Day 5 - another blow 😔

The day started out hopeful. I was immediately given IV paracetamol first thing early in the morning. I thought I'll have this, eat a little something and then have a little bottom half shower to freshen up. I felt confident that this would help, as I had had my pain lowered this way after other surgeries. 

I waited until after 9am and up I got to go to my personal bathroom! It was a wet room so I knew it would be manageable. I managed to go to the toilet ok and brush my teeth without the new sharp, pulling pain rearing its head. So, I sideled over to the shower area and WHAM!!! The moment I lift the shower out of the holder the pain hits me. I somehow manage through on and off severe pain, which I would say was a level 9 out of 10, to wash my bottom half, dry myself and get my pjs back on. I struggle back to my bed, still with lancing pain stopping me in my tracks as I go. I stop at the end on the bed and the tears begin. It honestly hurts more than I have know before!! I can't stop it and it's so worrying. I get myself, somehow, into bed and press the call button for a nurse. By this time I am in floods of tears and can't control them. Whilst waiting for someone to come, the pain gets under control and my tears begin to stop. After 15 minutes an HCA arrived and I explain what has happened, they go off to tell the nurse. 

Then, not long after this another neurosurgeon, the F2 I saw on the IR ward and a registrar came in to see me. It took me a while to explain it, and I said it was a pulling, sharp pain, but I now realise that before they hadn't realised that this was not my usual ON pain, as they asked about me trying my stim and when it was switched on etc. Then the neuro registrar stated to the others that they needed to ensure it was made clear that this was a NEW pain! He asked me specifically where the pain was, so I said it is right on the top of my head and that my usual pain was lower, at the back, or stabbing on the right side, temple area. He asked where it travelled to, and although I said I wasn't sure I did say it was all right sided.

He agreed with his team that he wanted pain management to come and see me today and that he would contact Mr Patel, my consultant, to get advise from him. 

I felt that I had finally managed to explain the pain in the best way I could and tat eventually they realised what I was saying. 

By now, the incision pains were not too bad. I could turn in bed and lie on both sides for a period of time. I was beginning to get up easier than before.

However, the team were concerned that I wasn't getting up enough, risking blood clots etc. They also suggested that they would have to inject me with anti coagulant, if i didn't get up enough. I asked how often they want me to get up and they said every 3 hours...and not just to the bathroom but walking around the ward! So I agreed I would do that! They also made me put the TED stockings back on, to ensure there was less risk. 

At about 11.30am, I decided to go for a little walk. I made it to the wall opposite my room and there I had to rest. I decided to come back to my room before it got too much. 

Not long later, my nurse came in to give me pain relief. As the IV paracetamol hadn't really made much difference, we decided to go back to oral paracetamol with ibuprofen, and an anti sickness just to keep me covered. I still felt strange and not quite right, almost like being really full, although I haven't eaten much.

She also discussed me moving about and I told her how far I had managed. She said to set myself a goal, so we made a date for later on for her to help me get further down the corridor to the end window. 

At 1.30pm I decided to go for it myself. Today I was determined to prove I could manage so I could get home. I made it to the window!! Relief!! But I had to wait there for a while before returning. It was a real effort and my pain kept threatening to come on but if I kept my head straight, it didn't seem to be too bad. More like tingling and a slight pull.

My friend came to visit after the protected lunch time had ended, so I when the nurse came in to go for a walk, I did tell her that I had already been. 

At about 3pm, the Physio finally arrived. She discussed my home needs, such as stairs and where my toilet is and asked about my job. 

We decided to go to the main staircase for me to practise, so it was a more realistic flight, rather than the steeper stairs in the gym, as I would have to keep turning round. 

They took me out of the ward, to the stairs, in a wheelchair. Going up the stairs was ok. Once I got going, it was easy enough. It was the coming back down that was difficult. By now, I knew that looking down could make my head pain worse. They suggested looking forwards and feeling the edge with my feet. When I reminded them how slim the treads are on my home stairs, they asked me to turn my feet and go down putting both feet on each stair, ensuring my heels touched the back. It was slow and an effort but I did it. 

They were happy that I could manage this at home and I felt confident enough. I had proved even more that I could possible get home today!!

The Physio still wanted me to see pain management before going home.

So, in my eyes I had now moved around safely and manage stairs. I was going to the toilet and not feeling too sick and eating at meals. I thought this would be it. I hoped I was not going home to get on with recovering.

