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.