UPDATE - sorry I've been away for so long!

Firstly, let me apologise about being away for so long.
Mainly Apple have stopped updating and supporting the app for this blog, so it is REALLY difficult to find a way to create new posts easily.
Also, life has got in the way (in a lovely way) and I am now pregnant and due very soon!

So.... in as simple way as possible, let me update everything that has been going on for me in my ON world.

The pain clinic were mostly unable to help me. They offered me some physiological support and created a new Pain Course that I was one of the first people to attend. It was specially for people suffering chronic pain and mental health issues related to the pain.
This was really very interesting, and was mainly based around mindfulness and 'being kind to yourself'. It was a good way to meet other people in similar situations, however of course there was nobody else there suffering from ON. I felt very "different" as they were all still under Consultant gaining treatment and support, and for me I was at the end of the line and therefore not seen regularly by anyone at all.

However, I tried to put the mindfulness in place during my daily life and it helped a little...just to calm me and allow me time to relax. I still have bouts of terrible pain that can not be lowered by anything, and I have to just ride them out.

Throughout all this time, my husband and I were trying for a baby, despite the struggles and difficulty that may add to my world, I do not want ON to stop me from trying to be a Mum. There are ways through everything, and this was something i was willing to find a way through.
Coming off contraception was awful. The hormones they give do help the pain occur less often, but I needed to brave this. The pain clinic were unable to help with this, as everything they could offer "contraindicated" against falling pregnant...ie. they would not allow certain treatments in case I was already pregnant!!

so....fast forward a looooonnnnnng time later. I am pregnant and due very soon. The hormones of being pregnant have helped massively. I literally don't think much about my ON at the moment, but am pretty sure that won't last. Still, i am enjoying it for the time being.

The only other small issue I have had, is that the lead/wire behind my ear that is looped out of the way has gained some excess scar tissue surrounding it and so now shows through the skin. My Consultant has seen this and is not wiling to do anything to correct it, in case it impacts on the quality of the leads, as one is still working perfectly. This is not to say that the programs I have set on it work well, as now isn't a good time to test it out as I am barely experiencing ON at high levels.

I am seriously wondering what life will be like as a new Mum with ON and very little medical support.
So I guess, as always, time will tell.

Finally got into the Pain Clinic!!

So, I FINALLY had my appointment with the pain clinic.

It was really useful and interesting. The doctor totally understood my issues. I never felt belittled or like I was waste anyone's time. That makes a change, to be honest. 

I knew there wasn't really anything that could be done for my ON, but needed some help for the awful scar I still have. It doesn't look any better than the last photos and it is just as painful, itchy and annoying. My GP had tried to get funding for steroid injections but was turned down because of cost. I was going to go down the private route to get it, but the pain clinic have created a plan.

He is referring my onto the clinics physios, as I mentioned I saw the community physio once, and have some exercises to do, but he said these are specialised and would understand more about what is suitable for me to do to help my shoulder and upper back pain.

He then went on to suggest a medicine/drug that I haven't tried before, duloxetine. I double checked that it doesn't cause weight gain, can't have that with my wedding so close. I have to wait for my GP to get the letter from them and then I will get it from there. It is a nerve pain drug that should help both my ON and the scar pain, as apparently that pain is neuropathic too. The incision has caused some nerve damage that is causing the pain. That's the first time that has been mentioned but it makes total sense. 

I just wish I had been referred to the pain clinic years ago.

He also suggested that after a while of that, to use a capsicum (chili) cream to rub on the scar to help the pain. It will work like a distraction. It can be used as many times as a day as you like. 

Then the plan is to see how that is going and if it isn't enough there are options of patches that are put on for half an hour at the clinic or even after that to try PENS, much like I had for ON, to help interrupt the nerve that are cause the pain. He suggested this as it won't damage the skin around the scar. An injection, such as a steroid injection, could cause more keloid scar tissue to form. I learnt such a lot is so little time.

I then had an examination. He used a piece of cotton wool. First he touched it to the inside of my wrist to show me a normal sensation. Then rubbed it across the scar, then the same area of my chest but the left hand side. I had to describe the feeling across my scar compared. It was like a rough Brillo pad had been brushed over my scar rather than a soft cottony feeling. He then did the same with a small blunt needle. The feeling over the scar was REALLY sharp and the sensation stayed there for a long time. The pain clinic nurse was the one to ask about if I could still feel the sharp feeling. She knew all about ONS which was nice to know. I felt 'at home' where people understood me.

