Uncovered at last!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nothing much to worry about here anyway now.

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

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

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

2 weeks post op

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

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

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

So strange.

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

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

So here are the latest photos of the incision areas.

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

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

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

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

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

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

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

Hospital haven't lived up to their promise

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

That didn't happen!!

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

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

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

Still...I heard nothing!

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

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

Stitches come out!

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

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

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

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

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

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

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

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

Just a peek...

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

Wow, is all I can say!

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

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

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

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

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.