The nurse came in to discuss meds. We came up with a plan to take home some codeine and just to take half alongside the anti sickness. She thought this was the least vicious of the pain relief and although I had taken it and been sick before, half would be such a low dose, I might cope with it. I was going to have a think and call her back before going off shift. 

BUT...at about 7pm, Hazel the neuro F2 who had seen me a few times came back in to see me. I didn't expect this so late, I didn't know they would still be here!

She came in and closed the door. Although they always do this for privacy, this time felt different. 

She basically explained that they hadn't been able to get hold of Mr Patel all day but despite that, the neuro registrar who saw me this morning believes the pain I am experiencing is more nerve pain, that has happened since the surgery. They do not know if this is temporary or not and may not be able to know. She reminded me that nerve pain would not be relieved by pain killers, so therefore anything I have taken hasn't worked for that reason. Even though pain management hadn't managed to get to me, they would undoubtably suggest something like gabapentin, which can take weeks to begin to work, so there isn't much that can be done for now! 

They hope that the stimulator could reach to the point of the pain to also help it, but obviously they don't know. 

We discussed what to do about staying in hospital. She said they would want to keep me in until at least Monday, so that I could see my consultant and the pain management team. However, if I thought I could manage at home, she would be ok with me going but they can't hold my bed open so if I couldn't cope I would have to return via A&E. She was adamant that one of the neuro team, maybe Mr Patel, would phone me on Monday to discuss all this and decide how to move forward. She gave me the ward number to bother them, if I hadn't been contacted in Monday. She was very definite that I needed to speak to them if I was to go home.

I explained that going home at the weekend meant someone was at home with me, whereas in the week I would be on my own. She agreed she was happy for me to go home but reiterated the plan if I couldn't manage.

I apologised for being an annoying patient and she said that if I didn't say, they would never know. And although there is lots of success with these operations the minority of patients with some form of complication, isn't as much of a minority as you would think. They learn from knowing about these issues, so are glad they are aware. This made me feel better, in that I wasn't just hogging a bed, or being a wimp, or making a fuss.

Once she left, I don't know how I felt. I'm not sure it sank in. It was just facts to me for a while.

I phoned my fiancé, as he had been there before Hazel arrived, but got called in to work. I shared this with him, and I remember using the words 'gone wrong' and he immediately replied that it might not be true! I reworded it to something less permanent, but I can't remember what it was. 

It began to sink in that I could be worse from now on. I could have more pain to deal with and this surgery might not manage that. I'm still in a bit of denial. That can't be true, surely! That just can't happen. 

Second nerve stimulator has been implanted!

So....it's done!

This time was very brutal and rough, much worse than the first time round.

The day started off with my fiancé and I turning up to the hospital at 10.30am, waiting a while to be checked in and then half an hour later being called through to check stats, weight, medical history etc. It was now I was told that the operation may not go ahead, due to there not being enough beds!!!!! Apparently if it's a day case or you are first on the list you will be ok. I was third!! I was so unhappy and panicky. I can not wait any longer for this. It will ruin everything!!

Eventually my consultant came through and before we could discuss anything I told him of my panic. He made me feel less anxious by saying he was hopeful and was going to press a few buttons after we had spoken.

He asked where we had left things last and I reminded him of the choice of place for battery and that I preferred the chest, so as to avoid many of the same issues. I asked if he could make it low and use the horrible bumpy scar, but he looked and didn't think he would be able to. Obviously I was disappointed but I accepted it. At this point I just wanted it done and over with!! He explained that I am having two leads put in the head, and the old one removed. These leads will both have the burst program that can't be felt, as we are using the new prodigy stimulator and that one lead is similar with straight contacts on it but the other has the contacts 360 degrees around the lead, meaning that the frequency can spread easier and perhaps not be so intense. 

He then marked where my bra strap sits to avoid this area.

I also shared with him the issues about work and he agreed that there isn't much support for me and that they have been rather pushy.

He then went off to sort things out.

After what felt like ages later, but it was probably 15 minutes, the nurse came back to say it was good news and it would go ahead. I then spoke to the anaesthetist. He was very understanding about the sickness issue I have had previously and explained that there are 5 different types of anaesthetic that work indifferent ways, but only 3 can be used during the procedure. He said I hold all the risk factors for potential sickness from anaesthetic, as they are being young, fit and a non smoker. 

Anyway, I felt listened to and in good hands. So I got into my gown and TED stockings and it wasn't long before I walked out the room, round the corner and straight into theatre. I think it was about 2pm.