So now it's just to get that first prescription and see how things go, I guess.

Been a long time...

I know it has now been over 2 months since I updated. I really should have sooner but there has been such a lot going on.

January was taken up by me ending my employment and career as a teacher. It was a very difficult decision but I have to admit that I cannot hold down that job any longer and to look after myself I need to find a job that is more manageable. Teaching hours are long, the job is physical and the needs of yourself go our the window when you are responsible for children. I tried everything and anything to make it double, but it just isn't. So as of the end of January, I am now unemployed.

This feels very weird. I feel guilty, but it is my own guilt. I know it is for the best and my health will hopefully have less bad days without the stress and tiredness but it is the first time ever that I have not havd a job or a plan. 

Anyhow, a couple of weeks into February I set about launching a small cake business. I have been making cakes for many years and feel that this way I might be able to control my work and when I do it. I can choose to take on an order or not. I can work when I feel well enough to. My thoughts were that if I took a job working for someone, I would again be at the mercy of a timetable and my pain doesn't work like that. It comes on strong when it wants to. Working for myself seems a good start. I at least don't feel like I don't have a plan and that I am achieving nothing. The guilt has gone, even though all I am doing is creating a social media buzz and trying to get out to people.

Recently I had a week of really bad pain. I got a little cold and this always knocks my pain up about ten notches. I had to ride it out, as I still don't have a program on my stimulator that helps me control or lower it once it has started.

So not having work hasn't really changed the frequency of the bad pain but I do feel a weight has been lifted. I can't let people down so much and I don't have a huge sense of responsibility to the children and the rest of the staff. I don't have anything to prove. The stress is dramatically less and I ave space in the brain for other things.

I really feel like myself again, but the new version.

Awful sharp pain

Today I felt the need to update as I'm experiencing such awful pain. Yesterday the back of my head was itchy and annoying me. The wire area was sharp when pressed and I had to keep rubbing it to take away the annoying feeling. Today I am getting a continuing sharp pain when I move my head or rest it against anything. It literally feels like someone is poking the back right side of me head with a needle. It's sharp but a very small area.
I can only think that this is due to being so busy and not getting much rest. I have been so busy declaring Christmas cakes, wrapping presents and shopping and all these things take their toll on my and my pain levels. It just goes to show me how much not working really has helped my avoid more of this. As I have still been sleeping well, about 10 hours a night, yet doing that little bit extra is obviously still too much!!

While I'm here, I'll update about the ill health retirement and work stuff.
I haven't received anything about the application for ill health and I sure there is still a form I need to complete and sign. Therefore I doubt the application has been sent off the Teachers Pension Scheme.
I have contacted the DWP. THAT was ridiculously difficult! I answered a million questions over the phone and eventually was told to send in the original of my doctor's note. The next day I got a text to say that I am entitled to Employment and Support Allowance! It's about £72 per week, which I can't really sneer at. I am now on half pay but with the extra it work out as just under three quarters of what I usually get per month. For now, that will do.
In terms of the dismissal meeting from work, that I was supposed to be told about mid December if the ill health application hadn't been submitted, well....I haven't heard a thing!! To be honest that is disgraceful! It's stresses me out enough worrying what is best and what will come of it, but to not stick to what they said really bothers me. I ended up emailing to say so, knowing no one will get the email until the new year, but I feel like they can't pull the wool over my eyes. I know what is going on!

So....it seems that for now I am waiting to hear about dismissal and ill health retirement. I can't move on or move forward until this gets sorted.
Yet the longer this takes the more I realise how work really does affect my pain levels and therefore what will I be capable of in my future??

Concerned is the least I can say about it all.

Ill health retirement update

This seems to be truly dragging on AND ON!!!!

I keep getting constant emails from work asking me about the medical reports, but obviously I have no control over when these are completed.

When I saw my GP on 31st October, she mentioned that she had just completed her report and it was with the Practise member of staff who would return it to Occupational Health.  She ensured me that she has mentioned my mental health issues and how my condition plays a large part in adding to my mental health issues, if I am trying to maintain my 'normal' life pattern of teaching.

I also got a referral for the Pain Clinic.....finally, as well as a referral to a clinic that has physio etc on offer to help my upper back pain. She also prescribed me steroid cream to try and ease the itchiness and pain around my chest scar. Sadly, this turned out to be dermovate, which I had as a child for eczema, but I'll give it a go.

