Two weeks Post-Op

This is me at two weeks post-operative for left-sided Thoracic Outlet Syndrome. As you can see, the scar is healing very well, and is hardly visible, although it depends on the light. and it is about 2 inches long. Doing gentle breathing exercises and stretches has enabled the tissue to heal well I think without sticking or causing adhesions.

I saw my physio today who was impressed with how I am doing at this stage. He said that the 'buring' 'hot' chest pain I am experiencing is to with the nerves remapping themselves following all that time of being compressed and that this will pass in a couple of weeks. He suggested that I wear a sling to offload the presssure from my arm for considerable periods of the day to hopefully provide some relief.

So, I have managed to avoid strokes,, blood clots and any other dangerous pathology, infection etc.

My physio did some very gentle work on my chest, local to the scar and to the back of the shoulder, and I will see him again next week.

He said to work on my breathing exercises and not not just be aiming for hitting all the balls to the top. This is further explained  here:

https://www.youtube.com/watch?v=l6gH4VcqXo0

Buring Pain - Day 11

https://www.youtube.com/watch?v=lkeXKrTfe9U&t=7s
The above Youtube shows me at 10 days post-op, but I am now feeling a great day of buring in the whole of my sternum and to the top of where my breast starts on the left.

Last night I had a great deal of difficulty getting off to sleep due to pain. Everything feels hot and so, so sore. I was so glad this area on the sternum had remained numb until very recently. It helped me to get out of hospital. I would have struggled to leave hospital with that pain, as well as the pain that is around my scar and feels like it is pulling all the muscles in this area.

I am having some random pain radiating down my left arm - it could be the subluxing ulnal nerves, and it ends in the little finger, but it is definitely not staying there, as it was permanent pain before the operation.

I still seem to be needing so much sleep and just fall asleep watching the TV.

I had therapy today, but it has taken it out of me, and the journey was really a bit too much.

I am now waiting to hear from my physio about my appointment on Thursday, and whether this should be a 30/60 minute appointment.

Other than that, no temperature or fever, just general post operative soreness and the pain and novelty of having surgery has long since worn off!

Managing Pain and Other Changes

Yesterday I took a short nap at about 5pm. I woke up with my right arm numb and neural pain, the sorts of symptoms I was having so often on my left arm that it was perhaps not so obvious on the right, as the right has never been symptom severe as the left, although in fact it has just about the same level of subclavian artery occlusion and [100% when Rob did testing], it has a slightly wasted lateral aspect of my hand and the scalenes are even closer together than the left side. For me this just makes it all the more definite that I should have surgery on the right side when the time is right. I really hope my surgeon can fit me in before the end of the year, and far enough away from Christmas that I will be able to manage the pain and enjoy it. Mind you, I am already coping so well after one week on the left side, it is amazing.

I am having to see a GP this afternoon because the receptionists couldn't manage to ask one of the GPs verbally if I could briefly increase my Oramorph for a bit longer as to cut it from 120mg a day to 40 is a big cut. I am going to negotiate 60mg per day, so taking 10mg every 4 hours, or something like that. It is a shame I have to waste a GP appointment as this could so easily have been done over the phone. Still, my carer thought I should get this checked as it is Friday, and to make sure all is well before the weekend.

I am still trying to do my stretches and breathing exercises. Having my hair washed in the bath was easier today than on Tuesday, so things are changing all the time. I am also extremely tired so lot of sleep is necessary, but that is OK - I only had major surgery just over a week ago. I also have extreme pain over my sternum that feels like an elephant has stepped on it. That is not so great!

https://www.youtube.com/watch?v=93hK6pgu_v4

One week - 7 days Post-op

At this stage coughing is finally becoming less painful, and at the end of day 6 I had some sensation in the previous numb sternum area - this seems to be fading in and out of pain/numbness. I am looking very well indeed, but tired. I slept like a log both nights since I returned home. I am managing my pain well but obviously not on as much oramorph as I was - but this was not well communicated from the hospital to my GP, so now as it turns out I am actually seeing a GP tomorrow, although they could easily of agreed a compromise in raising my usual at home dose just for another 7 days. I am doing well, and in nowhere near the pain I had expected to be in.