I climbed up onto the stretcher, as they untied the gown and stuck the sticky pads on me to monitor heart rate etc. They then put the cannula in the back of my hand. The anaesthetist explained that he won't use gas to keep me under during the operation, as that is one part that can make people sick. He kept putting stuff through the cannula, I felt woozy but not gone. Then he attached a bag of white liquid to me saying I'll be going off very soon. It seemed quite a while that I thought I'm not asleep for, but then I must have gone!!!!

Next thing I know, I'm back in a little room with oxygen on my face. I really struggled to come round and think I tried 4 or 5 times before I could keep my eyes open. Eventually I asked the time, which was 5.20pm!! Where did that time go?? There must be things I can't remember because that is far too long!!!!

They seemed to be fussy a lot about my obs and eventually I heard the nurse say that I has weakness to one side. She said it could just be because of the anaesthetic but kept checking the pulse on my feet, marking crosses on my TED stockings to be able to check again later.

After a while of going in and out, I heard someone say that my fiancé was outside pacing about, so they let him in to see me. Usually they wouldn't allow visitors in the recovery area but he stayed until I was ready to transfer to a ward. I was in recovery for quite a while, being given a lot of drugs through my cannula. I tried to go to the toilet on a bed pan, but it isn't easy to go whilst lying down.

At some point my consultant and another member of the team came in to say that surgery all went well and they are pleased with it. He mentioned that they did use my old scar on my chest, so I'm really hoping that that will eventually be much less noticeable and neater.

But the pain!!!!!! My chest area, where the battery has now been placed, was super painful and heavy. My head felt pretty numb and massive. My abdomen didn't feel too bad but was obviously painful.

I ended up in IR (Itermittent radiology) as that was the only place there was a bed for me. I was the first one there but more people, who had had a range of different operations, arrived during the evening. 

I realised that this time round I didn't feel sick. This was such a great feeling to know that I would have to go through physically being sick whilst being in so much pain. 

I managed to eat quarter of a sandwich, which I didn't expect and made me have hope that the sickness wasn't going to happen this time round.

Later on in the evening, I needed the toilet but just didn't feel strong enough to get up. They brought me a bed pan, but I just couldn't go....AGAIN! They then talked about having to have a catheter if I didn't go, so I asked them to help me get up to go to the toilet. Getting up was really painful. My head was so painful and my shoulder seemed to pull back on my chest meaning I had to hold my arm across my body, as if it was broken. Despite all this, I managed to go to the toilet and getting back into bed was easier than the getting up. 

I had a difficult night, trying to sleep with pain and all the noise. I think I had maybe two half hour sleeps. During the night, I realised that there was a patient on the ward who had cluster headaches and had had the same operation to help with that pain.

So, with the operation over, now it's just time to recover. 

I feel hope and relief.

Operation is in sight....

It's been a roller coaster of plans and reorganisation recently but finally I think I have a date that will actually go ahead to have my stimulator implant taken out and a new type reimplanted.

Initially I was given the 23rd May as my date. It then needed my pre op to be checked that I was ok to have the op. Then the next delay was waiting to see if Mike, the rep from St Judes, was available to attend on that date. In the end I emailed him to see if he was free. He said he was booked in! 

Then the next thing I hear is that I have been bumped and someone else needs my surgery time for a more urgent issue. I understand but it is so frustrating. It's like I wasn't to have that date anyway as I had no paperwork and it was as if they were finding all sorts of things to delay getting it finalised.

Anyway, I have now got the paperwork and go ahead for 6th June. Phew! Feels more real now.

In a way this date is better as I get my half term before the op, meaning I have a week off work to get my head around it all and prepare myself for the surgery.

Today I told my work about this date and created plan to return for a day or half day at the end of term, so that I don't go over the attendance triggers. Hopefully this will be manageable, as I will know that I won't be going back for a while as I will have the summer holidays to continue my recovery. A day or half day at the end of the school year won't be much either. DVD. Party. Goodbye assembly. I think I can cope with that to ensure I don't have to have a formal meeting and chance losing my job.

It's so wrong that I have to play it this way, but that goes to show how inconsiderate the workplace is for long term health conditions. So little understanding and huge lack of empathy to ensure I am looked after properly.