Yet today I get ANOTHER email from work to state that they have been in contact with occupational health, who have contacted my GP and consultant to request the reports. As of yet they still haven't received them!

I really don't know what I can do. All I can do is wait. But if I keep getting bothered about it it adds to the worry and stress of the whole process. The process that I can't control!

I truly hope this all comes to an end soon. I can't continue with all this adding to my life.

I have come to conclusion, with a lot of support from friends, that the sooner it is over the better. This will avoid having to attend a meeting about dismissal from work. 

I also got a letter that I have to take to the DWP to claim incapacity benefit, as my SSP is about to come to an end. This makes me cringe. I have never had to do this. I don't get the process, it is totally alien to me. I know that I am entitled to it and that I deserve it, but it just feels so strange.

So I guess I will continue whiling the time away trying to keep my mind off all this and hopefully one day soon I will begin to know this is all coming to an end. 

Until then I feel my purpose in life is moving further and further from my reach. What am I going to be able to do? This is in someone else's hands and who knows when that choice will be made. I can't plan for my future until I know. So I will just wait.......

More reprogramming

After I had emailed the previous update, I didn't hear anything, even though I thought it was obvious that I needed more reprogramming, so I contacted my consultant's secretary for an appointment. She went round the houses, saying that i couldn't have an appointment until January, but the rep stepped in nay sorted it for the next week.

So last week I had more reprogramming.

Even though I told him that generally the pain has halved from a general 6 to a 3, I explained that the break through pain is worse and now more piercing and sharp, causing me to twitch and jump with the intensity of the pain. Also this pain is in two distinct areas on my head; low down right hand side and nearer the crown of my head. This seems to incorporate the original ON area and now the newer one that started since my most recent operation.

I expressed that I feel like I am left without much to turn to, as I have limited choices of programs that can be set and most are unusable for a day to day setting. The rep explained that with occipital stimulation, most patients only have 2 or 3 settings and that some are just for when the pain is worse and not intended to be left on whilst continuing daily life.

So we set about creating new programs based on the 10htz version that is the only one I can use.

We created a tonic version of this program, where sensations can be felt. 

Then after a few trials we found another setting that felt like it might be helpful and we made tonic (with sensations) and a burst (no sensation) of this.

So now I only have 6 programs, although program 1 and 3 are the 40htz and 20htz programs from before. 

He also discussed that maybe having the program on 24 hours a day could be overloading my occipital nerve, so turning it off at night mig be worth a try.

I guess, it's getting to the end of what I can gain from this now. Hopefully having at least another program to alternate with, so that I feel I have an alternative to go to if required, will help enough to gain control when I need it.

Update on new stim programs

When I last saw my consultant and St Jude's rep, they both asked me to update them on how it was going with trying to the new programs.

It's easiest to just copy the email I sent;

I was doing ok with the 10htz burst setting until I had a lot of added stress from work, who called a dismissal meeting because of my attendance. This is when the pain levels worsened and I couldn't control them using this program so worked my way back through the others. The tonic programs now don't seem to do much in terms of pain control in comparison, so I didn't stay on those for long. I then gave both the 40htz and the 20htz burst settings a chance by attempting to leave them on for a few days. The 40htz one feels pinchy and irritating within a day so I switched to the 20htz version. This I managed to leave on over 2 days until it became pinchy and annoying. The stabbing pain wasn't being controlled well and the numb feeling I have at the back right side of my head became more tingly and felt a higher degree of numbness and spread over a larger area.

I made the decision to switch back to the 10htz version as it seems to give me the best control that I can get from the programs I have.
It again took a few days to settle and help control some of the higher levels of constant pain, but I now have more sharp stabbing pain and tingling (like pins and needles) at the back of the head, than I had before the added stress from work.

I think maybe another reprogramming might be worth a try, although I'm not sure what you have left to work with, as I now seem to only have one setting now that I can use successfully without causing more aggravation or irritation. 

Ill health retirement

Although I have tried to make this blog about my journey with ON and not about my work, there has become a massive overlap...as my life just cannot exist the way it is and that is because ON does not mix with working, especially as a a teacher. 

I have been meaning to write all this down for a while, but it has taken a lot of effort to bring myself to begin to explain all this today.

Back in May, I was advised by my union that because of the nature of chronic pain conditions and that I cannot be cured, and that I have also exhausted every possibility with medication, surgery and work adjustments, I am highly likely to be approved ill health retirement through the Teachers Pension Scheme. With all the CBT that I underwent, I knew that I couldn't manage my job any longer, and the term I worked before my operation in June proved this to me. I was told to apply after the summer once I had recovered from the surgery.

