Can't take much more!!

I literally am at the end of my patience! I can't cope with the endless waiting, alongside the lack of help for my ON as well as this new pain around my battery site. 

This new pain has been much worse the last 3 days, and randomly causes sharp, stabbing pain lower down in my abdomen and sometimes is tender to touch. If clothes brush over this area it feels 'odd'. I can't explain the feeling properly but it just feels different, more sensitive I guess.

I don't know how to manage all this!!

I have also developed a hacking cough and this is causing my stomach muscles to work a lot and much more often than usual, this definitely causes some of the battery site pain, as I can feel it when I've been coughing. 

This, again, doesn't help.

I feel lost. Like it's all hopeless. I'm waiting patiently but it's going on too long. Even when I finally get to see my consultant next week, I undoubtably will have another wait, for who knows how long! I am going to have to be truly honest about what I feel and what I need. 

An answer would I be a start. And a date of when things can be done!

Here's a photo update of my incision sites and tender battery and wire area.

The wire can clearly be seen as a loop at the base of my ribs. This protrudes more if I twist the top half of my body to the right, whilst the bottom leans left.

This photo clearly shows my abdominal muscles are alongside the battery area, as the battery area is very flat and the rounded dip is the muscle that pushes on it. I am also sure that when I sit down the battery is pushed over my hip bone and the sticks out. I can feel lumpy tissue thy has grown into the battery at this point and it is uncomfortable. 

Here is the awful and still tender scar on my chest. It is very red and lumpy and itches and often has a 'spiky' tingly feeling if something brushes on it.

Here you can see the looped extra wire in my neck. This also itches still and is very annoying and in the way. It's very difficult to scratch because of the amount it sticks out.

Here's another view. You can see the very neat scar here but the loop of wire is still clearly visible.

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.

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.

Emotional

The night before last I just randomly broke into tears!!!! So unlike me. I'm guessing what I've been through is finally hitting me, so have decided to wait until next week to turn my implant on.

I'm not in any rush! I've put up with this ON pain for so long, I can cope I little bit longer.

My stomach incision is still upsetting me, as it's still puckered and wonky! I think I can feel the battery right underneath the scar, so I was wrong in thinking that it was resting on the scar. I now have no idea why it is such an odd shape!! Everyone just keeps saying it will sort itself out over time....and, it's not that bad....and, it's better than being in your chest....but I still have a deformed body! I kind of blame myself because I was the one who demanded not having it in my chest, so I feel like I brought this on myself!

Not sure how that is ever going to straighten up!!! :(

My other incisions look ok.

The chest one is perfect...

The one on my head is still pretty lumpy but am presuming that will go down as the scabs from behind have only just come off! 

Only time will let for any of this now, I guess!! 

Surgical staples removed

I've just come back from the doctors to have my staples removed. I have to say, I never thought it would be so painful! I totally hadn't prepared for it at all, as I thought it be nothing.

At one point it felt like I was being ripped open and I went all sweaty and hot!!! 

She started with my head and apparently the clips had some scabbing over them so they were difficult to remove. I asked her to do my chest next, as I stupidly thought that would be easy as it was flat, I was wrong! This was the worst!!!!! My stomach though was easy, as she could move the skin to help get the staples out.

So, at 12 days post op, the incisions looks good and apparently very neat.

I am now finding it more difficult than I was to lift things right handed and stretch, as the incision is so tender and feels like it's ripping. Am sure that will sort itself out eventually but for now it's not what I expected!! 

A week post Cyborg...

I just haven't got my head round the fact that I need to take control of my implant yet!

It's still weird that I have got to select and choose what, when, how. So I basically haven't had it turned on as of yet! It's all just a bit too much to cope with. 

I can now feel where the leads are and where they have gone. It's most obvious at my neck and over my collarbone but I can feel it just going over the bottom of my ribs too. I can also feel the paddle part of the lead sitting at the base of my head. 

I am still dealing with the aftermath of the operation, such as getting little nerve twinges at the back of my head, pulling and aching from my head and chest incision and sore areas where the leads where tunnelled or are positioned. 

I am thinking that once I have the surgical staples removed, hopefully some of the discomfort will ease and then maybe I can focus on the benefits I will hopefully get from the implant.

I also am still having some issues with the numbness of my right ear. The top and bottom of the ear more or less feel normal but the middle of the outside is numb and also gets strange pulling pain. It's so annoying!! The area behind the ear when the lead is tunnelled is also the same. It doesn't help that that is where the dressing has to stick to cover the incision of my head. I am having trouble with this dressing as the different type is ensuring the blisters are drying up but it just doesn't stick for long! I am changing it every 2 days. 

And my hair is so frustrating....it's still caked in iodine and this is now pulling on my head at the back. Guess it's like dreadlocks!!! I've done my best to comb it out but really it needs a good wash, but with this dressing not being stick properly and do not waterproof, guess I'm gonna have to wait a while!! Grrrrrr!

Here are some new incision photos.....7 and 8 days on.

You can see this stomach incision is still very swollen and weird shaped. 

This is a photo looking upward so you can see the overhang at the top. I think that feels like my battery there, but hard to tell as its all very tender to touch!