Day 2 - getting programmed

After barely having any sleep and giving into having strong pain killers overnight (10mg of oramorph) I was still in a massive amount of pain. I was barely going to the toilet but when I did I still needed someone to help me get out of the bed.

I had a little bit of toast that morning, as it was the easiest thing to feed to myself whilst lying down. Even sitting up using the bed to support me was too much. My right shoulder/arm is having to be rested against a pillow to support it from falling back too far. I eventually had to double the dose of oramorph to try and get past the amount of pain I was in!

The nurse still check checking the strength in my grip and pushing of my feet. I was so sure that I gripped her hands really strong, but she seemed to suggest that I still had weakness to the right side. Surely that is because my chest hurts and that muscle is tensed when I grip her hands!!!!!

During the morning the wards got changed round and the ladies all went to the men's side, as there were more of us. They also needed to make space for the day patients coming in to use the day unit. 

Later on that morning, Mike from St Jude's, came to see me to get my stimulator switched on. It was nice to see a face I knew and I got to quiz him about what the equipment taken out was like. He said the battery was pretty grim and covered with a gross amount of tissue. He likened it to an episode of Dr Who he had seen once, where silicon stuff grew on everything it touched!! This made me laugh. I like the gorey details! 

After forgetting the my battery was no longer in my abdomen and finding the precise place to put the wand, we got it all connected and began to set some programs. He explained how the new burst programs work, where the frequency is working but without me feeling the sensations. However, to set them up I have to be able to feel them to say how they feel. So I've got 5 programs. Two are normal 'tonic' settings and then he has created a 'burst' setting to match each of these. He has also created a program that uses both leads at the same time but on the burst setting.  We turned the stimulator off for now, as it obviously needs chance to settle. 

Mike discussed how he feels having both leads should give us more chance to find the right settings to help me, especially due to the fact that I unusually have to work on such low frequencies. Even when creating the programs he noted how the intense feeling came in so quickly to me compared to other patients. He did also say he remembers my consultant stating how little fascia fat I had in my neck, meaning there isn't any way to put the lead any further back off the nerve. 

He also mentioned how unsupportive my work seem to be, as I apologising for having to contact him about recovery time previously. This seems to be a recurring factor! It's so screamingly obvious! 

Mike explained that I would see him again in about 4 weeks time and then went over to see 'Chloe', who had had the same surgery but for Cluster headaches. I could hear him saying thugs I had said to him to reassure her, such as how much more painful this time round was etc. 

It was interesting to hear that when she was being programmed she described things very similarly to how I do. 

At this time I realised that I do have a positive attitude towards all this. I don't seem to panic about what has happened or how it is. Comparing myself to someone in a similar boat, I am strong and laid back and taking things as they come. This made my feel more like I am in control.

The rest of the day kind of passed by. I asked a nurse to help me change into my pjs, as the gown is so irritating. She was great and did so whilst I lay down. 

Chloe came over to chat to me. For both of us, it was refreshing to discuss our conditions, the surgery and the hospital. She was definitely a worrier and I ended up being her reassurance and support but that felt good. She mentioned that her chest battery had not secured in place for her very first surgery and she had to have revision before this, as her third, stimulator surgery. She also said that our consultant had learnt that making a deeper pocket for it was better, so I'm hoping that is the case for me too.

Here are a few photos. Nothing much to see, as they have kept it all completely covered up.

I had a few visitors later that day, which really helped as I was beginning to feel pretty dizzy and a bit sick. I barely ate any tea but then I had just had a hot chocolate from Costa! Mmmmmm!

I didn't get much sleep but the fuzzy feeling didn't really subside. 

I didn't really think much of it and still hoped I was doing ok. 

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.

Tomorrow......😳

The date has arrived and has truly felt like a looooonnnng time coming. Can't believe I have actually made it through a term of work as well as everything else to be able to get to this point.

I have spent half term seeing as many friends and family as possible and spending time quality time in the sun, before I am cooped up inside for the longest time.

I have also enjoyed a little bit of wedding planning, looking at venues, discussing this with my fiancé and even getting my dress!!! 👰🏽 We did initially think maybe October to get married so I was using the time I don't have sore wounds etc to get this part sorted and ready. However we are thinking now it is better to have longer to prepare and less rush for me to recover from this, knowing how long it took last time. Then the pressure is off. Anyway, with the dress sorted it feels real and gives me something exciting to focus on and look forward to.

It is 9.15pm so in 13 hours I will be at the hospital begin prepared for me operation and discuijng the surgery. I need to make sure that I make it clear that although I am having to make the decision to have the battery placed in my chest, I want to pushed further down, apparently in a pocket (as the pre op nurse suggested) so that it is less visible as it will be less close to the surface. 

