it! This was very easy and not too much fuss!! 

The problem was that this airport had another security area with more metal detectors after check in. We were on our own here without the rep and been unaware that there was another security area. So, we tried to explain to security on our side of the scanners but the man says he didn't understand!! We were now panicking!! There were no gaps between scanners and no one else our side to talk to. I sent my boyfriend through first to try and explain to someone on the other side. Luckily this worked!!! They understood and allowed me through a scanner that was turned off down the end. No one escorted us there, so we just moved something to make a gap, which again I squeezed through. As I walked back up to the other scanners, a member of female security patted me down and that was that!

Overall, I think it will be pot luck when abroad if someone understands your issue or not. It would be so much easier if the card was a standard one for any implant device so it was internationally recognisable. 

The worst experience of all though was at the hotel!! 

You know what it is like when you arrive, tired and grumpy, after a long flight. You get ushered into the entrance of the hotel to check in and to your rooms as soon as is humanly possible! So the front door is opened and a fair few holiday makers enter before us. We follow, but without any warning, or sign, or anything, we find ourselves immediately walking through a metal detector with a security man sat with his desk right up to the edge of it. As soon as I walked through I realised and I felt a massive thump to my stomach area, where the battery is. I now can't work out if that was reality or panic and anxiety about going through the scanner but all the same, it was expected and totally invisible, especially with loads of people walking in ahead of you.

I tried to explain to reception staff at this point but they didn't understand. I used the word 'dangerous' but they took this the wrong way and got stressed about it. Instead I went to our room and immediately checked the implant was working properly, which luckily it was.

I decided the only thing I could now do was to inform the Thomson rep so that other people don't have the same issue in the future. 

I hate going to rep meetings on holiday, but I suffered all their spiel and waited until afterward to speak to them. I spoke to the English rep, as I presumed she would have more chance of understanding about my implant. She didn't!! I told her the issue and she just looked at me blankly. So, i reiterated the problem and what this can mean to someone like me and she stared at me then casually said she would suggest the hotel put up a sign. No apology. No understanding. No humanity at all!!! I basically left that meeting knowing that things are always going to be difficult for me to get people to understand and see things from my point of view. 

Funny enough, no surprise, on leaving the hotel at the end of the holiday, there was no sign, no warning, no change. The security man was still sat with his desk more or less touching the edge of the metal detector. I tried to explain I couldn't go through it, so that I cook take my luggage outside, but he basically laughed at me. He had no idea what I was talking about. So I had to squeeze past him, whilst he laughed, which made me feel so uncomfortable! 

I think this is probably a bad experience compared to other places or holidays on the future but it has shown me how vigilent I need to be and how difficult it may always be to explain, especially whilst abroad. 

 

Since my return I have read loads of advise from other people with similar implants, saying that they have been told they can go through metal detectors, but I think I'll stick with avoiding them. Not only am I sure I felt a jolt, but apparently the implant may turn off (which I guess for this type of implant isn't a massive issue) but also I have heard that it could wipe all the programmes off the device, which would leave you essentially 'without' a device until you could get reprogrammed.  

Life is never going to be easy!!! 

Consultant gives me a call

As I did have my consultant's secretary's number, I did leave a message yesterday and this morning I got a phone call from my consultant himself! 

I explained what had happened abd said that the battery area was tender yet the implant all still works properly, and he said he wasn't too worried about it and that it would be fine for him to check things over on our follow up appointment on 4th March. I asked if I shouldn't have been stretching at the gym, and he said I should be able to do that and not to worry about doing those things in the future. 

He asked how the implant was working and I said that for everyday it works really well and that I don't feel the pain but when it is really bad pain I haven't found a program to help as this doesn't happen often enough to try lots of programs. 

He suggested that he will contact the rep to reprogram on the date I have the follow up appointment. 

So overall, my worries are relieved and again he is very easy going about what I can do, which is perhaps why I didn't really get any advise at the hospital.  

Oh no!!! The lead has pulled off my ribs!!

Uh oh!!

I think the lead has pulled off my ribs area as now you can see a bump when I move in certain ways and can feel the wire and even move it!

The only thing I can think is that I recently returned to the gym to begin a rehabilitation back to exercise again. I was just using the stepper and walking on an incline but my personal trainer got me doing some work on the step and with 2kg weights (which is nothing compared to the 5kg I was using before the operation). 

I didn't notice that day or even for 2 days later, but I was in a lot of muscle pain around the back of the ribs, which was just from the exercise itself.

Not sure what to do about it! Surely it will secure itself back down again with new scarring?? 

I have got an unrelated doctors appointment on Tuesday so maybe I will ask about it then. 

UPDATE: Tuesday 17th February 2015

Well that was a waste of time!!!!

I explained the problem and she asked to see. I lifted up my top and showed her, I even put my finger where to wires sticking out were but she said she didn't know what she away supposed to be feeling as she doesn't know what the wires feel like. I asked her to touch gently, but press down, as then you squash the wires and won't feel them, but she didn't do that. 

She then quizzed me about what I'd had done but didn't really ask why or how it was, or even check my scars at all! 

She then palmed it off on me calling my consultant's secretary and printed off letters which I have a copy of, with out of date phone numbers due to the hospital changing sites last year. 

So I am none the wiser about what is recommended or advise for the future. Great!!!!! 

Chest scar

As you can see, one half of my scar is flat and really neat but the other half is raised and overgrown from the original incision size. I discussed this with my GP over the phone and he wants me to see a nurse tomorrow about it. 

I will update once I have been to the appointment.

Update: 13th February 2015

It was an interesting visit to see the nurse the other day. She was so bemused by the scar that she got another nurse in to look at it too. They couldn't work out why half is completely perfect and the other half raised, especially as it is completely healed at this stage. 

She agreed that it is keloid like (but can't diagnose as a nurse) and really understood just how sensitive it is! 

After a bit of googling to find out its name, she prescribed my Haelan tape. It is a thin tale, much like sellotape, but is impregnated with a steroid. She felt this might not only protect from clothes running it but also press the scar down whilst hoping to improve it with the steroid.

I've now tried it for 4 days, just during the day, and it does seem to lighten my skin temporarily which of course make its all look better. By morning the colour has returned to normal but I think the scar is slightly flatter than it was. 

I have had some redness from wearing the tape but it isn't a rash so I am continuing to use it daily.

We shall just see what happens now.