So during the summer holidays I set to work writing my statement. It is over 2500 words!!! This is to explain my condition, what I have tried and the outcomes of these. Also to say what adjustments have been made at work and how this effects me. It was scary to read this, once I had written it, as I realised how much I risk health and safety of myself and the children just by being there. I am now at peace with the fact that I can no longer work as a teacher. I have seen the truth.

Once seeing occupational health in August, who of course fully backed my application for ill health retirement, a letter went to school to say that I am unfit to do my role and that medical reports and files were now being sought to add more evidence to my application. 

I had spoken to my GP and consultant before this to let them know that I was applying. They were both very supportive too. With all these medical experts agreeing, I know that I am making the right decision and that the final decision in the hands of the Teachers Pension, as they decide if I meet 'not working as a teacher again' OR 'not managing any gainful employment'. I, for once, am leaving this up to them. What happens will happen ...and I will work out the rest of my life after that decision has been made.

However, the union case worked who checked through my statement believed that I would be eligible for the higher tier, despite not many people meeting the requirements for this. This actually scared me, as I started to realise that I am worse than I have pretended I am, for a long time. I have been fighting teaching not even thinking about over jobs but the more I think about it logically. How can I know when I am going to feel ok to work? How can I ensure that my attendance isn't poor anymore? I can't manage sitting at a desk but yet I can't manage a physical job either! Still....I will try and worry about that when I know for sure.

So at this point I thought that, on occupational health advise, I now just await the form along with medical reports and then I compete my part of the form.

BUT......is my life ever that straight forward?

So a few weeks into the new term, with me signed off work while the application is compiled, there are some issues from my employer. I can't really go into the ins and outs, but let's just say that it is uncalled for, irrational and unsupportive. Enough to make unions VERY angry.

So I am now feeling in more of a bad place mentally and this obviously effects my pain levels. 

Time will tell what will happen but for now I have been advised to not take phone calls from work but just contact via email. This helps me cope a bit better, no one can enter my space without me choosing to look at my email.

However, this is the last thing you need, when you have made a difficult decision to end the career you have wanted to do since the age of ten. Every part of your school life was working towards getting to university, then ending up in massive debt to train for your dream job. Then working for the past 14 years doing that job....ending all this is not easy!!

Ground breaking..!!! 😳

I have just got back home after seeing my consultant and the St Judes rep at the hospital. It was a bit of a rush appointment, as I only got a phone call yesterday asking if I could attend. It exactly 3 months since the operation today, so I bet they have to have seen you as a follow up by then! 

Anyway, first, as always, I saw Mike from St Judes and after reminding him of whee I was last time I saw him and how much pain I was in, I told him what I had done with the programs and the outcome of leaving the second burst one on and he was literally jumping out of his seat with excitement!!!!!!

Apparently, the person that had spoken to at the conference just before I last saw him, did say that he had experienced 3 days for the program to help the pain levels. Also the excitement was that usually they say to use the standard burst setting which is 40htz but this was the one that I said was more aggregating. The program that has been helping me is only 10htz. This apparently is super exciting and ground breaking in that for people like me that can't cope with the sensation of the normal tonic programs, it wasn't proved yet what level would help. He would have said to use a lower level (such as turning it down to 60% of the strength it comes in at, whereas I was using at at 70-80%) but by me saying the lower frequency seems best, is exciting!!! 

Mike was so astounded by this that he rushed off to get Mr Patel to tell him what has happened and begged to speak first before I said how I was!! So it MUST be something amazing I guess.

Mr Patel was excited too and really glad I had found some relief. He joked that they were worried that I was coming in today as they didn't know what the news would be. 

Both of them asked me to contact them on the next few weeks or so to let them know how I am getting on!

Out of research purposes, Mike has set up a 20htz version of the program and wants me to retry the 40htz version keys to see how it goes, and also the 20hts version.

If the 10htz version is best, then he wants me to try it lower than I have been using it. He thinks this can help the breakthrough pains that I have been getting. Although he says that with any stimulator it will always be the case the there is some stabbing pain due to the nerve being stimulated.

Overall, he is hoping the 10htz version is the best for me, cos that will be the ground breaking find that it seems no one else has managed.

He said that only 2 of us have the prodigy stimulator for occipital neuralgia, so there hopes are on me to see what works!!!

