Pre-op done

I haven't updated for a while as I have been trying to get my head straight and work out what I need and want to do about it all.

In the meantime, I was called for my pre op assessment to prepare for the next surgery. I also finally received the letter that also goes to my GP to explain the last consultation visit. It did state that there would be an additional lead put in, as well as a change of battery that would be put in one of the choice areas. I still think i am going for the chest area, as the wire that runs down over my ribs causes so many pain issues and often gets trapped by my bra. 

I am still awaiting a date but the last I heard is that it would be in May sometime, as requested by my consultant. Goes to show that the secretary doesn't know everything and that her meddling in all of this was uncalled for and completely unnecessary. 

Anyway, the pre op only lasts 18 weeks, so that gives it until end of June....but I truly hope it's before then!

So the pre op was interesting, as I got a chance to mention how much the anaesthetic makes me sick and that I have been pushed out of hospital that last two times and then been sick at home. She really listened and am hoping this will be thought about when my admission details are planned. She also understood my issues completely and was sympathetic and interested. It is so unusual for people to have the time to ask and want to know the answers. It felt good. Running through my medical history though really highlighted how healthy I am. How healthy I really should be, if I didn't have this condition. In a way that is great to know but also very frustrating. 

Then she thoroughly checked my heart, breathing and felt my stomach and the battery area. She said she would usually feel people's head and neck but knew this would be painful for me, so didn't do this. 

Apparently I am extremely fit and so didn't need many tests. Just blood pressure, blood test, MRSA swab and weight & height were taken. No ECG needed.

My concern between now and then is work. How will I cope with it? Will it make me worse in terms of pain or with my mental health. I have come so far recently and having a plan and knowing a rough date for it all really helps. I really don't want to go backwards, as I am already staring over with this repeated operation as it is!! 

Another waiting game

I am feeling a little bit calmer after finally seeing my consultant neurosurgeon at the hospital on Wednesday. It had been a long time coming and I really needed a plan to base the rest of my life decisions around, as sadly this has to come first in all those decisions.

I set out to have a plan and a rough date before I left the appointment, so asked my boyfriend to come along too so that he could battle some of this for me.

So we went in to the room and as always, I was asked how things were. I actually replied that I was struggling, whereas recently I have just grunted to imply things weren't good. 

I explained the new pain issues with my battery area and without looking, he stated that it must be rubbing against my ribs and hip, causing these issues. That this area has a lot of movement and losing weight has changed how it was sitting in the abdomen, meaning it won't be in the same position anymore.

We discussed that the battery needs to be moved and he showed us where the rib area would be and the other choice is in the chest/collarbone area. This will be my choice and I didn't need to decide there and then! Phew!

He said this will be a new battery type, about the same size as the one I have now. He explained again that this will mean I won't feel the stimulation so that other frequencies, that are to strong now, can potentially be used. 

He then asked what was worse, the occipital neuralgia pain or the battery pain. I explained that not being at work helps me control the head pain so at the moment the abdomen pain is more concerning. He mentioned having options of changing battery or also changing the lead. I said to do everything that can or needs to be done to sort all this out. I then asked if it essentially meant taking all this out and starting again and he agreed to that. 

I ensured that I asked when this could be done and apparently Southmead hospital is under constant red alert, so they often don't have enough beds and people's operations get postponed. He knows his waiting list is full up to March and then has annual leave to use up before new tax year, so the earliest date is April. To me that is a long wait feeling like this, but I have no choice.

He then sent me off for immediate X-rays of the whole implant area. I barely had to wait, so was pretty impressed. I was shown through to a little room to change into a gown and this went straight through to the X-ray room. In total I had 5 X-rays of my head, chest, abdomen and pelvis areas. I tried to take a sneaky look at them but only saw the final one they took of my head, straight on view, so that it was clear where the lead was placed. It was so strange to see it in my head! I really wanted to see the abdomen one and wish I had asked. Although this was taken laying down, so it wouldn't have shown how close it is to my ribs or hip, as it is stretched out much more when I'm laying down. 