At the moment I am in huge levels of pain. The last 2 days have been worse than the have been for a long time. I have been extremely dizzy and had to stop in the middle of lessons. The pain is so bad I have no patience and lose my concentration and temper a lot easier. Then this makes it all worse too. Nothing has helped so I just have to get through the pain. I can't take time off work now, as I can't have any days off as they will then count towards by attendance and then I will trigger the formal meeting earlier! I don't want that. My recovery from the op is more important right now.

So....6 more days of work before the op. That's how I am seeing it. That's how I'm going to get through it.

Update on scars

Apart from still suffering from the battery flipping and the wires stabbing, most of the scars are looking really good.

My abdomen scar is fantastic, especially remembering how unhappy I was originally. It is barely noticeable now and really flat.

I guess the rosehip oil is doing a great job here!

My chest scar is still the same. The raised keloid part is still just as raised. It still itches and hurts a lot. It is often really itchy but due to it being so raised, it hurts to itch it. The other half though looks really flat and barely noticeable. How annoying!

My head scar is great and has always been very thin but the loop of wire is getting more obvious and sticks out more. It too is often itchy and sore. 

It really difficult to get an accurate photo but you can see here that the loop of wire is obvious and it goes directly under either side of the original scar.

So, I'm not sure what the future holds with all these issues.

I still haven't heard back from my consultant, although the St Jude's rep called a week ago as he had been told there was an issue with the battery. I explained the problem with it tilting forwards and he of course said I would need to see Mr Patel, but that he felt from experience I may need to have the battery replaced slightly. I really don't want another operation!!!!!!! But I can't put up with this happening for much longer. The other day I bent over to put something away on a drawer and it flipped 90 degrees forward and got stuck. I had to push it back in! Utterly hideous feeling and it happens more and more when I bend over or put my right leg up. So unfair!!!!!

Update: 14th April 2015

I have had a letter through with a date for a neurosurgery follow up appointment, but I have no idea if that is to see Mile from St Jude's to reprogram the stimulator or to actually see Mr Patel about the battery and wire issues. I guess I'll just see when I go. It's not until 13th May, so I've got a little while to wait now. That's annoying but at least I'll be back to full time work by then, so will have truly tested it all out properly! 

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!!

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.

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!

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

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!

Incision photos

Here are some photos of my incisions.

First, is my back of head. This is 2 days post op.

I have developed a small blister at the bottom. Apparently this is due to the dressing used, so the nurse applied a slightly different and smaller one!

I also have still got a numb right ear and side of face but have been told the feeling will eventually come back. Think it is a bit more normal today but not back to normal.

Here is my chest incision, 3 days post op.

Not sure why they didn't use their drawn on line to make the incision but too late now. 

You can just make out the leads coming from my neck towards the incision.

It looks fine but I did get a sore patch on the edge of the dressing, so I've made sure that the new dressing is at a different angle.

You can see the sore patch at the bottom of the photo.

Here is my stomach incision, 3 days post op.

This is the only one I'm unhappy about at the moment, as it's weirdly indented. I'm hoping this is just because of swelling and the surgical staples pulling the skin in. 

It's more obvious in this photo....

Pretty unsightly at the moment!!

Also I am still being sick!!!! Yesterday I managed to eat quarter of a pizza but soon afterwards it all came back up! I was then too afraid to take the morphine I was given so went to bed just on paracetamol. To be honest, I had a decent night's sleep! I only woke up to change position. Slept from 12 until 9am!! :)

The date is here!!!

So at the hospital I was shown to my room and immediately everything was whirring...people in and out, getting things underway, non stop!

My consultant came in first, and explained a few things, drew marks on my scalp where my worst ON pain is, then on my tummy where the top of my jeans are and the bottom of my ribs. He explained he didn't want to put it too high up, because it would push against my ribs when I bend down. We also asked again why the date was changed...and now it makes much more sense. Apparently the kit needed for the implant hadn't all arrived and also other people having the same op that day all had to be cancelled. Therefore, it could never have been 6th November anyway!!!! Feel better knowing that.

Then the anaesthetist arrives. He talks me through his part and after I mention being sick after general anaesthetic when i had a tonsillectomy, he explains that he will give me some anti sickness drugs as I come round to avoid me being sick.

Then I give my food order, answer a thousand medical questions and am admitted by the nurse. I am secretly very happy when I have to tell her my weight!!! 12 stone 9 sounds good!! 

After all this I think that's it...but then Mike, the rep from St Jude's (the company that provide the stimulator implant) comes in the room. Not only would he be in theatre during the operation to ensure it all works as it should, but he spent at least half an hour showing me and my partner the battery, leads and charging kit!

