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.

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!!!

Another waiting game

I am feeling a little bit calmer after finally seeing my consultant neurosurgeon at the hospital on Wednesday. It had been a long time coming and I really needed a plan to base the rest of my life decisions around, as sadly this has to come first in all those decisions.

I set out to have a plan and a rough date before I left the appointment, so asked my boyfriend to come along too so that he could battle some of this for me.

So we went in to the room and as always, I was asked how things were. I actually replied that I was struggling, whereas recently I have just grunted to imply things weren't good. 

I explained the new pain issues with my battery area and without looking, he stated that it must be rubbing against my ribs and hip, causing these issues. That this area has a lot of movement and losing weight has changed how it was sitting in the abdomen, meaning it won't be in the same position anymore.

We discussed that the battery needs to be moved and he showed us where the rib area would be and the other choice is in the chest/collarbone area. This will be my choice and I didn't need to decide there and then! Phew!

He said this will be a new battery type, about the same size as the one I have now. He explained again that this will mean I won't feel the stimulation so that other frequencies, that are to strong now, can potentially be used. 

He then asked what was worse, the occipital neuralgia pain or the battery pain. I explained that not being at work helps me control the head pain so at the moment the abdomen pain is more concerning. He mentioned having options of changing battery or also changing the lead. I said to do everything that can or needs to be done to sort all this out. I then asked if it essentially meant taking all this out and starting again and he agreed to that. 

I ensured that I asked when this could be done and apparently Southmead hospital is under constant red alert, so they often don't have enough beds and people's operations get postponed. He knows his waiting list is full up to March and then has annual leave to use up before new tax year, so the earliest date is April. To me that is a long wait feeling like this, but I have no choice.

He then sent me off for immediate X-rays of the whole implant area. I barely had to wait, so was pretty impressed. I was shown through to a little room to change into a gown and this went straight through to the X-ray room. In total I had 5 X-rays of my head, chest, abdomen and pelvis areas. I tried to take a sneaky look at them but only saw the final one they took of my head, straight on view, so that it was clear where the lead was placed. It was so strange to see it in my head! I really wanted to see the abdomen one and wish I had asked. Although this was taken laying down, so it wouldn't have shown how close it is to my ribs or hip, as it is stretched out much more when I'm laying down. 

I'm pretty sure I won't hear anything about the X-ray and that it was for future reference when I eventually get this operation, but at least something was done and it felt more like a REAL plan this time and this helped it to feel that way. 

So I left thinking that meant a new lead and battery in the place if my choice, however my boyfriend saw it as not a change in lead as the new battery would help things to be different. I'm not sure on this, so nearer the time I will need to speak to him to double check the plan if it isn't clear on my following letter. 

Now I need to sort out the stress in my life. Stay calm and be patient.

Can't take much more!!

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

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

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

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

This, again, doesn't help.

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

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

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

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

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

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

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

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

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.

Sharp pains around battery & wires

For the past couple of weeks I have been having severe sharp pains in my abdomen, around the battery site and wires that go over my ribs. 

It was worst when I was running at the gym....it was so bad that I had to stop and was hunched over in pain! 

I have continued feeling this pain on and off randomly and get sharp stabbing pains of this too, that make me jump and wince.

All I can think of is that my stomach muscles are now pushing against the battery & wires and making them move. 

I really need to see my consultant but I have been contacting his NHS secretary since the beginning of December, via phone calls and email, but haven't had a response. I am supposed to see him in the new year, as he said when I saw him at the start of November. This time is truly urgent and I need a plan of action to help me physically and mentally. 

Currently I am stuck. Stuck in the same place I have been many times, over and over, but with work being less understanding or caring and with me more frustrated than ever before! I need to get on with my life, and manage whatever it is I can. I know family is more important than a job but I want to have that opportunity!

Today I have turned off my stimulator to see how I am without it. Mike, the St Jude's rep, suggested this back in November when he saw that I was generally down about it all. Well, all I know is that the stim definitely does something! Today I have exhausted, pressure in the back of my head and far more dizzy. 