I have just managed to go and have my eyes tested. I am being very careful carrying much and have a bun bag as there is no way I can use a rucksack at the moment. I am really impressed with how I am coping. I have bought some scar oil and I have been using Arnica, the homeopathic medication for bruising and all of this I think is helping my recovery. I am also doing some small Bowen Technique moves on and around the scar work. I am going to be resuming physiotherapy from next week. I haven't got half the fear about  having the second side done when it comes to it. I already think I am much better and in less neural pain especially between my elbow and my hand than I was pre-surgery. I tried playing my recorder last night but it is still a bit sore for that just yet. Below is me at one week post op.

Day 5 Post-Op

I got up by 8.30am and had breakfast and was off the ward by 9.30am to go to the station in readiness for the 10.45 train. Everything ran to time. I got all my discharge paperwork and the staff returned my medications to me. I promised to do a letter of thanks and compliments to the ward staff when I got home. I was incredibly impressed with the hospital. My surgeon wants me to attend an outpatient appointment in c8 weeks and then I hope we'll have the next surgery by late November time. I definitely want to go come back to the same ward again. My consultant thought this wouldn't be a problem.

When I got back home it was nice to check my post, but then I had a mountain of washing and my carer came and we went food shopping and she washed my hair - this was painful due to the lack of strength I had in supporting my neck at the front, but we managed, and it was nice to get out of all hospital related clothing and into fresh clothes. I had supper which my carer helped with and a few hours it was all I could do to stay awake and I was in bed by 8.30pm. This is how my surgical staff looked at this stage:

Coughing is still painful and there is a lot of pain on my back on the left side as well as the wound feeling very heavy and pulling hard, hence the importance of ongoing stretches and the breathing exercises.

Here is a Youtube https://www.youtube.com/watch?v=CRV1x356Wx0&t=3s

Day 4 Post-Op

By day 4 post-op, all my dressings were removed including steristrips. This made the wound feel easier, although obviously it was still very painful and tight and I couldn't yet sleep on the left side, although I could just about lie on my right side. Coughing remained painful, and so did the numbness on the sternum area. My consultant reassured me over time I would regain feeling in this area. I made a decision not to go home on the afternoon of this day, but decided I wanted one more night in hospital as I was still on a lot of oramorph. My consultant was happy with this, and I arranged to book a train for the following morning so that I could arrive at London at lunch time and then have my carer to come and wash my hair and go food shopping. This was all a good decision and I arranged to have the same help with getting on and off the train at both ends.

YouTube https://www.youtube.com/watch?v=hOdROuqLKbQ

The weekend of 14th and 15th September - days 2 and 3 post-op

I had noticed a numb patch around my sternum. The oncall weekend consultant thought it was probably just due to the local anaesthesia and that the nerves were still slightly numb and stretched and that this would go.

Here is a YouTube Interview https://www.youtube.com/watch?v=GVcMgpu_Pfw

I had a visit on day one post surgery and also on both weekend days from a very lovely lady who I had connected to on Facebook and who gave me a lovely card and spent time with me and gave me a lot of support whilst I was in hospital as I was far too far away from friends and family. This was very kind of  her and I was so grateful to have a visitor. Also the visiting hours are not overly long which makes a huge difference as I was particularly fatigued - particularly on day 3 post-operative and driftd in and out of sleep.

Since day two post op I had also been using a spirometer as a a breathing exercise to inhale and move three different colour balls to the top - red was easiest to move, yellow somewhere in the middle and blue was much harder. I was to do this a few times a day every day. Coughing at this point was still very painful. I also had to do gliding stretches so that too much scar tissue didn't form or fascia stick to my healing wound.

Below are pictures of me at this stage and my spirometer

Day after surgery

On the morning after surgery I was told that I needed to be moved into a four-bed bay from my side room. I didn't actually mind too much as I am usually quite social and so long as I had good ear plugs, I thought I would be OK and I was. The other three ladies were much older [early 70s] and one had a tracheotamy which made her breathing a bit noisy, but she was a lovely lady. The other lady was a retired nurse, and I think possibly had early signs of dementia, and the other lady had a goitre removed, but had an infection and a temperature. The nurses moves all my belongings into the new bay and I settled in well, with the toilet conveniently near by.

