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! 

Getting there

It's now been a month since my operation and the scars are healing well.

My stomach scar is looking less and less odd so I'm hoping it will sort itself out fully in time. It is still very tender and I can't do up trousers properly as the waist band is on top of this area. The odd twisty feeling I get when standing or sitting up is now getting less.

My chest scar has always looked good but is still pretty tender and the muscle underneath is still fairly sore.

My head scar is still raised but the actual scar is barely noticeable! The skin on the raised area and to the right, up to behind my ear, is still partially numb and doesn't have normal feeling. 

I now turn the stimulator on when I wake up and turn it off when I go to bed. I do intend to try it overnight to see if I sleep better, as I am struggling to get to sleep and sleep all the way through the night at the moment. 

The turned up version of the 3rd program setting is now not pinching and feels fine. I can feel it more constantly now but not in annoying way. 

I guess I should now give the other programs a go now to see how I feel about them now that they might not be so pinchy!!

I am now switched on....

The past 3 days I have finally had the courage to turn the implant on!

It's strange but not horrid. 

The first program I used, number 3, I seemed to get used to within a few minutes, so I turned it up, but then couldn't feel that after a little either. Strangely though, I could feel it more if I tilted my head to the right, rested my head against the sofa or the oddest one, had the wand and remote connected to the battery! 

Today I tried a different program, number 5, but within a coule of minutes I had to change it, as it was too sharp despite being on the lowest level. I changed it to program 4, which is a more 'tappy' but again I have got used to over a short while and then barely feel it.

I am not sure yet how well it is helping with the ON pain, as with all the other pain and recovery, I don't know that I'm experiencing higher levelled ON pain . And the lower level constant pain I feel seems masked by the stiffness and surgery discomfort that I am still feeling.

The incisions though are looking a lot better. The chest one looks amazing and I can tell will eventually be barely noticeable. The one at the back of my head is still raised but is neat and I still have numbness between it and my war. My stomach incision is neat but still puckered and odd shaped. It might be getting slightly better but it's hard to tell' 

Chest

Head

Stomach

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!!