At least I know it has been worth it for a little relief. I just need more relief to be able to believe I can control the worse pain better and therefore function when I need to. I also need this added abdomen pain and battery flipping issue to stop!

When will this all end!!??

Not sure of anything much....

Thought it was about time to update on how I am doing pain wise and on stress levels.

It all seems to have calmed down, in both senses, due to not having to cope with work as well as everything else. My pain levels, although I do have off days, seem to have lowered enough to manage. My stress and anxiety is better than it was. I am sure I am not actually 'better' as just not having the unplanned and super stressful work aspect, makes a huge difference. 

I am attempting going back into work in a couple of days' time so we shall see if things are any better for me, I guess.

It all worries me massively, as I don't know what to do with my life!!

I obviously can't really manage my work at the moment, and again, as I am awaiting another operation to sort the battery issue and maybe change to a different battery altogether, then I am again stuck in limbo. Things COULD get better but who knows how much better and what that means for me life.

In the meantime, teaching just gets harder and more ridiculous and unmanageable for healthy, well people, let alone for me! And also I then have the battle of getting helpful support at work but also my own issues with not having a class full time to deal with.

To me, this all just seems to much to manage, especially workout knowing what my future holds in terms of pain and how much I can control that pain.

So, small steps at a time. 

I shall go to work for the last 3 days of term and see how I cope and feel.

I shall see if and what support is offered or changes made to help me cope at work.

I shall wait to see when and what happens in terms of the next operation.

So basically....who knows what the future holds for me, and that's what I HATE!!

UPDATE:

After speaking to the Occuptional Health nurse that visited my workplace back in September to do a work place assessment report, she is suggesting a case conference so that my work can't ignore my situation any longer.

This sounds good to me!! Someone finally appreciates that I am losing the battle with my work, despite how hard I try. She also agreed that it could be a massive part of what is causing my anxiety and stress.

So I've got an OH appointment this week to see the doctor and begin the process. 

Worst pain maybe ever!!

Recently I have truly been suffering.

I've had days where I moan from the pain or pace around because I don't know what to do about it! This is not good!

As I've mentioned, being in severe stress and anxiety is obviously not helping at all! Therefore I have had to make the difficult decision to stay off work for a little while. I didn't want to do that but it's one of the only things I can control that then takes a lot of stress and worry out of my life. It means if I sleep badly, I can lie in in the morning. It means that I don't have so much that other people put on me without understanding how I am feeling. It means that I can have the time to try and sort myself out mentally as well as try to manage my head pain.

I did have one moment though, where I used one of the new programs on my stimulator (the 10hz one) and I think it actually lowered my pain. I was super dizzy and in huge amounts of pain so I sat down and put this program on for 10 minutes or so. I could still feel the crushing head pain at my temples while it was on. But shortly after, and I mean minutes after, it was gone. The usual dull ache was still there but the worst was gone! I had also taken ibuprofen and paracetamol slightly earlier in desperation but surely they can't have helped like that! I'm sure I'll get to try out this program again soon enough.

Waste of time :/

After building myself up to the telephone consultation...writing down notes of what I needed to say...and thinking that I would know the next steps on this ridiculous, long winded, repetitive journey behind, it was all a complete waste of time!

If it wasn't stressful enough to try and arrange cover for my class, make sure they actually turned up, then run around grabbing my belongings to be able to get to my car to have phone signal and some privacy to be able to take the call, it turns out a 45 minute wait is perfectly acceptable!!!!!

I basically waited in my car for 35 minutes before I phoned my consultant's secretary, but I had to leave a message. Being a teacher, I had to go back in to have lunch to allow me enough time to also have everything ready got the afternoon. Whilst sat eating my lunch, they phone and I have to answer the call in a cupboard, to ensure I'm not interrupted!!!

Frustratingly it wasn't MY consultant phoning, but a member of his team AND it turns out to just be a follow up on how the permanent stim is going!