One of the things that don't often get discussed are how anaesthesia affects your bowel and bladder and whole physiology. My bladder was very slow for about 2-3 hours, and even though  I was drinking a lot, I was hardly passing any urine. They did a post-void scan and it did show my bladder was totally empty, so it was obviously working.

In the middle of the afternoon my surgeon came to visit me to see how I was doing and said that my drain hadn't produced much more blood since the evening before when he visited me, so the nurse removed it and it was very nice to get rid of it as it was literally a millstone around my neck, and not very pleasant at that.

My surgeon asked me to do various movements with my arm which I managed well, improved with my hypermobility. Best of all my hand was warm and there were was no longer any pain between my hand and elbow, although obviously still a lot of pain local to my neck, chest and left shoulder, fully to be expected.

My surgeon explained that he had resected my anterior scalene and removed about half of my first rib. He didn't botox pec minor as originally plannd as he strongly felt my pain was coming from neck, but this can be reviewed in a few weeks if it needs doing in an out patient setting.

This is how I looked after my drain was removed;

Surgery Day - Thursday 12th September 2019

I woke slowly and did not feel remotely anxious due to being in a deep sleep, when  I should have gone and taken a shower in preparation for surgery. As a result I had a quick strip wash with wet wipes and managed to clean my teeth. I had been nil by mouth from midnight and had a cannula in with fluids to keep me hydrated.

At about 8.30am on Thursday 12th September, I saw my consultant and he came to chat to me about my infamously raised D-Dimer - they tried - the registrar and the anaesthetist [twice] to get some bloods to re-test my D-Dimer as it it was not done the day before, unfortunately. In the end they just felt I never had a blood clot. The anaethestist and I had a chat about post-operative care and having a  PCA of Fentanyl [which never ended up happening, neither did I end up in ITU]. I was supposed to be third on the list, but in the end I was made first and no sooner had the surgeon and anaethestist left, than I was being called to be ready for surgery hence the very rushed strip wash. Soon a nurse came with a wheelchair to take me to the heart and lung surgery theatres and I went with the HCA.

I was remarkably calm - upset that I hadn't had a wash, but also quite sleepy, so somehow this was keeping me in a very chilled out state, although my heart was beating a little faster. I knew there was no turning back at this point.

When I arrived at the heart and lung theatres, I was taken to an ante room and a friendly male nurse started talking to me and putting stickers on me that they would use to monitor me throughout surgery and a blood pressure cuff on the arm not being operated on. My surgeon had earlier drawn an arrow on the operable left arm, so there would be no chance [hopefully!] of any errors.

The anaethetist gave me a little Midazolam to relax me, and another nurse put a gas mask on me which I didn't like at all and kept taking off, so I was given more Midazolam and I never even managed to do my infamous countback from 15 - my glasses were taken and suddenly I don't remember anymore. I think I was put under at about 10am and the next thing it was about 2.45pm and I was waking up in the recovery room. I was shivering, which normally happens to me so they put a warm space cover on me and not long after that I was taken back to the ward. I didn't have a PCA, as I had expected, so they were going to manage this on 10 of oramorph every 2 hours, plus all my other drugs. I also had a drain coming down from my wound incision to drain off the blood and to prevent swelling. The drain collector looked like a hip flask. It is a bit gross, so don't look too carefully if you are squeamish - pictures of me and the drain are shown below.

The rest of the day was a blur - I was very sleepy and my throat dry and sore and I kept on trying to cough as a result of the anaesthetic gases which was very painful. I remember having some supper at about 5pm, and then the rest of the day I just drifted in and out of sleep, but was  relieved it was all over the wound was well covered with a dressing like a sanitary towel - see below.

Getting to hospital and arrival

On Wednesday 11th September I set off from London to Wolverhampton to New Cross hospital for my first or left-sided surgery for Thoracic Outlet Syndrome [TOS]. Everything went very well. I took a cab from my flat to Euston and made use f the disability service for the first time and they took me directly to the train by a buggy and put me on the train. The journey was on time and very pleasant and two hours later I arrived at Wolverhampton. A local taxi cab dropped me off quite the wrong end of the hospital, but I managed to find my way to the Pre-Op assessement suite, where the poor staff told me the computer system was down. They welcomed me and I was weighed and measured, had bloods taken and an ECG. A nurse then went through all my medications and asked me various questions about my general health and whether I had things like cardiac problems, asthma, diabetes, loose teeth, caps, crowns etc. This took a short while and then I saw another nurse who gave me a pair of hospital stockings to wear and then took me to the admitting ward.

