5 weeks post op second side for Thoracic Outlet Surgery (15 weeks post op first side)

https://www.youtube.com/watch?v=Gpx8mVQ8HK0 
I am now at 5 weeks post operative for my second side surgery, and 15 weeks post-op for the first side. Interestingly, and annoyingly I have started to have chest pain again and pain at the back of my shoulder on the first side, in fact at the moment, the pain has become worse on the first side to the second, barring the feeling of pressure which remains worse on the right (2nd side).

I have just seen my physio and he is not clear why this has occurred. I explained how I'd lifted a heavy bag of presents on Christmas day using the my right arm (the 2nd surgery side) and also I had two vet visits within the week, meaning carrying a cat basket to the taxi and then inside the vets. Tragically my cat had to be put down yesterday, 27th December. She had a lost a huge amount of weight even since her visit on Christmas Eve. She was just shy of 10 years. Glispa was everything to me. She was the gentlest and most sweetest soul that walked this earth. Her loss is just another hammer blow to everything else that seems to have happened lately, and will take some time to recover. I think that of course this might have implications for my pain - emotional pain can be just as bad a physical pain. I can't stop looking for her, and the first night without her was very hard.

I digress. On a more positive side, I can now do up to 3000ml on my spirometer - that is an improvement up on last week, where I was 2-2500ml. On top of that I managed an hour and a quarter of recorder playing on Boxing day, which went pretty well, considering how out of condition I am and my lack of overall practice over the past year.

My scar is now really healing well, particularly since I have started to use lots if bio oil on it. In fact, ironically, the left side looks more obvious to the right, but the right side is a longer scar.  I am still using the lidocaine patches, but might be swapping to the left from tomorrow for a bit. Here is a picture - it doesn't really make the scars look very clear:

My physio is now away until the middle of January. I am to restart the rotator cuff exercises on the left with a 1/2 kg bottle and work up again, once the pain has gone from that side.

I  have been using arm slings to off load, and this has made a difference, particularly to the right, so I am now giving the left arm a rest again. Healing is strange. It is not a linear process at all, but seems to go up and down in a spiral fashion, and sometimes I seem to slide back a bit.

I am hoping to see my surgeon early in 2020, so will mention to him the problems have restarted in my left side. It could be the nerves to pec major and minor - and it again raises the question of whether I do need botox, but that can be discussed, and of course ongoingly with my physio.

Christmas week has shown some overall improvements to my lung capacity, but strange backwards changes to the left side. Hopefully following today's physio it will settle again. I am starting to feel more like myself and seem more capable of walking a bit further too, which is good news. I have definitely turned a corner, especially to the right side.

4 weeks Post-Op for my second surgery for Thoracic Outlet Syndrome

I saw my physio (yesterday) and the first thing he said was that I had lost a lot of weight, particularly from my face. He was pleased to see that I had retained nearly full range of movement in my right shoulder and that there was no evidence of frozen shoulder. He suggested I did some gliding stretches of my neck and arm and that I continued with my spirometer exercises. He also did some massage on both my arms//shoulder, especially the right, and I will see him again.  He said that I was not yet ready for any strengthening work until I had significantly reduced my pain relief, although I have reduced my oramorph over the week.

It is now almost Christmas week, and I will be spending it largely alone an not going to Oxfordshire as usual to my family and close friends for Christmas. It was decided by Rob, the expert physio I  saw back in May that as much as he'd like to be proved wrong, he felt it would be much more sensible to stay put and not travel at this time. As a result I am going to spend Christmas day with some very good friends of mine who live locally. Mum is coming to see me on Friday 27th and will help me with shopping and hair washing as my carer is now away and my doctors couldn't get me a stand-in carer.

Here is what I say at 4 weeks https://www.youtube.com/watch?v=uEcVHVDhX1Q

Here is what my scar looks like at 4 weeks - the white patch is the lidocaine patch for pain relief:

I have had two short attempts at playing my recorder over the last 2 days. The next week will be about hopefully reduced pain levels  and a reduction in the heavy pressure lying on my chest. It won't be the Christmas I had hoped for, but hopefully will be enjoyable and low key. Lots of rest is still really critical at the moment.

2-4 weeks Post Op Second side (right) for Thoracic Outlet Syndrome

The last month has been very hard indeed. A radically different state of affairs to my left arm, first side.

One thing that I think that definitely contributed to this was that my pain was not well managed from the get-go and immediately post-operatively. I reluctantly wrote to PALS about this situation, particuarly as it was so radically different to my first surgery and post-operative care.

I was home for a total of 4 nights and on the morning of the 5th day at home, 12 days post-op, which happened to be my birthday (2nd December), my spirometer function declined significantly. A GP gave me a puffer, but when that didn't help I spoke to NHS11 and ended up in my local London hospital again. I spent all night in A&E and was transferred to a reclining chair at about 3am. My D-Dimer levels were extremely high -  much higher than in the summer (see earlier posts on this topic back in July). On Tuesday morning I was taken to ambulatory care where they did all they could to persuade me to go home, but I just said that I felt too strangulated and unable to breathe and it wasn't safe for me to be like that on my own, plus the pain wasn't well managed.

At around 5pm I was finally taken to one of the medical admission wards and was in a 4 bed bay. I finally managed to have shower and get changed, having been in the same clothes for 18 hours or more. I had supper and was extremely tired.