I'm pretty sure I won't hear anything about the X-ray and that it was for future reference when I eventually get this operation, but at least something was done and it felt more like a REAL plan this time and this helped it to feel that way. 

So I left thinking that meant a new lead and battery in the place if my choice, however my boyfriend saw it as not a change in lead as the new battery would help things to be different. I'm not sure on this, so nearer the time I will need to speak to him to double check the plan if it isn't clear on my following letter. 

Now I need to sort out the stress in my life. Stay calm and be patient.

Sharp pains around battery & wires

For the past couple of weeks I have been having severe sharp pains in my abdomen, around the battery site and wires that go over my ribs. 

It was worst when I was running at the gym....it was so bad that I had to stop and was hunched over in pain! 

I have continued feeling this pain on and off randomly and get sharp stabbing pains of this too, that make me jump and wince.

All I can think of is that my stomach muscles are now pushing against the battery & wires and making them move. 

I really need to see my consultant but I have been contacting his NHS secretary since the beginning of December, via phone calls and email, but haven't had a response. I am supposed to see him in the new year, as he said when I saw him at the start of November. This time is truly urgent and I need a plan of action to help me physically and mentally. 

Currently I am stuck. Stuck in the same place I have been many times, over and over, but with work being less understanding or caring and with me more frustrated than ever before! I need to get on with my life, and manage whatever it is I can. I know family is more important than a job but I want to have that opportunity!

Today I have turned off my stimulator to see how I am without it. Mike, the St Jude's rep, suggested this back in November when he saw that I was generally down about it all. Well, all I know is that the stim definitely does something! Today I have exhausted, pressure in the back of my head and far more dizzy. 

At least I know it has been worth it for a little relief. I just need more relief to be able to believe I can control the worse pain better and therefore function when I need to. I also need this added abdomen pain and battery flipping issue to stop!

When will this all end!!??

Update about appointment and issues

I have been so crazy with work since returning to full time after my phased return, so just haven't had the chance to update.

I have found it really demanding and pain levels have most definitely been up high a lot more than before. The stimulator still isn't taking those pain levels down easily and I basically have to see them through.

After seeing my consultant on 6th May, I am basically in a bit of limbo. He was understanding about the battery movement issue, so much better than I expected. He said he may be due to muscles building up behind the battery and pushing it out of place or may have happened anyway. Again, he didn't suggest stopping going to the gym, which I'm glad of as I still feel it helps to strengthen my muscles. I feel much less shoulder and lower back ache than I used to.

He also suggested that I may need to have surgery to place the battery somewhere else. He still agrees that the chest is not the right place for me, but suggested over ribs on the side (which I don't like the thought of, as surely it ca be knocked easily and it will protrude through the skin) or in the buttock area. I did say that I liked where it was, just want to stop it moving and asked about somehow securing it in place. Apparently it can only be secured on side, but he was outwardly talking about using a mesh, like in hernia ops to do this. If I have to have surgery, I hope the latter choice can be done!

For now though, he has asked me to use a waist belt to help keep the battery in place in the hope that it will scar back into place. This one is all I could find that seemed to be what I was after, and that wasn't too tight so I could move in it.

To be honest, I don't use it everyday, as I have clothes that keep it in place. I do wear it when teaching PE particularly, as tracksuit bottoms are lower than my work trousers and so push the battery from the bottom constantly.

I have found that wearing dresses actually doesn't make the issue worse. I thought that having no clothes to hold it in would make the issue worse but actually it seems that clothes are a big part of the problem. They seem to be the thing that pushes the battery and flips it. I have realised that I now seem to bend or squat over in a different way to try and avoid the battery moving though. 

So it is happening less, but due to my changes. If I try to grab the battery, I can still hold the top away from my body, which I shouldn't be able to.

