Emergency reprogramming

After my conversation with Mr Patel last week, he was true to his word and organised the pain clinic to get me in to see Mike from St Judes quickly.

I only got the call on Monday and I saw him this afternoon.

He sees 7 to 8 patients with occipital nerve stimulation and says they range in what works or feels best. Most prefer tonic stimulation, as that it is what they are used to. A few prefer burst programs. But he feels that if you can find a program that works well, surely it is best to have it without sensation. 

It was great to see him, as it put a lot of what I feel, about being different, unsure and uncertain, to rest. He spoke about my recovery from this operation so matter of factly and agreed with all I said about it and how Mr Patel reacted, that it make things feel normal. 

He explained that he and Mr Patel had gone to a conference held by the man, who now works in New Zealand, that came up with the burst program and therefore he understood what was meant by the new way that the prodigy stimulator can work. Basically, they pinned the main guy down after the conference, to ask what he thought about how it can help occipital and peripheral nerves....it was explained that lower frequencies would work better for this, even on the burst program. 

So that's what they would like to try for me. 

Mike also explained that it is different for occipital neuralgia, as compared to spinal cord stimulation, as the area that caused pain can be specifically targeted. However, with occipital neuralgia, to get stimulation in the base area of the nerve causing the pain is what is required, which means that it can spread to the specific area along that nerve. But the stimulation is best if it covers a large area. The moment the stimulation caused pain, pinching etc, then it isn't going to be useful.

So we set about trying a lot of different settings to find the contact and the lead the gives the best area of stimulation. Initially I got a lot of pinching and tightness from the programs but once he moved onto the higher lead of the two, I started feeling stimulation in a higher area than usual. It was around the top of my ear but spread across to the area that my new pain seems to be happening in. So he set a few programs with the stimulation in this area but using a tonic sensation. Then he created 2 burst programs that use the same but the last of them had much lower frequencies, as was suggested at the conference. 

Apparently it is suggested that it can take at least 3 days for someone to know if a burst program helps or is suitable, even on the 30% lower setting than it comes in at. Therefore, he wants me to begin win the tonic programs to find ones that help with the pain. They all have a wide difference between the start of the simulation to the time that it gets too much. So he feels that these have a great hope in helping me at this time. Then he could create a burst program of the best ones in the future.

Mike says that the Oxford Pain Clinic says it takes 6 months for a person to get benefit from the stimulator implant, but Mr Patel disagrees. I guess if I find a program that can help then I can't imagine if taking quite so long. But it seems that last time round it just was never quite right. So they gave it chance but something needing changing. 

I have come away feeling hopeful. It seems that at the moment the operation was worth it to get a better chance at helping the pain I am in and to get a different response to where the stimulation is feels good. I feel like it is in a better place to help the original ON pain, as well as the new pain since the surgery.

So now, to try these programs out and see what comes of them. 

Day 5 - another blow 😔

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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. 

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!!??

Occupational Health are so understanding!

I have just returned from an Occupational Health appointment that was actioned by the OH nurse that called the other day. I have seen this doctor many times and he has always been fair and has ensured he has learnt about my condition in order to understand and recommend useful things.

Today, he could just tell something was different!

I know he has access to my medical records but he straight away mentioned the affect on my emotional state. He questioned me a lot on my mental health and that of my family and although he knows my situation is different, he shared that more recently he has had a dramatic rise in the number of teachers that are suffering unmanageable stress and anxiety.

He mentioned that I looked uncomfortable, anxious and that my body language was different to normal. He shared that I usually seem such a resilient person but that today I don't come across in the same way.

Basically, he just got it!

On top of all this, he discussed in detail how long term chronic pain can affect people's mental health massively and recognises that I have always had a positive outlook on my condition and future until now. He shared how when he attended train about chronic pain, held by apparently the pain management doctor that I am waiting to see at the pain clinic, they ensured the doctors attending the course truly understood chronic pain and its daily impact on people. He said they all were given a large, strong bulldog clip that they had to put on their finger and then continue listening to the training. He said every so often they were all told to leave the bulldog clip on, but that people were shaking their hand in pain and seemingly not paying attention to the speaker any longer. He said that if they put their hand under the desk, no one would see their pain, so therefore this was what chronic pain is like....every day....for people like me!