Glad to be of service!!!

3 months post op

It's been a total roller coaster.

As always your brain forgets how bad things actually were, but I know they were bad. I was losing hope a little bit and thinking I would never see a normal day.

However I have had a couple of weeks without much bad pain, just the standard low level pain that I can manage. I still find it painful to put my hair up and I still have a numb yet painfully sensitive area on the whole right back side of my scalp.

The last few days haven't been so good. Not the severe sharp pulling pain I had but now a quick sharp stab occasionally in the middle of the right hand side of the back of my head. This goes make me wince or move but it is gone very quickly. I also have a developing sense of ache, that feels like I have been frowning continuously. It begins to hurt the front of my head and forehead area, and gets wore as the day goes on!

I am now worried to change my program setting, as i haven't even linked up to the remote since then. I was worried that I might lose the good setting I have going. I know that is crazy, as I can surely just put it back into the program and level I have it on now and essentially it will be just as good. But it did take 3 days to settle and help, so I feel like I would have that wait again. And I don't want that!

All least things are better than they were. I just couldn't see the end before and was worried about to planning anything.

Now I can see that there is hope.

Annoyingly the stimulator was the key to sorting out that hideous pain that I had since the operation but it just felt so new and different!!

Anyway, now I can move forward and know that things can be better than I hoped. And maybe when I get the confidence to play with other programs, then I might find something even better!

Who knows??!! 

Update on incisions:

My stomach scar is really good.

I have recently been on holiday so happily allowed the sun to help disguise the scar and blend it in. It can barely be seen in any photos and it doesn't cause me much trouble. Occasionally I feel that it is there when something presses into it, or I lay a certain way on my tummy. It's not pain but just a different feeling.

My head incision is ok. It's not very noticeable but it is more lumpy than the previous scar. It is raised more at the top. The circle of excess wire is far less protruding than before, so that's good. However, it's still difficult to itch that area because the wires cover a large part of the neck here.

My hair is growing fast. But is quite an annoying length now. Can't put it up and it's noticeably cut! Oh well, it will grow.

My chest though is a different story....it really aches and hurts when anything presses against. Lying on my stomach for a massage or on the beach was really sore, as it pushes my breast up into that area which seems to push the implant up too. This hurts!

Also the actual scar isn't great. There is a small part in the middle which is normal but the rest is hypertrophic. This means the scar tissue has overgrown due to too much collagen. This makes it super sensitive, which twinges and gives stabbing pain when anything brushes against it, or sometimes even just on is own. I have always rubbed rose hip oil onto it, but this hurts. I guess it is healed now but it doesn't look great.

I am going to mention this to my GP who I am seeing this afternoon. I hope there is something more than the healan tape I tried last time!

Relief!!!!! 🙃

For a week now I have had much lower pain and the terrible stabbing, pulling pain rarely happens. 

On Saturday a week and a half ago, in desperation, I left my stim on a setting I hadn't tried for long before. It is the 10th setting which is a burst one, so I can't feel it and I turned it down 20-30%, as recommended. At the time I didn't feel anything helpful but I decided to leave it on just to see.

It wasn't until the Tuesday that I noticed some relief. To start with I could do things that would normally have meant added pain, but it didn't. I also noticed that my scalp was really tender and overly sensitive.

What is going on..????

The past few weeks have been a bit crazy and I just haven't found the chance to update my blog.

Two weeks ago I was in so much pain and couldn't even put my chin to my chest without severe pain that caused me to shout out. This is not like me and as it was worse than it had been and I just couldn't find a way to get rid of the constant awful ache either, I gave in and called to doctors. They called me on to see me and although they were mainly worried about infection but there weren't any signs of this, they still said I needed to do to A&E to get seen by a neurosurgeon.

I really didn't want to go, as I know they won't do anything and it would be a waste of time but the promise of fish & chips by my boyfriend once we have been, encouraged me to go anyway!!

They took everything seriously at the hospital and eventually a nurse managed to get a neurosurgeon down to see me. He said he had no idea what was cause the added pain, gave me nothing and sent me on my way, saying he will email my consultant to let him know about the pain. He suggested I contact his secretary if I don't hear anything early the next week.

So as I thought......all a waste of time!

I actually can't believe you can be sent away without any treatment or support!!!!

An of course, I never did hear from my consultant or anyone else! 😔

So over the past few week the pain as lessens slightly but got worse again too. I seem to get a pulling, tight feeling when i look down or turn my head left. This happens a lot when I wash my face, eat or bend down to get something.

