Tuesday, 31 March 2015

Battery flipping and wires stabbing!

I have been putting off updating about these current issues, as I was hoping they would sort themselves out!
It's been about 4 weeks now, so I guess not!!!

First problem:
Since that start of March, so just after I saw my consultant (typical) I noticed that my battery seemed to flip forward when I bend over. It seemed to happen when I had trousers where the waist line was on or below the scar site. It doesn't happen with my gym leggings or work trousers, as these are high waisted. 
It then seemed to almost get caught in the forward position and then catch on my ribs. A couple of times I have more or less had to push the battery back in as it is stuck. This not only feels hideous, it makes me feel sick for a split second. 
I now fear this happening everytime I bend down or over and so am starting to hold the battery site when I do bend over.

I know this photo isn't pretty, but this is me being able to hold the battery forward with my finger behind the top. This isn't normal and didn't happen before I pulled the wires off my ribs.
The wires are still off my ribs and haven't scarred back down totally! To me, this shows that there is now excess wire so the battery must have moved upwards slightly.

Second problem:
Since 13th March I have also been experiencing sharp stabbing at the back of my head, but where the excess loop of wire is. It happens for a few seconds but is often so intense it stops me in my tracks. It feels very sharp and quite often that area is also very sensitive to touch and hair movement.
I have been keeping track of this and it seems to last for a few days and then go for about a week and then continue that cycle.
I am not sure what is causing this. Whether it is more disturbed nerves (due to my over sensitivity) or it is the actual wires causing this feeling! Who knows!!! 

So over the past two weeks I have left two answer phone messages with my consultant's secretary and emailled but only just heard back today. Although, she seems to have not understood, as Mike from St Jude's phoned me thinking there was a problem with the battery. I explained the issue and he thinks I may need to have the battery replaced further down as I have already experienced this for four weeks, which is long enough for it to scar back down. 
I REALLY don't want that, but also I can't put up with this awful feeling and worry whenever I back down!
He is suggesting an appointment be made with my consultant for after Easter, as he is away at the moment.
Guess we shall wait some more ....and just see what he has to say!!! Grrrrrrrr!!

Thursday, 12 March 2015

Link between menstrual cycle and head pain??

For a long while I have been keeping an eye on when my worst pain seems to happen, and many times (not all) it seems to be the day after I start my period.
It comes on suddenly that day and lasts a few days without any let up at all! Nothing seems to help at this time, I just have to wait for it to go.
I have researched this and asked other people with ON and many say the same. The pain management doctor I saw last week also said it is very common.
It seems that the lack of the 'pill' controlling my hormones makes the pain worse. I was advised to take more than one pack in a row, but I have always taken 2 packs together and my body gives up if I try to take more! 
I'm not sure how to deal with this. I guess it is possible to consider a different type of contraceptive that stops periods altogether but others have said that what would be their 'time of the month' is still when they experience worse pain. Also, hoping to start a family some time soon ish then I am going to have to come up contraception altogether.
I don't feel there is much benefit in changing things and maybe solving the issue just to make it potentially ten times worse soon. By still having done worse pain, I can continue to experience this and get used to it, rather than feeling well and then throwing myself right back into the worse pain! That seems worse to me!
Basically, I don't feel I have an easy answer to this at this time in my life!!!


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! 

Tuesday, 3 March 2015

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.

Sunday, 1 March 2015

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!!!