My consultant also agreed that going part time, even temporarily, may be the way to go. He said that the stimulator was never meant to get me back to how I used to me and that it is only a way to manage and reduce the pain, not eliminate it. He said that I am the best judge of what I can manage!!

I therefore, spoke to my work about this but that I don't want to do this until maybe after the summer. I feel it's not fair to my class to make changes in the last term of the school year. This was over 3 weeks ago and I still don't know the plan. 

The first day into work this term I had a break down about the stress and overload of work. I broke down crying at home and couldn't stop. Before half term I had 3 moments at school where I had to stop myself crying due to the stress and pressure. I don't feel myself at the moment. I am not coping well and the pain levels are high more often than they been for about half a year! All I can do is wait and hope that I get the support I need from work. 

It is so wrong that this condition can be so misunderstood and ignored!

Update on scars

Apart from still suffering from the battery flipping and the wires stabbing, most of the scars are looking really good.

My abdomen scar is fantastic, especially remembering how unhappy I was originally. It is barely noticeable now and really flat.

I guess the rosehip oil is doing a great job here!

My chest scar is still the same. The raised keloid part is still just as raised. It still itches and hurts a lot. It is often really itchy but due to it being so raised, it hurts to itch it. The other half though looks really flat and barely noticeable. How annoying!

My head scar is great and has always been very thin but the loop of wire is getting more obvious and sticks out more. It too is often itchy and sore. 

It really difficult to get an accurate photo but you can see here that the loop of wire is obvious and it goes directly under either side of the original scar.

So, I'm not sure what the future holds with all these issues.

I still haven't heard back from my consultant, although the St Jude's rep called a week ago as he had been told there was an issue with the battery. I explained the problem with it tilting forwards and he of course said I would need to see Mr Patel, but that he felt from experience I may need to have the battery replaced slightly. I really don't want another operation!!!!!!! But I can't put up with this happening for much longer. The other day I bent over to put something away on a drawer and it flipped 90 degrees forward and got stuck. I had to push it back in! Utterly hideous feeling and it happens more and more when I bend over or put my right leg up. So unfair!!!!!

Update: 14th April 2015

I have had a letter through with a date for a neurosurgery follow up appointment, but I have no idea if that is to see Mile from St Jude's to reprogram the stimulator or to actually see Mr Patel about the battery and wire issues. I guess I'll just see when I go. It's not until 13th May, so I've got a little while to wait now. That's annoying but at least I'll be back to full time work by then, so will have truly tested it all out properly! 

Battery flipping and wires stabbing!

I have been putting off updating about these current issues, as I was hoping they would sort themselves out!

It's been about 4 weeks now, so I guess not!!!

First problem:

Since that start of March, so just after I saw my consultant (typical) I noticed that my battery seemed to flip forward when I bend over. It seemed to happen when I had trousers where the waist line was on or below the scar site. It doesn't happen with my gym leggings or work trousers, as these are high waisted. 

It then seemed to almost get caught in the forward position and then catch on my ribs. A couple of times I have more or less had to push the battery back in as it is stuck. This not only feels hideous, it makes me feel sick for a split second. 

I now fear this happening everytime I bend down or over and so am starting to hold the battery site when I do bend over.

I know this photo isn't pretty, but this is me being able to hold the battery forward with my finger behind the top. This isn't normal and didn't happen before I pulled the wires off my ribs.

The wires are still off my ribs and haven't scarred back down totally! To me, this shows that there is now excess wire so the battery must have moved upwards slightly.

Second problem:

Since 13th March I have also been experiencing sharp stabbing at the back of my head, but where the excess loop of wire is. It happens for a few seconds but is often so intense it stops me in my tracks. It feels very sharp and quite often that area is also very sensitive to touch and hair movement.

I have been keeping track of this and it seems to last for a few days and then go for about a week and then continue that cycle.

I am not sure what is causing this. Whether it is more disturbed nerves (due to my over sensitivity) or it is the actual wires causing this feeling! Who knows!!! 