It is really debilitating and difficult to cope with. I have lost count of the times that I have been in so much pain, I shout. This had been around friends too which I had always managed to disguise until now.

I have tried my stimulator a few times over these couple of weeks. Sometimes it has been so distracting or felt like it was stabbing me or sending shooting pains so I turned it off again.

I have now begun a few days worst of using a burst program that seems to be manageable. I obviously don't feel any sensations to be annoying but it seems to have lowered the constant dull pain. I think it may have caused a wider numb area at the back of my head but I guess that's better than pain.

So I will just see how this continues.

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. 

Consultant finally calls!

After waiting over three weeks for someone from the hospital to phone me, as promised, I write an email to my consultant's secretary to explain the situation.
On Thursday my consultant neurosurgeon, Mr Patel, called me.
Overall, he was pretty annoyed that his team had said "nerve damage" as he says there is no reason to think that, and it would be that the nerve has been irritated by the surgery and the placing of the leads. He said not to listen to what his juniors say and to take it with a pinch of salt, as they don't understand this specialist procedure.
He also said that he was aware that I was in hospital for longer than expected but no one had tried to contact him at all. After I explained that they were trying to speak to him before they said what they said but had been unable to get hold of him. He said that they know how to get hold of me but I heard nothing. Therefore, I get the impression that they didn't try hard enough!

So....
1. There you go! Even Mr Patel is now stating that occipital neuralgia isn't well known or understood, not even by neuro registrars!!!
2. He never gets annoyed, he is the most laid back doctor I have ever met. This must have really annoyed him!

Anyway, now I have spoken to him, I obviously feel less worried about the future of this pain and know that it should settle and ease. However, no one, not even Mr Patel, can say how long that will take.
At the moment I still have the severe pain often. Occasionally I do shout out with the pain. Anything that I do causes this pain at some point. I am sure I am able to disguise the pain better now, as I am more used to it. BUT then that means that I am, as always, being misinterpreted of what I can manage.
So, I take each day at a time but yet I forget, until it happens, how bad the pain is.

I did also hear from the HR people at work, who called me on hearing that my doctor only gave me a 2 week doctors note as it would cause less worry and stress about returning to work before I hear about the 'exception' that could be made to allow me more recovery time. I had emailed to tell them this, also stating that I a still in massive pain and am not safe to drive as of yet.
So they finally made the decision that I don't need to return to work before the summer holidays. They will allow me that final week and not start the attendance policy until September. Therefore I won't trigger the formal attendance meeting until after the first week of next academic year.
This is a relief, as it was always asking too much to expect me back to work this side of summer, but with this unexpected severe pain, I know I couldn't teach, not even for an hour. It annoys me that it took my email about added stress to get them to make a decision. And also they kept that they had the power to do this hidden from me until now.
This makes me feel, as always, like they aren't interested in me as a person, but as a number, a commodity, a nuisance.

4 weeks post surgery

It has almost been a month. 4 weeks have passed by since my operation and despite some improvement, I am still uncertain of what the future of this operation holds.

Of course I am not able to move about more and in less surgical pain or discomfort. BUT the nerve pain is still there. It still pulls on my scalp and stabs into the crown of my head when I look downwards. Washing my face in the sink is still an issue and that's just something small that I have to do daily.

I am not sure as to whether the pain is actually less than it was or if I have become better at handling it. Because if I didn't, then I wouldn't function at all! 

I also wonder if the numb/over sensitive scalp is linked, and therefore when that gets less will the pain get less? Or are they separate issues?

Last time I had this surgery I did have a numb ear and was told that this would sort itself out eventually. It took about a year before it got as good as it was going to get. I still have a small part of the top of my right ear that has less feeling than the rest. Therefore, is my numb scalp like this? Will it take a year to get as better as it will do? 

It seems like I am being left to wait this out. Left to hope that this will get better eventually. 

Knowing I had numbness last time, from the nerves being disturbed, to me it seems like the new nerve pain is a separate issue. I didn't have it last time, even though I had the numbness. Surely it would be better for me to speak to an expert rather than make up my own mind with all this!!?

So the incision sites are looking alright. 

My abdomen is slowly settling back down and is less ridged.

I am not worried about this and it didn't really hurt or is sensitive. I have been able to wear my skinny jeans without any issues.

My head looks very neat but the top area of the incision is still numb.