I am nervous about the surgery but more about the after effects that it leaves me with. Being sick when your stomach muscles have been messed with on the inside is not fun! I am presuming that this area will hurt more as they are taking about the battery and wires and the parts that have scarred in place will need cutting out. This seems worse than pushing them through to me.

I also don't really know if they will be needing to cut my hair again to add another/replace the lead. And I really hope they cut out the lumpy part of my chest scar when they put the battery there!

I feel that I don't have all these answers and won't until tomorrow. I hate that! I am sure it saves them time as they haven't had to create a further appointment to discuss these things but for me it means I don't know the plan fully until I get there. I don't like this kind of surprise!

I also need to make sure that I just keep remembering what the pre op nurse said about not being discharged from hospital until I feel ready. And if I am still feeling sick then I am not ready to go home! I guess as my fiancé will be at work, then I can't spend the day alone after an operation like that. That should then mean I am not pushed out and sent home without feeling ready.

Now I am packed (I think) and ready to go. I know the morning will drag, as I am bound to wake early and then by brain will go into thinking overdrive, so I will stay wide awake! 

So....wish me luck!

Of course I will update with photos and details when I can.

Plan after plan

It seems that I am continually making plans for how I will cope with work, the wait for the operation and the stress in my life. 

I have lost count at how many different plans I have concocted and then revamped, altered, pushed aside, but here I am. I am still at work. I've made 3 weeks so far but all that is keeping me going in the fact that there can't be long left until my operation. I am enjoying some aspects of being back at work, seeing all my old classes. They honestly have missed me and it truly shows with all the smiles, hugs and lovely conversations. The same can be said for the parents too.

Then there is the added stress that is coming from above at work. I have recently been issued a formal warning for my attendance as I hit two of the three triggers. This lead to a formal meeting where some adjustments have been put in place and it gave me the chance to fully explain my condition and the surgery. However, it is still clear that some adjustments are not being stuck to by members of staff who obviously don't feel they are important enough. 

Within all this, I am experiencing a lot more discomfort from my wire and battery sites. They pull and hurt when I stretch or carry heavy items, like shopping bags. It feels like a constant bruise over my ribs.

You can now clearly see the battery as it has been pushed so far forward and it now flips really easily if I forget to hold my hand there when I bend down or forwards. 

Here are a few more updates photos, perhaps the last ones before my next surgery. 

Here you can see the extension connection of the wires below my still red and raised scar on my chest. 

I am hoping they will cut this part out when they cut it back open again, as that is where I've decided is best to have the battery to avoid the same issues with the wire. I would like it quite far down though so it isn't where I have no extra flesh to conceal it. 

You can now see the wire path much more clearly than ever before. Losing weight has caused this issue. It has also left me with no body fat over my ribs, so my bra now runs on the wire. Which is very uncomfortable. 

The loop of excess wire at the back of my head is much more prominent now. It itches still and protrudes a lot, making it even harder to scratch. 

So now all I need is this operation. So many added issues will be resolved, but I truly hope the head pain can get under control this time round. 

I have plans to help me cope with work and the stress. I have plans to move forward with my own life. I just need this to work out as hoped so that I don't have to create any more plans that revolve around unexpected surgery. 

Just my luck.........!!!!

So much has been going on that its taken me a while to be able to add this post.

But on 9th February I was involved in yet another car accident!!!! I must attract these foolish drivers to crash into me, as yet again this was not my fault. Luckily the bloke has admitted fault but it was pretty clear that he was to blame. He cut across two lanes of traffic from a side road, and crashed into my driver's side car door, scraping down the while of the right hand side by the time I had emergency stopped! 

Anyway, this is such a huge set back. I have again got whiplash as well as a strained wrist, according to the doctors. I feel so achey and stiff and want to be able to take my head off just to rest it. My head pain has increased and my neck is very tender and sore to touch. My shoulder muscles are tight and tense.

On top of this I had an email from work saying that they have got information about my further surgery. How?? I can't believe that it's ok to discuss someone's private medical information without them knowing!!!!! They said the surgery wait is 6-8 months too!!!! This is far too long for me to cope with. I really don't know what I am going to do if I have to wait for most of this year just to get back on track and hope I can get some of my life back and begin to move forward.

I've emailed my consultants secretary, which is where my work got this information from, so I'll just have to see what they reply.

I truly hope I get some good news. I need it!!!

Trying to hold on!

So the same old things continue.

I think the pain I am experiencing in my abdomen is happening more often, yet is very sporadic. I can't make it hurt but it seems to happen most days. Sometimes the stunning pain has literally taken my breath away and often shocks me. Atother  times it constantly feels uncomfortable, almost like a minor stitch feels. 