I found this truly interesting. That, one, this OH doctor really does understand, and that, two, there are people out there that understand pain and are doing what they can to help people like me. I am looking forward to the referral to the pain clinic now.

So, after masses of discussion about my family's mental health issues, my referral to mental health and that I am awaiting a review to hopefully get offered CBT, the school referral for counselling and the lack of support and understanding I face at work, he suggested that I don't go back into work this term. In a way, I am relieved that the decision has been made for me. Everyone has said I shouldn't go in before Christmas, but part of me thought it would help me make a decision before the new year about if I could cope and I would see my lovely class. However, the OH doctor said that until I have a meeting in place (which I asked for over 2 weeks ago....typical) and that a stress risk assessment is underway, then I shouldn't go into work. He also suggested that the CBT and counselling should really be underway too, so that I have some strategies to support myself through it. He mentioned that he will also recommend a case conference but that only my work can actually request it.

So there's that decision. Made. 

Overall, I feel an understanding that it is out of my control to take time off work due to ill health. 

That this isn't my fault and that the accumulation of everything my life holds has brought me, perhaps inevitably, to this point. 

There seems to be more agreement by others that my work place aren't making my life any easier and that that isn't ok.

And therefore.....perhaps I can stop beating myself up about not being at work. Stop trying to control things that I can't control. Just take each part of my life a little at a time and that's just how it will have to be until I know more about the next operation to potentially change the battery.

Perhaps I will look back one day and the decisions I am now being forced to take will be the thing that changes things for the better, or steers them in a better or more interesting direction.

Who knows???!!! 

Update:

18th December - visit to see my class for Christmas

So, I decided that I wanted to see my class for Christmas, as I had made then cakes and written cards for each of them.

On the way there though I was super anxious. I had the shaky leg thing again and had to get a friend to meet me at the entrance to ensure I made it in. I popped by the office to hand in my sick notes, but it was a fight with myself to stay! I felt sick to the stomach and all I wanted to do was run away! I've never felt like that before! I was scared! There is no way I could go to work feeling this way, as I knew at this point no one could ask me to do anything or expect anything from me! 

These feelings really worry me! All that kept me there was the chance to see my class.....who didn't disappoint! They were so excited to see me & obviously truly miss me. I am so in two minds. I know that I am a good teacher, who does everything I can for my class and they respond well to me! I am experienced and knowledgeable and the parents trust and like me...... YET I just don't feel I can do it as well anymore. Sharing my class is hard enough but having to fight my pain, my feelings and the constant battle with life etc, it just has become too much!

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.

Even more waiting!

After attending what I thought was a consultation appointment with my neurosurgeon, it turns out it was a reprogramming session. Luckily I picked up my remote as u went out the door!!

For the first time ever I was emotional! I held it together but I know my voice was wavering. He went to get Mr Patel to discuss my issues with the battery moving.

When he came in the room, I was slightly less emotional, as I always feel I need to be matter of fact with him. I explained that things have been worse and that I'm now suffering stress/anxiety due to everything in my life. He asked if everything in my life was difficult and not right, and I replied that the only right thing was my boyfriend!! He replied that that was something to reflect upon! I know he's right but at the momen it doesn't feel enough to keep me sane!!

Mr Patel then discussed the questions he'd been asked to respond to by my work, saying that he was, as always, non commital but clear that there is every hope that I will be able to get back to work as normal but that the operation to implant the stimulator was not a 'silver bullet'!!! He said that he explained that it needs a lot of manipulation in order to get the best from it.

This made me feel that he had done what he could to support me in all this.

We then discussed the ON. I said that things had been far worse and that the stim hadn't been much help over the past couple of months. He asked (playing devils advocate) how would I feel if he was to take it all out. I didn't rush to say "no" but I did say that I wouldn't want that as it would hard to get it approved again. He talked about having it moved to over my ribs, which I said I wouldn't want as it would be in the way. He explained that in that case, potentially the best option would be to suture it down in the hope of securing it in place. Then he went on to say that if he was to go in, it might be that he contemplates a change of battery type, to avoid having to operate again. 

He said he'd make an appointment for a couple of months time for me to see him then and discuss all this. 

I don't really see why we have to wait! I'll have the same issues then as I do now, and it just means waiting longer and suffering more!

