Friday, 23 December 2016

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.

Thursday, 24 November 2016

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.

Sunday, 20 November 2016

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. 

Thursday, 13 October 2016

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!!

Tuesday, 6 September 2016

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!!!

Monday, 5 September 2016

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!

Tuesday, 16 August 2016

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.

Friday, 5 August 2016

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.

Wednesday, 13 July 2016

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. 

Sunday, 10 July 2016

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.

Tuesday, 5 July 2016

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!! 

Friday, 24 June 2016

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.

Tuesday, 21 June 2016

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. 

Wednesday, 15 June 2016

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.  

Monday, 13 June 2016

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.

Sunday, 12 June 2016

Day 6 - going home

I wake with the aim to prove to myself that I can get home. That is the plan and nothing seems to have changed, however, I want to make sure I am making the right decision.
I have now tried taking half the codeine with the anti sickness half an hour before to allow it to work first. This seems to be ok and I don't feel any worse in terms of sickness. 
Again, I get up for a wash and only when I get the shower and look down does the pain intensify. I manage to have a shower with lesser pain than yesterday by keeping my head straight and lifting my legs to me rather than bending my neck. It also seems to be worse if my shoulders are hunched, as you do in pain, so I am trying to stand more like I would usually, with held back shoulders. 
When I walk, it has a bit more purpose now. I am not shuffling so much and can manage further in one go. 

So the home plan seems ok.
I then wait around for pharmacy to get my medicines prepared. Whilst waiting,  the nurse removes my cannula and changes all the dressings.
I manage to get photos of the incisions and am pretty happy with them so far. It was a relief to see I didn't have staples but stitches instead. They all look neat and tidy.
My chest area is really bruised. Didnt think about that being the case. It seems as though he had sorted out the horrid bit of old scar here, with 12 neat stitches, so I really hope I don't have the same problem anymore.
This area is achey and still heavy but not as painful as it once was. I can see it is fairly raised but apparently it has gone done since it was inplanted. Only time will tell what it will be like and how obvious it is going to be. 

My abdomen appears not have been stitched. The nurse took off one strip to see but didn't want to take off more in case the wound isn't held together with anything. This is strange to me but maybe it will heal well?! It looks very pinched together at the moment, with a strange ridge. I hope this settles soon enough. 
This area doesn't hurt much. It's a bit uncomfortable occasionally, depending how I am sitting but the stabbing pains I was getting seem to have disappeared. 

My head is quite tidy. 10 neat stitches on the same line as before. I am hoping that the loop of extra wire isn't going to be there anymore but it's hard to tell with the swelling.
I'm sure they shaved a bit more this time. More like a square of hair gone, rather than a triangle but then there are 2 leads so they needed to feel further up my head.
The nurse thinks I am allergic to the dressing, as my skin is red and sore. She asked if it felt sore but I couldn't even feel where she was touching, so I'm guessing that area is still numb. 
The front/side of my neck is still very tender from the tunnelling of the wires.

They were all redressed and she gave me spare dressings, saying it is best to keep them covered until the stitches come out, and then for a few days afterwards too.

About 2.30pm the medicines came back from pharmacy and I was given my discharge papers and we were allowed to go home!!!
I read the papers first, to make sure I understood everything. It stated on there that I had "depression - existing and anxiety". I didn't know how to feel about that. I suppose it's best it is in my notes and known about but I'm not sure if I feel that I want to move on from that.
It's tricky. I guess them knowing I have been through that is important to understand how I may react to things. Oh well, just surprised me I guess.

So, we were up and out of there, slowly but surely. 
It was great to get home and although it took me a while to get comfortable, I had my fiancé taking good care of me. The first time I went upstairs to the toilet, he asked if I needed help. I said maybe to come back down. When I came out, I found him waiting at the bottom of the stairs for me! Now that's love! 

I know am very lucky to have someone to stand by me through all the bad times and support me no matter what happens. 
I will get through this!!! 

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. 

Saturday, 11 June 2016

Day 4 - another change of ward...to neurosurgery

The day was rather odd. As I said, in the Rosa Burden Centre it seemed I was rather left alone. No one really came to check on me much and one nurse was pretty abrupt when I tried to discuss what my choices were about pain relief. 
I got up after breakfast, to go to the toilet and wash my face and the pain left me in tears! This was emotional for me. I don't tend to cry, especially with pain. I think part of it was frustration st not knowing what to do about it either.
Luckily at this point a nurse came in as I had asked someone to come and do my hair, so it was off my neck & face. She didn't really notice how I was feeling but the distraction was good. It stopped me wallowing and having my hair plaited was relaxing and just made me feel less 'ill'.

At lunchtime, someone (not a nurse) cave to my room and asked if I was coming for lunch! Lunch where?? I didn't have a clue what she was talking about. Apparently they have a lunch room that people go down to. As I didn't really get chance to say much more, I said I'd try and make my way down. I put on my slippers and dressing gown, made it to the corridor but just felt awful. Like I was in a bubble and just didn't feel right. I went back to my room and pressed the buzzer to say I can't bake it to lunch. They bought me  sandwich to my room. 

I had a few visitors that afternoon, which distracted me, but eventually a nurse came in to say that i would be transferred to the neurosurgery ward, as things can happen much quicker over there. She explained that is it difficult to get drugs approved and signed off, as they don't have a doctor there on site and therefore they have to wait for one to come across. By now, I was happy with that. Although it meant another move, I would finally be where people understood what was wrong and about the operation I had had. 