In the morning I was moved to a side ward - they said this was because they needed to watch another patient more carefully, but I now think it was due to infection control because I had only been in another hospital a few days prior to this admission. I wasn't in this room long. My carer came and bought in more pyjamas and washed my hair and then later in the day I was moved to the heart and coronory care unit and again, had my own room, but unfortunately this was not ensuite and I had to use another bay for the toilet which one patient was extremely upleasant about. Fortunately she was discharged the day after.

On the Thursday Mum came to visit me and kindly bought some fruit and more soap (I am the queen of soap) and my birthday/Christmas present. A volunteer had kindly wheelchaired me down to the shop as I was unable to walk due to lack of breath, and then I saw mum in the atrium on the 4th floor, but she wasn't allowed to come in and see me as she was a bit early for visiting, unfortunately. When she did come we only had just over an hour as it was already getting dark and she had had a long journey here and then had to go through it again. It was really nice to see her.

By Friday I had seen specialist chest physiotherapist and she gave me a new spirometer to use to mine which kind of made it easier as I was feeling depressed watching mylack of progress at the same time to my first surgery.
https://www.youtube.com/watch?v=3T4xR_rKLVo&t=8s

I stayed over the weekend at the hospital and was a bit more relaxed as the doctors weren't pressurising me all the time. On Monday I saw my doctor again and said that I felt I needed another 2 nights in hospital as I still didn't feel well enough. This was received just about OK,but the next day she came back and said they were simply desperate for my bed and what would it take to get me home? I explained my carer could help on Wednesday in terms of hairwashing and shopping, but that on Tuesday I could manage food-wise if they could send me a snack box home, which they kindly did. I also ate my lunch in hospital, so had a main meal. I took a taxi  and went home, still feeling very rough, in a lot of pain and not breathing well, but better than when I had gone into hospital.

The hospital had arranged 'Virtual Ward' services for me, so a nurse came to visit me at home and he was with me about 40 minutes and then I got a call about 2 hours later saying I needed to come back into hospital to see one of the ambulatory care consultants. I asked if I should bring in an overnight bag, and they said to, "just in case", as I had nobody else who could do this.

In the end I didn't see a consultant, although my doctor conferred with the consultant and they increased my orarmorph to 15mg every 2 hours and send home. I was quite concerned by this and spoke to my pain consultant who said that this was the absolute maximum of medication I could have at home and that they needed to investigate the cause of my pain, which  I relayed to the hospital, but didn't hear anymore until the early part of the following week. This is what I say at the  3 week post-op mark for my second surgery: https://www.youtube.com/watch?v=5h9pcaHfQsU Note how much of my upper chest muscles I am using in my efforts to talk.

The weekend passed uneventfully, but I was very tired. I had a shock when it was realised by the pharmacy that I was overdosing my oramorph taking 15m1 which is 30mg of Oramorph- double what I should have been on. I was lucky that this was picked up quickly and remedied.

On the Monday I had an appointment with my GP. I was rather upset having had an argument with my mother, but my GP prescribed Lidocaine patches which I wear 12 hours per day. These have been a real help with the burning sensation in my chest, but not in the feeling of pressure. He also prescribed more Naproxen and some Capsicum cream, although this is unfortunately no longer available. We had a very quick chat about my back, but my GP said that I could be in pain for weeks and how painful a broken rib is. He was very nice, and I am seeing him in a week for a review. I mentioned to him about the Ormorph blip, but he was happy for me to continue on the correct dose.

Later in the day I was still waiting for the ambulatory care doctor to have spoken to my pain consultant. Finally I caught up with her, and she said it was up to my consultant surgeon to arrange any necessary investigations and tests. As it happens my surgeon called me from New York, and said that I could have some element of chest infection because my CT Scan mentioned 'atelectatic' changes to the lungs and to keep an eye out for infection - e.g. reduced sats, temperature, not being able to talk in full sentences. He said he wanted to see me next month. The ambulatory care doctor was glad I had spoken to my consultant and echoed the advice I was given.

For information about Atelectasis https://www.msdmanuals.com/en-gb/professional/pulmonary-disorders/bronchiectasis-and-atelectasis/atelectasis

I had one extremely good night's sleep, sleeping 11 hours - more I think from emotional exhaustion. At 4 weeks post-op I saw my physio.

Days 8 to 9 following my second side surgery for Thoracic Outlet Syndrome

Firstly, here are some of my thoughts from day 8 - mainly about my struggle to mash some avacado and butter some toast (OK the butter was hard) - caused a lot of pain https://www.youtube.com/watch?v=o2saYwuFLn8&t=42s

I was still struggling to breathe a lot yesterday, but that has become a lot of easier today, but only if I remain at home. I went for a walk locally, not far at all with a cheesecake craving and could find nothing I really wanted at either Tescos or  Sainburys. Obviously everyone else has the same idea. Bought some of the pots puddings that had cheesecake and lemon, but I wanted an all white one with biscuit base. Nevermind.  I will try again tomorrow. As it is my birthday tomorrow I feel I deserve a treat!

I did manage to have a little go on my recorder, and it wasn't bad at all just for a first attempt. I might try again today.

I was a bit naughty and this morning decided to remove my remaining steristrips in the bath so that I could see how the wound looks - I knew the skin had closed enough to risk this, but obviously it is still very fragile at this stage underneath, so I need to be careful with any carrying.

The wound is looking very neat already at day 9 - there is still some bruising, and I am using lots of Arnica and started to use Bio Scar Oil today, as both products did a very good job of the first side scar. I also did some Bowen work on myself to faciliate the breathing difficulty and general pain and heaviness. Today is the first day I feel less emotionally fragile.