Mike, from St Jude's, then explained that the new type battery works differently and uses different waves so that the patient didn't feel the 'annoying' tingling feeling. He also went on to say that he might recommend adding a new and different lead as well, as this could allow the frequencies to be lower as the lead isn't a paddle but the contacts go around the whole lead, meaning that only a small percentage is emitted to the main nerve.

I guess at least there is still some hope for this. Having a plan for me is critical, and I did say this. So let's hope they find the right answer soon!

Then I had to go through the reprogramming. He seemed a bit lost as of what to do, but set two new programme that are a replica of my first setting but using higher frequencies, 10hz and 20hz. He then said that after discussing these kinds of issues with a professor who works at a hospital in Queen's Square, they find that 70hz seems to be most useful and that's where they start with every patient. Therefore, he set the same programme but with 70hz.

So 3 new programmes to try out for a little while.  

I'm not really sure how I feel. 

On one hand, I HATE waiting! I'm not coping now so why would waiting help. Also, it's just putting it off.

On the other hand, at least there's a plan. I don't know if it will happen or even if it will help but at least there's something.

So guessing, once again, time will tell. But in the meantime, I've got to somehow manage and get by, and also see how I cope with work! Whoopee!!

Lost my way!

Over the past few months I have beaten myself up about "not being me", knowing that I don't appear to cope with things the same way as usual. 

I seem to get really annoyed and angered by things easily. This can be because of change (which I hate at the best of times), people, choices, planning or organising things. I even seem to be running my life by time limits in which I should have finished or completed something, even simple things like shopping.

Recently this has culminated in me having crying melt downs, often before work in the morning. And just to make it clear, I am not normally that type of person. 

Anyway, after much support from friends who insisted I saw my GP, the appointment I made weeks ago finally came round. 

I didn't know how I would explain or how it would come out, but it seems I rabbited on about everything and got very emotional.

This was the GP I had sought out to be understanding and supportive ....and she was! 

She believes I am suffering stress and anxiety, which is also making my OCD worse too. She agreed with me that it seems to be since returning to work after the operation, back in February/March time. She also said that anxiety often comes alongside chronic pain, that's it's not uncommon. 

I have been referred to the pain clinic, in the hope that CBT may help me get myself back again. 

For me, now I've thought about it, this has been going on a long time. I fight it, and have been a lot, but really I know that's not the normal me. I think that it's because I feel I haven't got that hope to fight for/wish for/wait for, as I have had the operation, the permanent stimulator, that was my best hope! I always had something, in the future, that I was waiting for, whether that was a nerve block, PRF or the stim. I always had the next plan. I just had to be patient. I just had to make it to then.

Now, I don't know what the future holds. I don't know what I am holding on for. I don't know what is going to happen anymore. 

So therefore, I am lost!!!!

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. 

Irritated.....

Recently I have generally been irritated by my stimulator, no matter what program I use!

I tend to feel it a lot more than I used to, even on low settings, and it is really quite annoying. Because of the low frequencies I use, it feels like a heart beat or pulse in the back of head! It is pretty disconcerting. I used to get this if I rested my head against something that pressed on the lead but now it happens when my head is not resting on anything at all!

I have also noticed that the left end of the lead seems to stick out more than it used to. I'm not sure if this is due to weight loss! Can you lose weight on the back of your neck??

I am still having the battery flipping issue too. 

I am awaiting a phone consultation from the consultant on 14th October. I guess this will be to discuss the issues with the battery and where to go next. I am Hong though that Mike from St Jude's had filled him in on the potential end of the line of settings to try with my stim, as I feel that this is also a big issue that I need to know what options are available ....or not!!

A couple of weeks back I had a coupe of days where I had weakness in my right hand. I have no idea if it is related to my ON but it seems pretty coincidental. I basically went to write something down and I couldn't physically hold the pen with any control. I was unable to write properly and my hand would spasm at points, making my handwriting look all over the place. I continually tried to corvette this issue through practise, but I had little fine motor control for almost 12 hours!! My hand and arm felt heavy and odd and I couldn't generally control it. It was so strange, but it hasn't happened since. 

I have been experiencing higher pain levels for a longer period of time than usual and throughout this have had extreme dizziness to combat too.

The programs I have set on my stim at the moment don't appear to be helping in any way. I either can't cope with the pulse or it is pinchy or too strong, or it is just my everyday program that doesn't break through the worse pain levels. I have usually been riding it out and it drops in intensity within a few days, by this time it hasn't and has lasted well over a week at this pain level!