My hair is growing pretty fast, although this time this is not my main concern. The area to the right of the scar is where the extra wire is, but this time round it doesn't seem so obvious or circular.

My chest is still very tender. There is still bruising so it must have been jammed in there fairly brutally. The scar looks like it is going to settle down and heal well. I ma truly hoping that I don't get the same overscarring and added sensitivity that I had before. 

Since I have been wearing my normal clothes, I have noticed that the battery doesn't seem to stick out as much as it did. This makes me feel less conscious of it and less of chance that people will notice and stare. 

The scar shows a little bit but I think they have extended it backwards rather than more to the left, so it doesn't show anymore than it did before!

So if I hadn't had the added complications, I probably would be pretty far along the line of recovery from the surgery itself. I would be able to walk with any problems and would maybe be driving. I would of course need to be carful with carrying heavy items and stretching but I can imagine I wouldn't be in pain, but rather discomfort.

However, it is the new nerve pain that is the worse problem. I don't think I can drive without the pain happening and when it happens it often shocks me and caused me to wince or jump. Because of this, driving would be a danger.

At the moment I can't see how I can teach, even for an hour, with this pain. I usually think I can force myself to get through it, as it's only pain rather than causing more damage to myself, but his time I just couldn't cope! I know I couldn't.

And this knowledge is scary. If things don't start to ease soon, I just don't know what the future is!! 

Uncovered at last!!

A week after having my stitches out, was when I needed to try and keep the dressings and steri strips on until.

My head incision made it hard for the dressing to stay stuck down. We changed it twice and had to use micropore tape to keep the steri strips down with. Eventually it was pointless by 5 days after as the steri strips weren't doing anything to help the wound anymore. 

So now, 2 weeks and 2 days after surgery it looks pretty good. It's neat and tidy but is still a bit raised. The numbness is still there but I think it is getting less numb. There is some feeling there now but I am getting pulsing feelings low down near the scar when I was getting the severe sharp pain.

I am still getting this occasionally, and although I am finding ways to avoid things to seem to make this happen, I think it is also happening less often. I am getting a severe ache mostly. This seems to be in my neck and base of head. It's like I just can't get comfortable and lying down sometimes helps but it depends on the position in which my head is held.

So finally I could have a shower properly and enjoy washing my hair stood up, so in less pain in doing so. 

I let the water wash over my incision and they are tender but it feels so refreshing.

After I applied rose hip oil as it did wonders last time round. I am truly hoping it will help me heal quickly.

It doesn't look like much here but I have a massive issue with the amount it sticks out from my chest. 

It IS going to be obvious and it IS going to be seen. I guess I will have to get over it, eventually. 

You can see here how it protrude most on the inner side, that would be seen most in clothes. 

This is a side on view of my chest so you can see just how much it sticks out. 

This is going to be emotionally difficult for me. I just know it! I know that I don't really want to be looked at differently, despite the fact that I get frustrated with people not understanding my condition. I don't want to HAVE to talk about it, if someone asks, whereever I am.

That first day that I go out with my chest on show ....will be a big day!!!!

Aside, my abdomen incision is looking good. It's slowly flattening out and looks much less red.

Nothing much to worry about here anyway now.

The next day I decided I needed to see if I could turn my stim on. Until now I've forgotten that that was the point of this surgery. That I need to, again, get used to hoping this will help and bring my pain down.

I worked on the two programs that I could feel, to see how I coped with them. The first one felt too low down, so I tried the third and it was ok. I put this into the burst version of the setting and lowered if by 20% (2 bars) and left it on for an hour or two. It was ok until I ate tea, on my lap, as I am still unable to eat at the table, the leaning over is the action that makes the new pain pierce my head. But it was now that I got worse pain. I decided to turn the stim off. This did make the pain lessen but not disappear. 

I also achieved a short walk, as I needed to go to vote on the EU referendum.

2 weeks post op

I meant to write this yesterday, when it was exactly 2 weeks from the date of surgery but I gut way laid with booking a summer holiday. ☀️

Anyway, I'm kind of glad I waited, as last night, for no reason at all, I kept getting the stabbing sharp pain in the top of my head. It was as I was falling to sleep and I don't think I was lying in a strange position, but it left me squirming and whining in pain. Not good. 

I have no idea what caused this. The only thing that was different is yesterday I took off the dressing (as it was falling off) and the steri strips (as they were only stuck down on one side anyway). I wiped it with a damp cotton pad at bedtime and put some rose hip oil on it gently. None of this had hurt or caused pain.