Biting my tongue, I explain that I'm having trouble with the battery moving still and yes, I did try the abdominal belt. I explain that Mike from St Jude's has said there may not be many more settings available to me either and that these aren't helping the worst pain at all, and that these are happening more often. I add in extra bits about the wire stabbing, he suffers it's scar tissue but would need to be seen.

He asks out my work asking for some questions to be answered and how supportive are they, so I reply honestly that they aren't supportive and refuse a lot of reasonable adjustments that are requested.

He also asks if I wanted a telephone consultation. When I say no, he states that it would be best, with what I've said about work and the issues, if I came into see Mr Patel himself.

YES!! That's what I would have expected before now!

A couple of hours later, his secretary calls to make an appointment for 4th November to see him at the hospital. 

So I guess making any plans is again on hold but just for a little bit longer!! I truly hope I get some answers next time. I need this trauma to get sorted the best it can so that I can somehow deal with it and move forward. 

Summer update

It's been a while since I last posted.
Nothing has really changed. I am still having trouble with the battery flipping and the more weight I lose, the easier it catches when I turn over in bed, waking me up and I find that I subconsciously am holding the battery area, as I do when it flips. I am still suffering severely higher pain during my periods, mostly on the second day for a day or up to three. Sometimes this doesn't occur though.
I also seem to get worse pain without rhyme or reason. After a week abroad in which I had a pain free week. I didn't once get out my remote to change programs and didn't really think about it all much. But two days after returning, today I am in so much pain. I tried to ignore it but eventually it started making me feel sick, making me stop what I was doing completely and sit down for half an hour or so. The pain didn't ease, but the sickness did! So I carried on with what I was doing, as I do, to try and take my mind off the pain.
I still don't have a program that helps during this heightened pain.
At the start of the summer holidays, just past the middle of June, I had a voice mail message left from the pain clinic offering a date within a few days to be reprogrammed. As it was my last week of school, things were pretty crazy and on returning the call at lunchtime, I had to leave a message. I asked them to call back to confirm. They never did. I tried calling again but couldn't ever get through at the times I was able to phone. Since then I still haven't heard anything at all!! Disgraceful really!

I have a GP phone call in place next Wednesday lunchtime to get the sick note to allow me to work 3 days a week. Am hoping this all works out, as the GP I saw is not able to call me and has no appointments until 14th September!

So 9 months on, I am glad I have had the permanent stim but now accept that my life won't get back to 'normal', the way it should be. I realise that I need to fight to get appointments and reviews on my progress, as no one seems to bother creating appointments without me asking for them.
So my next step is to see my consultant again to discuss the prospect of another operation to sort out the battery issue, and to get an appointment to be reprogrammed in the hope of finding better program to help with the worse pain levels.

Lack of understanding

Recently it has become more and more evident that so many people, despite all my efforts, just have no understanding about ON!

My friends who ask and listen have a deep knowledge of the effects as well as how my life has changed BUT it seems that my employer doesn't want to do so!

At the moment I am not coping well with full time teaching. It is draining and exhausting, causing me higher pain levels and more persistent dizziness. This happens in class frequently and it is become an issue.

A month ago I mentioned that I needed support to manage full time until the end of the school year, especially with the added expectation of school reports that need to be completed. It has taken until now for someone to get back to me about this and in the meantime I have suffered such stress that I have been in tears almost every day. I even went to a member of senior management and told them this. 

In the meeting I made it clear how unsupported I feel and the response was "but you've had a phased return!" Do they not recognise that this only helps you back to work not to stay at work!

I truly feel that this condition is so hard to get across to people because they are not interested, probably because you look "well". There are other members of staff with other more well known chronic conditions, who get support to manage at school, whilst I get nothing!

Sadly, I know I am going to have to see my GP and get a reduced hours sick note in place as soon as possible, ready for September. This is the only way I can get across that I am not coping!

I guess I might have to admit to myself that I might not ever manage full time teaching again, but I am not ready to totally rule that out just yet! Partly because of routine and stubbornness but also because I don't know what else I would do! 