This really was interesting, although was a lot to take it at this time! 

I was surprised at how rubbery and flexible to lead was and that each little metal square is a separate contact to create frequency from. The battery is really small and light! It made me feel educated and knowledgable enough to know what was going to happen and what everything feels like, as well as looks like!

I wish I had shown something for scale in this photo, but the battery is about the size of a small matchbox but not as thick!

At 2.15pm I am collected to go down to theatre. And so the next chapter begins....

Operation complete

It's all over!!!

I actually made it...finally. The op is done and I now have my stimulator implanted.

I have to say the first day was rough!!!

After coming round in recovery, apparently I was in theatre for about an hour and a half, I was in so much pain from my abdomen! Every breathe was hard and I was moaning in pain. I maxed out the amount of morpheme they could give me (16mg, I think) and eventually it settled and I could cope! But the problem then was that I felt sick. I mentioned this in recovery but as I'd already been in there for 2 hours, I think they just wanted me back upstairs in my room! 

I was glad to see my partner again but being sick hurt sooooo much! I had no sick bowl though, so ended up being sick in a carrier bag, with my boyfriend running around trying to find a nurse to get a bowl! But then I used all of those and my boyfriend had to rinse them out so I could continue being sick. Disgusting!! 

Sadly this continued so I didn't get to eat anything!! 

The anti sickness drug they gave me made me ultra dizzy, which was horrid!

The worst part though was getting up to go to the toilet!! Wow!! I couldn't even stand up straight, so shuffled, bent over like an old woman. Then struggled to sit down on the loo!!

Later on I was made to eat some bread & butter so that I could take ibuprofen. I immediately was sick after going to the toilet. Horrid! 

After an appealing night's sleep (think I only got 2 hours in one chunk) I woke to a different painkiller, oramorph, that seems to work for me! I managed breakfast and so feel a lot more myself. 

Then the St Jude's rep visited to set up my frequency programs.

This was so interesting! It's all working well and the middle of the lead seems to give the best results, which is what would be hoped for. 

I held the wand, which was attached to the control and his PDA so that he could change the intensity and frequencies to find what works best and gives the best coverage. Apparently I seem to prefer high banded frequencies, where the feeling holds for longer and is therefore slower.

I now have 5 frequencies set now, so I can try there over the next 6-8 weeks and see what works and what I like most etc.

This morning, I have also even managed to shower my bottom half, as have dressings everywhere else, and change into pyjamas! 

Feeling a lot better!! 

Seems like it's going ahead...this time!!

I am now getting to the last few days before the op, so am getting things prepared and doing things for the last time before I become a 'cyborg'! 

So went to the gym for the last time today! Am now at my fittest, slimmest and most toned EVER...so am a bit annoyed that I know I'm going to lose some of this hard work and have to get to this point again once I've recovered! 

I have also booked a haircut for Wednesday (day before the op) so that I know my hair is in good condition and won't need cutting for a whole afterqard, so I have time to heal! Also my lovely hairdresser has left, so am checking out a new one and filing her in on my op....and shaved hair nightmare!!!

I am starting to pack my bag and think what I need to take or have done before I go into hospital! 

It's all a bit surreal but I don't think it will truly hit me into I've actually had it done and by then I'll just have to cope with the aftermath!!!

Now, to make sure my class of 7-8 year olds understand!

So, I have been hunting on the Internet for a video that would explain my operation easily for children to understand. I am a primary school teacher and have never kept any of my operations secret from my year 3 class, but I really want them to understand this one. I feel it's important, not only for them to understand what is going to happen to me and why I will be off work, but also so that they gain knowledge of medical advances, perhaps for their future or to interest them for future careers. You never know, I could been teaching a neurosurgeon to be!!

So....this is the best I have found....

http://youtu.be/0fvROhjZ9U4

It's simple and in cartoon, so hopefully not too "disgusting".

I'll let you know soon what they think!! 

Update: 5th June 2014

I spoke to my class about my operation and showed the video today, and their reaction was full of interest. 

Most watched the video all the way through and despite a few 'urgh's, they were really interested in how this worked. 

They asked really sensible questions about how do you change the battery.

Overall, I'm glad I showed them. 

I overheard one child explain it pretty clearly I her mum, despite saying I had "nerd damage"!!! ☺️

A few even wanted me to write down the link so they could show their parents. Bless them.

That's at least few people, in the next generation, who now have a bit of knowledge about this terrible and little understood condition.