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.

Reprogramming my implant

Just felt like it's time to give an update on how things are as well as to share how the reprogramming of my implant went.

In terms of the actually surgery, I am getting there now, I believe. I am gradually building up stamina and getting strength back but I am more or less able to do what I usually would do, just with a slight stiffness and uncomfortable feeling in my neck when I look sharp right, and if I bring my new to my chest or bend over far, then I can feel the battery pack pressing into me. 

The thing I am most worried about is the dizziness I am getting. I am sure it is more often and more severe than before the operation, as I get it every time I bend over or get up quickly.

I have begun training back at the gym, but my personal trainer guy won't let me do anything that means bending over or putting my head down (which seems spot on) so I've only really used the stepper, treadmill and weight machines. Not what is like to be doing ideally, but it's better than sitting about doing nothing and it meant I have begun to care about my diet again too!

Although I had been chasing the pain clinic to arrange an appointment to meet Mike from St Jude's Medical again, after Christmas and new year were over it was relatively easy. I saw him last week and after I described how the programs were pinchy and I could only used one, he had a look and agreed that they would feel like that as they were fairly strong. So at least I feel like I do know how things should feel, without feeling like I know anything at all about how this all works. 

Mike said that probably my lead is very close to my nerve, which makes me very sensitive to the stimulation, so therefore I can only cope with low frequencies. Most people have 4mhtz but I am working between 1.2 and 1.4!!!!

He set up 5 more programs that seem to work further up my neck and towards my ear and therefore aren't causing the muscle to spasm which is what the pressure feeling was. 

He did say to leave my stim off for a little bit as I was very zapped for an hour during the reprogramming. I actually suffered a headache for a day or two after the appointment, so that's something I'll have to remember from now on! 

I tried out the new programs two days later but none of them particularly felt normal enough yet to leave on for any length of time. I then found it extremely difficult to get back in the routine of turning my stim on in the morning, as I felt like it would take a while to get the setting right, so I put it off for a week. I feel bad that I left it so long, so as I haven't had much benefit from it yet, I just don't feel reliant on it. I guess these things take time and I am going to take time to figure all the out!! 

My next venture of going on holiday!!! It will be my chance to see what happens at airport security and how I cope with the implant whist away from home. I'm not particularly worried, as feel I need this time away to relax and chill in the sun to aid my recovery and well being.

It will also make sure I get over showing my scars freely to people I don't know! To be honest, I'm not as worried about that as I thought I would be. 

I'll update when I get back!

Rosehip oil trial

Whilst randomly reading information about scarring, I read that rose hip oil is a great treatment for scar tissue. 

I first tried Palmers skin oil with rosehip extract but found it a bit oily to use, as it went all over my bra and when my hair went over my chest it ended up oily, as well as the neck scar just coating my hair in oil.

So, being as my mum is a complimentary therapist, I used her about it. She says that they use it at her work a lot and she has heard good things about it being used for scars and skin. So she got me a sample and I have been using it for about a week and a half, twice daily.

I have to say that as it is a dry oil, it doesn't make my hair or clothing oily, which is great!! It feels nice to be treating the scars with something and it is very gentle to use on them.

 I feel that the scars have lightened in colour and don't look so purpley/red along the incision, as before using the rose hip oil. 

My head scar is barely noticeable and now doesn't have the lump where the staples were holding it together so much. Although it means that the loop made with the lead protrudes more and is still very itchy. This is mostly under the hair line so can't be seen in this photo.

My chest scar still has the lumpy thick part to it and I am really hoping to see a change in that at some point. 

I am definitely going to continue using the oil, if little else, to moisturise and lightly massage the scar tissue regularly but hopefully to see more rapid improvement.

Recovery is in sight

It's been a couple of weeks since my last update and I can now see that the odd feelings, pain, uncomfortableness will eventually disappear and I should not notice the incisions, battery and wires in my body at some point.

Things are much more comfortable now generally, although my stomach is still tender and wearing tights or jeans done up all day is too much. At night I often undo them or take tights off.

My neck is still a bit tight and turning fully to the right is pretty stiff. I don't force it too much as I don't want to cause any damage.

My chest incision out often pretty itchy and the muscle there still aches a bit, particularly when I stretch across my body to the left.

Overall thought I am now managing to do little bits of normal things. Although if I go too much, I do feel that my leads inflame the area surrounding it, particularly in my neck and chest and my stomach becomes more tender.

I did go to the gym just for 25 mins the other day. I only did low level exercise, just to get slowly back into doing something. I worked on a low impact program on the stepper and walked an incline on the treadmill. To be honest, that was pretty difficult and I had to rest half way through, after only 5 minutes!

My implant though still seems to be doing very little. My head pain has been getting worse and lasting for days at a time and the programs I can cope with don't appear to help. The other programs are still too pinchy for me to cope with for any length of time. 

I have been battling to try and get hold of someone at the pain clinic to get an appointment to see Mike, my rep, and finally today was told I can meet him next Tuesday. Hopefully we can set up a wider selection of frequencies so that I have a bit more choice! 

We shall see, I guess!

Starting to do 'normal' everyday things once again!

Things are gradually getting back to normal now. 

I managed to do up my trousers for Christmas day for a few hours and it wasn't as bad as I thought to sit down with them done up. They were the jeans that I wore to hospital, so aren't tight around the waist but still, it's a start. 

I went into town today, just for an hour. It was a struggle, as I hadn't realised that I need to walk slow as my legs pull on my stomach if I stretch my legs too far. And it's difficult to turn wearing shoes, as the grip they have on the floor cause extra pressure on my stomach too!

I actually ended up being forced to drive for 5 minutes on Christmas day, as my boyfriend had had a few drinks and had totally forgotten that I hadn't been able to drive. Apart from pulling out of the space and then parking, I managed to steer left handed, so I coped. Not sure I'll be rushing to drive just yet though. The pulling was very uncomfortable!

I also have had a few moments where my chest scar has felt like I was stabbed instantaneously. Today, I even dropped my cutlery because of it, as I was in the middle of dinner.

I have been retrying the other programs in my stimulator but they are still either too powerful and feel too much pressure or they are pinchy and uncomfortable. I can cope with program 4 but only low but then I can't rely feel it. So still, program 3 is basically all I have got. 

I'm not sure to what extent it is helping with my ON pain. I know it is helping with the low level pain at the back of my head and head pain in the front temple area. They are fairly every day levels of pain and the stimulator seems to ensure that I don't feel or notice them pretty quickly. I'm not sure that I've experienced any higher levels of pain to test the stimulator against as of yet! 

The scars are looking pretty good now. 

My hair is growing back fast and to be honest it covers a lot of the bumpy areas where I can feel the lead and wires. The scar is very neat but the area next to it is still raised and numb.

The right hand half of this scar is quite raised and I think it rubs on clothing, causing a prickly sensation. 

I know I have put on a little bit of weight around my stomach area, probably also lost some muscle definition but the scar here is looking straighter and less indented than ever. I'm feeling a lot happier about it now!