I am sure that a different job would be more manageable with ON but I just don't know!!!

Update about appointment and issues

I have been so crazy with work since returning to full time after my phased return, so just haven't had the chance to update.

I have found it really demanding and pain levels have most definitely been up high a lot more than before. The stimulator still isn't taking those pain levels down easily and I basically have to see them through.

After seeing my consultant on 6th May, I am basically in a bit of limbo. He was understanding about the battery movement issue, so much better than I expected. He said he may be due to muscles building up behind the battery and pushing it out of place or may have happened anyway. Again, he didn't suggest stopping going to the gym, which I'm glad of as I still feel it helps to strengthen my muscles. I feel much less shoulder and lower back ache than I used to.

He also suggested that I may need to have surgery to place the battery somewhere else. He still agrees that the chest is not the right place for me, but suggested over ribs on the side (which I don't like the thought of, as surely it ca be knocked easily and it will protrude through the skin) or in the buttock area. I did say that I liked where it was, just want to stop it moving and asked about somehow securing it in place. Apparently it can only be secured on side, but he was outwardly talking about using a mesh, like in hernia ops to do this. If I have to have surgery, I hope the latter choice can be done!

For now though, he has asked me to use a waist belt to help keep the battery in place in the hope that it will scar back into place. This one is all I could find that seemed to be what I was after, and that wasn't too tight so I could move in it.

To be honest, I don't use it everyday, as I have clothes that keep it in place. I do wear it when teaching PE particularly, as tracksuit bottoms are lower than my work trousers and so push the battery from the bottom constantly.

I have found that wearing dresses actually doesn't make the issue worse. I thought that having no clothes to hold it in would make the issue worse but actually it seems that clothes are a big part of the problem. They seem to be the thing that pushes the battery and flips it. I have realised that I now seem to bend or squat over in a different way to try and avoid the battery moving though. 

So it is happening less, but due to my changes. If I try to grab the battery, I can still hold the top away from my body, which I shouldn't be able to.

My consultant also agreed that going part time, even temporarily, may be the way to go. He said that the stimulator was never meant to get me back to how I used to me and that it is only a way to manage and reduce the pain, not eliminate it. He said that I am the best judge of what I can manage!!

I therefore, spoke to my work about this but that I don't want to do this until maybe after the summer. I feel it's not fair to my class to make changes in the last term of the school year. This was over 3 weeks ago and I still don't know the plan. 

The first day into work this term I had a break down about the stress and overload of work. I broke down crying at home and couldn't stop. Before half term I had 3 moments at school where I had to stop myself crying due to the stress and pressure. I don't feel myself at the moment. I am not coping well and the pain levels are high more often than they been for about half a year! All I can do is wait and hope that I get the support I need from work. 

It is so wrong that this condition can be so misunderstood and ignored!

Waiting on next appointment.....

So, after a lot of messing around with appointment dates, I have now got a date to be reprogrammed as well as to see my consultant about the battery flipping issues. Not too long to wait, as is the 6th May!!

I really don't know what to expect from the appointment. I just hope he doesn't suggest its something I'll have to put up with, like he has with the other little issues like the ear numbers/pain and the raised scarring. I can not live with this!! I am already becoming used to the awful feeling and the potential for it moving constantly. I have noticed that I often hold my stomach now to help stop the battery moving forward! That is not something I want to do forever!! I have also discovered that my hip seems to hit the bottom of the battery which also pushes it out when I bend forwards. 

I guess I shall just have to wait and see what is suggested.

I am also going to get his opinion on potentially going part time. I know he feels that his patients should be able to continue with their life as before, but my job is so much more stressful than it was 7 years ago and so reducing stress surely reduces more of the triggers for my worse ON pain days.

I'll update after the appointment in a few days time.

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!!

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.

Metal detector experience

So I said I would share my experience of going through the airport security avoiding the metal detectors, as I've been recommended to do.