As luck would have it not only was this a small ward, but a very specialist ward it being a 'Neck and Head' ward - [well I was having neck surgery!]. I then couldn't believe my luck as I was taken into a side room with a nice view of the skies and trees [OK also the car park] and it had its own TV! I sat for a moment not quite believing all this and then started to unpack my suitcase and arrange everything the way that I wanted it. I had even bought in some cards from home to put up as well as tons of magazines and a book and my MP3 players.

Not long after I arrived I was asked what I'd like for supper - there was a choice of 4 things and I chose a chicken curry. I then watched Downton Abbey.

Unfortunately the doctors still hadn't clerked me in at bedtime so I took my own medications, but then was woken up twice in the night as two different doctors had to try to put a cannula in and a drip of fluids. This was very disruptive and I didn't sleep well.

I fell deeply asleep in the morning, and should have got up when the Healthcare Assistant [HCA] woke me to make my bed for theatre. I should have also had a shower because in the end all I managed was a wet-wipe type wash before my surgery.

Four days to go until Surgery

I can't believe it is now just 4 days until my surgery. I started packing my smaller suitcase and then discovered that one of the wheels and one corner of the case was very damaged, so very rapidly went and bought another - thank goodness I discovered the problem now and not on my day of departure. At the moment the case is very heavy, so I removed my probiotic drink which I think the staff will either lose or I won't get it at the right time. I also removed a small bottle of magnesium tablets. I will look again at anything else - e.g. food supplies. On the way home though  I won't have food, books or magazines as these will be left behind. I will donate the books and magazines to other patients. I have to worry about my case on the way home as I have to manage public transport with very little assistance after an operation that is going to affect my left arm, ribs, breathing, and neck. I will try and coordinate help with Virgin Trains, but you need 24 hours notice to do this, and there is no guarantees with leaving hospital in time etc. Or myself and the doctors could think I need more time. Additionally, there is some building repair work going on in my flat when I am in hospital, so I definitely want to make sure my flat is clean for when I return home. It won't be suitable to return to dust and dirt. So I think my hospital admission will be about a week, possibly more, possibly less. My pain management regime using a Patient Controlled Analgesia will last 3-5 days, and then I will be phased down to Oramorph and my usual drug regime before home. Because of my EDS I tend to need this much time in hospital. I have also ended up in ITU after one surgery, so if that happens, I will certainly be in for longer, and in the case of this operation, if I need a chest drain, will keep me in longer. I hope I won't need a chest drain!!!

I am sorting things out for my cat, who will go and stay with a friend of mine who will bring her back when I am settled at home.

Tomorrow I have a therapy appointment and am also meeting the builders to find out anything else I need to know whilst they are in my flat.

On Wednesday morning, my carer will come in to do me one last hair wash/dry and make my breakfast so that I can be ready for a taxi to come and take me to the station for my train to hospital. When I get to hospital,  I will be going in another cab to get there, but it isn't far - I then have to find area A16 for Pre-operative assessment. Although I had a lot of blood tests and MRSA back in July, they will probably want to repeat some including perhaps my D-Dimer. They also need to measure and weigh me, do and ECG and I would like to have a meeting and discussion with my anaesthetist as I have some questions about putting me to sleep [I'm usually given a bit of midazolam when I go into the ante room], and I like to do my own count-down outloud before going to sleep. I also want to ensure they are fully organised with my post-operative medication regime that was created by my pain management doctor. Once I have completed pre-operative assessment, I will be taken to the ward where I will spend the night before surgery. I am hoping it will be the ward I end up in after surgery, so that I can properly unpack and organise my (many) things. I like to do this and it helps me to feel settled. I will then enjoy a 'last supper' and do whatever I can to keep calm and sleep before Thursday 12th September, which is the big day. I will do video diaries, but they might not be put up here until well after the surgery.