I am pretty sure it is related my build up of muscle. If it is, it's the transversus abdominus muscle, which is more or less the love handle muscle that meets the six pack area of the central abdominal area. I  can feel that this muscle is very strong and can push behind the battery easily. If I feel the opposite sides muscle, it is used constantly for walking, moving, bending...everything! Therefore it makes sense that is happens so often and also matches with the strength I have gained. I believe that if the battery hadn't moved back in February, then maybe this wouldn't have happened, as I bet that it is in the slightly wrong place.

My head pain has been awful for the past couple of weeks. Everyday has been higher pain levels and I wake up knowing that the pain is there, when mostly I can wake and not realise until I am up and on my feet.

I am using my stim programs a lot, despite the fact that they aren't helping much. I still believe that if I use it when the pain is unbearable (when I don't know what to do with myself) then I am distracted enough for it to calm to a more manageable pain level, although this is still high.

My anxiety and stress levels are still pretty high. I am always on the moderate to severe level on the questionnaire. I believe it is very much work related that has just impacted on my everyday life too. 

To add to this stress, I had an email last Thursday from my Head to say that my role would now change to PPA cover. This was only following an email to say about the new pain I was experiencing and that I was going to stay off work until I saw my consultant at the end of the month. In total, I would be off for 8 weeks! I wasn't consulted about this at all and it turns out that people, including the children and parents, found out before even I did. And it wasn't made clear that this change was for the rest of the academic year, meaning I won't get my class back! Ever!! 

I am obviously devastated about this, even though it may seem this is the best thing for the class. It would have helped to be told personally, even if I couldn't have changed the decision. 

I feel like I am being pushed out of my job! This, of course, is a massive stress to add to how I already felt.

The issues seem overwhelming.

I am now attending a 6 week course on managing long term health conditions the wellbeing services thy are supporting me with my mental health issues. This may help me see things in a different way. I would like to think that I will be able to se work as 'work' not a reflection of me, my intelligence, my achievement, my life or who I am!

I need to find a way to manage my feeling about all of this. It has made me an angry person! A person who sees the worst constantly and is in a constant battle.

My health can't change if I don't make a change. I don't know quite what that is but I've got to do something.

Currently I can't think of that plan until i know the plan to help my ON and added issues from the surgery a year ago. I see my consultant on 27th January, so 8 guess my fate is awaiting that response.

One supportive thing that I have managed to track down in my GP. Although she can't help with my new issues and states that honestly but empathetically. She always understands my problems and listens to them. She cares. And I know that whatever i need from her, that is in her control, I will get and I appreciate that massively.

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!! 

Answers to my questions....

My consultant called late yesterday evening and I have now had chance to ask some of the many questions I have about the stimulator surgery.

I only asked the most pressing questions, as I felt I would seem utterly crazy if I asked every single one. Some i will just find out when he discusses the surgery and recovery next Thursday on my surgery day.

 

Question #1

Do I have a choice where the battery is placed?

I explained that I don't think I can cope with it in my chest/clavicle area, and after losing almost 2 stone and putting on a lot of muscle, I felt I don't have any space there anyway! 

He agreed and suggested having the battery in the abdomen. I am happy with that, as it can be covered with clothes and won't be so bad if it does stick out slightly. He says he will need to get an extension was to do it, but it won't be a problem. 

Yay! So glad I have got past that issue.

Question #2

Will I be under sedation of general anaesthetic for the surgery?

I will be under general the whole time.

That's good with me, as I just didn't want to be under sedation for the whole thing. Although I must make sure I mention that I had a reaction to it when I had my tonsils out in Febuary. 

Question #3

Will my hair need to be shaved?

Apparently he will need to shave a small area just behind the ear!!!

Aaaaasahhhh! No way! Don't think I expected that. I know my hair will cover it and it won't be a total undercut but I really don't want to spend years regrowing my hair. I've spent long enough getting it to the length it is now! 

Question #4

How long is the stay in hospital?

Just out of interest I wanted to see what he said about this...he said 1 night. Well, I just moved on from that as I know that I'm in 2 nights now anyway.

Question #5

How long will I need off work for recovery?

He said usually 2-4 weeks. I reminded him that I was a primary school teacher and that I can't do less than 100% of my job when I am there. He said I could take a month off!

I know he ALWAYS under estimates the time I need off work to be able to work at 100 miles an hour with 30 kids all day long....so I'm looking at after Christmas realistically, I guess. I will definitely need a phased return too tho, as I can't contemplate going from this to a 50-60 hour week. 

Overall I'm soooooo glad that he called to be able to answer these most pressing questions. I feel that I can now prepare myself for the operation, knowing the things I NEED to know! I know most seem to be about vanity and how I will look, but I need to live with this! 

So, now it's onto planning the shopping and ensuring there will be things in the fridge/freezer that can just be put in the oven, as I'm not going to be cooking for a while. I am also making a delicious cake and freezing it, so that it can just be defrosted and the buttercream put in the middle. So when I am home after being in hospital....voila....instant cake!! And cake makes me happy!!!!! 

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.