I have to say the experience at Bristol airport was so easy and I did not feel like I was being annoying at all. I explained to the nearest member of staff and showed my card (which, to be honest, they didn't really care about seeing). They let me past the metal detector, through a gap and a female member of security patted me down. I was then asked to stand on a circle and raise my arms, turning slowly in a circle. I can only guess that this was a different type of scanner but it wasn't really explained, just that I was fine to go in it. The female security then chunked a couple of areas (bra and belt area) and that was that! It took slightly longer than my boyfriend going through normally but overall not too bad!!

It was a lot trickier abroad ....especially as it was Egypt, which is a military airport!! We asked spoken to out Thomson rep on the return transfer and he says he would speak to security for me. 

We joined the queue and before we got to the end he had spoken to the security at the scanner. They made a gap between the luggage X-ray and the metal detector (by lifting and moving the conveyor belt across slightly) so I could just squeeze through the gap. The other side a female member of staff patted me down and that was it! This was very easy and not too much fuss!! 

The problem was that this airport had another security area with more metal detectors after check in. We were on our own here without the rep and been unaware that there was another security area. So, we tried to explain to security on our side of the scanners but the man says he didn't understand!! We were now panicking!! There were no gaps between scanners and no one else our side to talk to. I sent my boyfriend through first to try and explain to someone on the other side. Luckily this worked!!! They understood and allowed me through a scanner that was turned off down the end. No one escorted us there, so we just moved something to make a gap, which again I squeezed through. As I walked back up to the other scanners, a member of female security patted me down and that was that!

Overall, I think it will be pot luck when abroad if someone understands your issue or not. It would be so much easier if the card was a standard one for any implant device so it was internationally recognisable. 

The worst experience of all though was at the hotel!! 

You know what it is like when you arrive, tired and grumpy, after a long flight. You get ushered into the entrance of the hotel to check in and to your rooms as soon as is humanly possible! So the front door is opened and a fair few holiday makers enter before us. We follow, but without any warning, or sign, or anything, we find ourselves immediately walking through a metal detector with a security man sat with his desk right up to the edge of it. As soon as I walked through I realised and I felt a massive thump to my stomach area, where the battery is. I now can't work out if that was reality or panic and anxiety about going through the scanner but all the same, it was expected and totally invisible, especially with loads of people walking in ahead of you.

I tried to explain to reception staff at this point but they didn't understand. I used the word 'dangerous' but they took this the wrong way and got stressed about it. Instead I went to our room and immediately checked the implant was working properly, which luckily it was.

I decided the only thing I could now do was to inform the Thomson rep so that other people don't have the same issue in the future. 

I hate going to rep meetings on holiday, but I suffered all their spiel and waited until afterward to speak to them. I spoke to the English rep, as I presumed she would have more chance of understanding about my implant. She didn't!! I told her the issue and she just looked at me blankly. So, i reiterated the problem and what this can mean to someone like me and she stared at me then casually said she would suggest the hotel put up a sign. No apology. No understanding. No humanity at all!!! I basically left that meeting knowing that things are always going to be difficult for me to get people to understand and see things from my point of view. 

Funny enough, no surprise, on leaving the hotel at the end of the holiday, there was no sign, no warning, no change. The security man was still sat with his desk more or less touching the edge of the metal detector. I tried to explain I couldn't go through it, so that I cook take my luggage outside, but he basically laughed at me. He had no idea what I was talking about. So I had to squeeze past him, whilst he laughed, which made me feel so uncomfortable! 

I think this is probably a bad experience compared to other places or holidays on the future but it has shown me how vigilent I need to be and how difficult it may always be to explain, especially whilst abroad. 

 

Since my return I have read loads of advise from other people with similar implants, saying that they have been told they can go through metal detectors, but I think I'll stick with avoiding them. Not only am I sure I felt a jolt, but apparently the implant may turn off (which I guess for this type of implant isn't a massive issue) but also I have heard that it could wipe all the programmes off the device, which would leave you essentially 'without' a device until you could get reprogrammed.  

Life is never going to be easy!!!