So over the past two weeks I have left two answer phone messages with my consultant's secretary and emailled but only just heard back today. Although, she seems to have not understood, as Mike from St Jude's phoned me thinking there was a problem with the battery. I explained the issue and he thinks I may need to have the battery replaced further down as I have already experienced this for four weeks, which is long enough for it to scar back down. 

I REALLY don't want that, but also I can't put up with this awful feeling and worry whenever I back down!

He is suggesting an appointment be made with my consultant for after Easter, as he is away at the moment.

Guess we shall wait some more ....and just see what he has to say!!! Grrrrrrrr!!

Update on my scars

I've been meaning to do an update on how my scars are doing and what they look like over 3 months after the surgery. 

My head scar looks pretty much the same, as it healed pretty quickly and neatly. I think the loop of extra wire is now more obvious than it was, as all swelling has gone now.

My hair has now got to an annoying half stage, which it's too long to be unnoticed but too short to pin up or wear within my ponytail!

My chest scar is still very lumpy (well, half of it) and the sensitivity is still high when brushing on clothes or if my hair touches it. 

I have now used the Haelen tape for about a month but I can't see any improvement or difference in how it looks at all. It is still just as raised, just as red and shiny and just as sensitive. 

Immediately after taking the tape off, the scar does seem flatter and the skin around it is paler, almost white! This calms down overnight but then the scar raises back up again too. Sometimes whilst wearing the tape, the area become very itchy and the tape seems to pull on the area. At most it seems to helping with clothes touching it during the day, but there are times when I feel it needs to have a rest and so I leave it open for the day, with just some rosehip oil applied. 

My stomach scar is just becoming less purple and healing well. It is straighter than it was and does not seem to be wonky or puckered! Even though I am not back at the gym properly and losing weight again, this does not seem to affecting the scar's look or shape.

I am now switched on....

The past 3 days I have finally had the courage to turn the implant on!

It's strange but not horrid. 

The first program I used, number 3, I seemed to get used to within a few minutes, so I turned it up, but then couldn't feel that after a little either. Strangely though, I could feel it more if I tilted my head to the right, rested my head against the sofa or the oddest one, had the wand and remote connected to the battery! 

Today I tried a different program, number 5, but within a coule of minutes I had to change it, as it was too sharp despite being on the lowest level. I changed it to program 4, which is a more 'tappy' but again I have got used to over a short while and then barely feel it.

I am not sure yet how well it is helping with the ON pain, as with all the other pain and recovery, I don't know that I'm experiencing higher levelled ON pain . And the lower level constant pain I feel seems masked by the stiffness and surgery discomfort that I am still feeling.

The incisions though are looking a lot better. The chest one looks amazing and I can tell will eventually be barely noticeable. The one at the back of my head is still raised but is neat and I still have numbness between it and my war. My stomach incision is neat but still puckered and odd shaped. It might be getting slightly better but it's hard to tell' 

Chest

Head

Stomach

Emotional

The night before last I just randomly broke into tears!!!! So unlike me. I'm guessing what I've been through is finally hitting me, so have decided to wait until next week to turn my implant on.

I'm not in any rush! I've put up with this ON pain for so long, I can cope I little bit longer.

My stomach incision is still upsetting me, as it's still puckered and wonky! I think I can feel the battery right underneath the scar, so I was wrong in thinking that it was resting on the scar. I now have no idea why it is such an odd shape!! Everyone just keeps saying it will sort itself out over time....and, it's not that bad....and, it's better than being in your chest....but I still have a deformed body! I kind of blame myself because I was the one who demanded not having it in my chest, so I feel like I brought this on myself!

Not sure how that is ever going to straighten up!!! :(

My other incisions look ok.

The chest one is perfect...

The one on my head is still pretty lumpy but am presuming that will go down as the scabs from behind have only just come off! 

Only time will let for any of this now, I guess!!