About 9.30pm a porter came over with a patient in a wheelchair, who was going into the room next to mine. The nurse asked if he had a stretcher but apparently it didn't work, so I had to make it across in a wheelchair. It was very rickety and wobbly, feeling every bump. But this time my fiancé was with me, so it was more manageable by chatting to him. 
We made it across in the fuel stenched ambulance and it was easy to get to the neuro ward. We had to wait 5 minutes in the quiet room, while room 40 was sorted but soon enough I was in a plush room, with a TV and en suite!
Straight away the nurse was in to see me. It took a while but she got the IV paracetamol sorted once I reminded them. I needed yet another canulla, as she tried the newest one in my right hand but it had gone and saline just filled up on the back of my hand. She had to use the vein inside my elbow, that I give blood from a lot. She was very pleased with herself that it worked out well. The IV was set up and took about half an hour to go through. By now it was 11.30pm so I just went to sleep. This was a bit annoying as I couldn't really tell if it had helped. As I slept pretty well I thought it had made a difference. And I hoped that this would sort the pain out enough for me to go home. 

Day 3 - sick & dizzy

Because I was forced to take strong pain killers, due to amount of pain I have been in, it has now affected me as drugs seem to do, making me dizzy and sick.
I haven't actually been sick but I keep retching and feel like I will be sick.
When my lunch arrived, I opened up the lid and immediately had to move it away from me.

Why does this happen to me!?? I am back where I didn't want to be, feeling sick and in pain is far worse than just the pain itself!

I was managing to get out of bed myself a bit easier and contemplated having a shower of my bottom half today, as I can't get any of my dressings wet. It seems I am never going to manage that now. So here I lie, feeling stinky and sick. Just great!!!

The nurse tried everything she can, with a range of anti sickness tablets, alongside the oramorph but eventually I decide it's not working for me, so I don't want to take oramorph anymore. They keep offering it and discussing tramadol and codeine but I have been sick or dizzy on those before, so I explain this and they reply with "well, there isn't anything else"!!!!!
I feel like I am the most difficult patient on earth! How can there not be anything to help people who don't take drugs often enough to cope with the effects???
A nurse suggested IV paracetamol and as if had that in recovery before I knew I would be ok with that. She also talked about getting Physio to come and see me to see if they can give any advise or give me more confidence in moving around.

When the neuro registrar came to see me he said he wanted to avoid IV paracetamol as it would mean I would have to stay in hospital. That seems so silly, as I am staying in anyway!!! He basically continued to say that medically everything went well with the surgery so it's up to me when I go home. I explained about the pain and he said maybe not go home today and they would try to get me to the neuro ward. 
Next thing I know, the nurse says I have a place on a ward in the Rosa Burden centre and that I need an ambulance to get me there, as it is outside the main building. I asked if I would be in a wheelchair as in not sure I can manage that so she phoned up for a stretcher to be bought across. She packed up my belongings for me so I was ready when they came. 
About 3pm a porter arrived and I scooted across onto the stretcher. It was very odd to be wheeled around the hospital, only looking at the ceiling. Eventually we were outside and the sun was blazing down on me! I felt like a vampire left in the sun, totally melting.
I was wheeled into the ambulance and the nurse came on board next to me. The ride was horrid and stank of fuel. It took far too long to seemingly just go across the road and was pretty bumpy.

We end up outside this little house, where I am offloaded and pushed inside. It's like Fort Knox and we have to knock on the window to be allowed through the door. I get taken to my room and told the camera is off, as it's normally a room to record sleep disorders. It's tiny, pink and dull. On a plus side, it was cool and had a window view.

It seemed like here I would be left to fend for myself. I didn't feel like I could call on anyone too often and no one just passed by, like they do in a ward. 
Later that evening, after not taking anything but paracetamol and ibuprofen since being there, I decided I could cope with going for a wash/shower. I slowly made my way across the hallway to the shower room. I now felt the worst pain in my head I had ever felt! The local anaesthetic must have worn off and it was like someone was pulling on the top of head. Pulling from inside and pulling downwards. I had to hold my head in pain but because I am me, I was still determined to have this wash. I struggled through showering my lower half and armpits. Putting on a little moisturiser and putting my pjs back on. I made it back to bed and once lying down again the pain subsided. It was almost like it hadn't happened. So weird and disconcerting. 

That night I got a better nights sleep, as it was so quiet and calm over there.

Friday, 10 June 2016

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. 

Thursday, 9 June 2016

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.

Sunday, 5 June 2016

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.

Wednesday, 18 May 2016

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.


Sunday, 1 May 2016

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. 

Tuesday, 12 April 2016

Back to work!!!!

It's only day 2 of being back at work and already I know I can't manage!!!!
I even woke up with head pain this morning and that rarely happens. My head has continued to build in intensity and pressure all day and I literally can't stop the pain, no matter what I do.

I have caused such a scene at work, refusing to teach certain age groups and getting things made as manageable as the role can be....so I need to try and do as much as I can.
I think when I get an operation date, then I will feel like it's actually happening and I can begin to plan how I will make it to that date and what I can cope with having had that worry eased a bit.

UPDATE: 19th April 2016
So I've been back for a week and a half and I thought the pain and panic was beginning to settle and ease. The dull constant head pain is lower but this evening I have had a terrible sharp pressure pain at the top of my neck when I bend my head forwards. 
I can only put this down to the amount I would use this position of my head at work, talking to young children.

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

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