So strange.

Today I have had a couple of moments of this pain when I'm not particularly moving. 

I hope this settles! It's worse than happening when I move, cos at least I can control that!!! 

So here are the latest photos of the incision areas.

The chest is still very bruised. Every morning my arm feels to heavy to hold normally and I go to the bathroom supporting my right arm.

The wound looks pretty good and les raised now. However, the battery will definitely be obvious. I know there is still swelling but then surely it will only make the shape of the battery clearer once the swelling goes down. Even in a t-shirt this area can be seen.

I guess that because it is on show, I will either get over it sooner or later and not care as much about it showing, or I will find clothes that cover it better. Who knows which way I will go!!!

My head incision isn't bad. It looks pretty flat and much better than just 2 weeks after the last surgery. The area to the bottom right of the wound is where the extra wire seems to be, as I can feel the wire underneath. But I don't think it is a circular excess this time, which seems to feel like it protrudes less. 

The area at the top of the incision is still fairly numb and odd feeling. This seems to be where the pain can be caused from. It's like this area is tight. Hopefully that means once this has calmed down and has normal feeling back, then maybe this extra pain will ease.

I still haven't heard ANYTHING from the hospital, which is appauling. However, the longer I wait, the more I think there isn't anything they can do anyway, so what am I expecting them to say. Time will tell.

My abdomen incision looks much better than 2 weeks old. It's still slightly bruised and hurts to lean on it but it looks pretty good to me. 

Hospital haven't lived up to their promise

So, part of the agreement to allow me to leave hospital on Saturday and not stay in until at least Monday, was that someone from the neuro team would phone me on Monday to discuss my new head pain.

That didn't happen!!

I phoned up the ward at about 4pm, as Hazel the F2, had given me the number to ensure I spoke to someone. A nurse passed the phone to a neuro registrar, who said he isn't on the neuro team fit me but he remembers being told about me. He said he would contact the neuro registrar and get them to call me.

Tuesday....I waited! I heard nothing.

On Wednesday, again it got to 4pm and as no one had phoned, I called the ward. A nurse answered and I fully explained. She said all she could do was pass on all these details to the neuro team.

Still...I heard nothing!

I truly wonder if I had stayed in hospital would I have seen anyone yet? Or would they have done this quicker because I am not out of sight, out of mind!?

It is utterly ridiculous. What am I supposed to do? Every day I am in tears from the pain. I basically can't do sang thing that makes me tilt my neck down or upwards too much. I am spending my day lying down, although I am mostly uncomfortable and achey. My head gives a pins and needles like tingle a lot. But the pain is nothing like I've ever felt. I literally can't cope with it! I can't stay like this. I will never manage to do anything!!!!!! 

Stitches come out!

This morning I went to the doctors to get the stitches taken out. This time round has been much easier than with staples. I couldn't wait to get them removed at this time but stitches are much less bothersome.

The nurse was really interested in what I'd had done. I explained that I didn't think the abdomen had stitches and she said it could just have been held together by the steri strips. She started on that incision. It didn't particularly hurt and all was off in no time. She was happy with how it was healing and decided to leave it without a dressing on.

Next she cut the stitches off my chest incision, one by one. It took a while as she said some were quite tight. It wasn't particularly painful, just a bit of pulling.

She thought there were a few areas where the skin wasn't quite together or was overlapping rather than flat, so dhe put 6 steri strips on quite tightly to attempt to correct this.

Finally she took the stitches out of my head. It didn't take too long. 

Again, she added some steri strips to the top part, as she said the skin wasn't laying flat but was overlapping a bit.

Overall,I was really pleased with how carefully she did everything and how particular she was about how the wounds looked. 

She recovered the chest and head with dressings, to hopefully stay on for a week to give them chance to stay flat and together. She used a better dressing that was more or less like climb film, as my skin has become very irritated, particularly on my neck.  

Just a peek...

As the dressing on my chest was flapping off a bit, I decided to take it off and have a look and replace with a new one.

Wow, is all I can say!

It's still pretty bruised but it really sticks out!!! A lot! Particularly the end towards the middle of my chest, which will be the part seen when I'm wearing clothes. 

The dressing making it pretty sore around it too. Hate these dressings they stick too well!

I did try to make it as if I was wearing a bra by lifting up my boob, and it didn't look quite so bad or obvious. I really hope this will be the case for me.

This is precisely why I avoided that area the first time round.