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.

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.

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. 

Back to work!!!!

It's only day 2 of being back at work and already I know I can't manage!!!!

I even woke up with head pain this morning and that rarely happens. My head has continued to build in intensity and pressure all day and I literally can't stop the pain, no matter what I do.

I have caused such a scene at work, refusing to teach certain age groups and getting things made as manageable as the role can be....so I need to try and do as much as I can.

I think when I get an operation date, then I will feel like it's actually happening and I can begin to plan how I will make it to that date and what I can cope with having had that worry eased a bit.

UPDATE: 19th April 2016

So I've been back for a week and a half and I thought the pain and panic was beginning to settle and ease. The dull constant head pain is lower but this evening I have had a terrible sharp pressure pain at the top of my neck when I bend my head forwards. 

I can only put this down to the amount I would use this position of my head at work, talking to young children.

I have also had really sharp almost continuous pain around the battery area once again. It has been like this the past 2 days and is really uncomfortable and disconcerting.

I am battling through with work. Part of me wants to prove to myself that I can do this. Time can only tell, but no matter what I am counting down the days until my next operation. It's April now so not too long to make it until May!!

Pre-op done

I haven't updated for a while as I have been trying to get my head straight and work out what I need and want to do about it all.

In the meantime, I was called for my pre op assessment to prepare for the next surgery. I also finally received the letter that also goes to my GP to explain the last consultation visit. It did state that there would be an additional lead put in, as well as a change of battery that would be put in one of the choice areas. I still think i am going for the chest area, as the wire that runs down over my ribs causes so many pain issues and often gets trapped by my bra. 

I am still awaiting a date but the last I heard is that it would be in May sometime, as requested by my consultant. Goes to show that the secretary doesn't know everything and that her meddling in all of this was uncalled for and completely unnecessary. 

Anyway, the pre op only lasts 18 weeks, so that gives it until end of June....but I truly hope it's before then!

So the pre op was interesting, as I got a chance to mention how much the anaesthetic makes me sick and that I have been pushed out of hospital that last two times and then been sick at home. She really listened and am hoping this will be thought about when my admission details are planned. She also understood my issues completely and was sympathetic and interested. It is so unusual for people to have the time to ask and want to know the answers. It felt good. Running through my medical history though really highlighted how healthy I am. How healthy I really should be, if I didn't have this condition. In a way that is great to know but also very frustrating. 

Then she thoroughly checked my heart, breathing and felt my stomach and the battery area. She said she would usually feel people's head and neck but knew this would be painful for me, so didn't do this. 

Apparently I am extremely fit and so didn't need many tests. Just blood pressure, blood test, MRSA swab and weight & height were taken. No ECG needed.

My concern between now and then is work. How will I cope with it? Will it make me worse in terms of pain or with my mental health. I have come so far recently and having a plan and knowing a rough date for it all really helps. I really don't want to go backwards, as I am already staring over with this repeated operation as it is!! 

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!!!