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. 

Days 5-7 Post Op for second surgery for TOS

On the Wednesday afternoon which was the afternoon which was on day 5, I had a complete meltdown. I just started to cry and felt incredibly depressed. A sister came by to say that they might have to move me again back to the short-stay surgery ward. I just didn't want to move as it was more or less agreed with the Reg that I would aim for home on the Thursday (day 6). As it was they were again able to keep me where I was, particularly as they had no idea when I'd be moving, and I was incredibly distressed. Other patients relatives made very unhelpful comments that they had been through more, when they had no idea of my personal story. It was insensitve and invalidating. Maybe I should have seized the opportunity to leave this ward which I would never want to encounter again. There was just no comparison between the level of care I received after the first to the second surgery, although my surgical team were very supportive, we agreed that keeping me in another night was not going to benefit me anymore, so I psyched myself up for my long journey to London, ensuring I had disability support by Virgin trains (really excellent), in place for day 6, post op.

In the end this was the best thing I coul have done. Although the day was long, I had also booked my carer to help with shopping, hair washing and to prepare me a meal so I could then rest at home. It was so good to be back at home. I had needed an extra night in hospital for the second side, and was so glad that my experience of the first side was as good as it was otherewise I am not sure I would have put myself through this again although it clearly needed doing. I therefore recommend again that a patient going through TOS surgery is not alone and has the support of family and/or close friends and does not travel on public transport either, unless they have support lined up. I took a taxi home from London Euston.

Here are my thoughts of day 6:https://www.youtube.com/watch?v=rp73TZ5MAAk 

Today is day 7 post-op. I slept well at home, and was so glad to see me cat, and have the support of my carer yesterday. Today I have done my spirometer exercises several times. Breathing is still difficult and I feel very tight. I have removed my dressing today, and it looks pretty similar to the other day (day 5) so here I am again. I am now using lots of Arnica as it really does help with bruising and am using scar oil on the area that doesn't still have steristrips attached to it. I mustn't pull those off!!!

I am still feeling somewhat emotional. It is hard doing this living alone, but would be too hard to travel far at this stage, and my family are not local. Rest and just watching TV are all I want to do. I feel that there is no doubt my second surgery has been a much harder experience than the first, and I do blame the ward environment for part of this, along with short-staffing and big delays in getting my medication. Now I am home I can obviously self-medicate in my own and usual way. I am so glad to be home. At least from heronin I have an idea of what to expect.

Ongoing recovery from my second surgery for TOS

On Sunday (day 3) post-op of my second surgery, I signed a form that was implemented by pharmacy on day 4 on the Monday, which meant I could take responsibility for taking some of my own drugs that fell out of the hospital's usual drug times and meant  I could take control for getting these medications on time and to relieve the pressure on the staff. This worked very well, and I just let them know I had taken them. I had no idea that this was a possibility.

On day 4 I had a chest x-ray following my need for use of the nebuliser (see previous post). The x-ray was completely normal. Here are my thoughts at day 4 https://www.youtube.com/watch?v=-gjGjl2zX74

This was how my wound looked at day 5 post op. It was covered up again and I was instructed to take off the white pads on day 7 which I did, taking care to avoid removing the steristrips which were still keeping the wound together. The wound is a bit bigger than it was with side 1 and there was more blood and bruising than for side 1.

Here are my thoughts at day 5 https://www.youtube.com/watch?v=4-YZSW8svS8  I am still having trouble with breathing. I have been encouraged to do my breathing exercise as per post-op first surgery, using my spirometer with balls. I was also advised to sit up more than I was doing and have the bed more upright. This helped a bit.

Next few days following my second and right-sided TOS surgery

As I said, I was not very happy on the ward I ended up on after my second surgery. It was under-staffed and my wait for drugs was often long.

In the afternoon of day 2 they shocked me by wanting to move me back to the 'short stay surgical ward, but I was very upset by this and fortunately had a visitor (a lady called Amanda, who I had met on the UK TOS support group) who spoke to the Sister in charge and the decision to me was revoked at least for the rest of the weekend. I was very unsettled and upset. Remember that I came alone to hospital and didn't have any immediate friends or relatives. I do not recommend this for future patients who attend for this surgery, whether it is for the first or second side.

I had some difficulty in breathing and over days 3 -5 had some nebuliser support, although my oxygen SATS were in fact 100%, I just felt so tight in breathing. Possibly the nebuliser support was psychological more than anything else, but neverthless it did help a bit.

One thing that I heard about between my first and second surgeries was a dressing gown from George ASDA that is suitable for post-surgery and holds drains and is only £12 - so I bought one, and indeed it was very helpful. One other difference between the first and second surgery was that I had the drain in for three days post op, as opposed to just one day after the first operation.

The next image is a bit gross but shows my drain in more detail:

I had a visit from Amanda again on day 3 post-op which was very supportive and kind of her. I cannot stress enough the need for support from friends and family after this surgery, or a friend.

Diary of my Second surgery for Thoracic Outlet Surgery and Recovery

I think that my feelings about going for my second surgery are already diarised, but here they are again: https://www.youtube.com/watch?v=yi1z916xibM

I travelled back to Wolverhampton on Thursday 21st November, where I attended for my Pre-op assessment and was then taken to a 'temporary ward' as I was travelling for London and needed to stay the night before my surgery, so I was taken to what they call 'Surgical Short-stay' and it was reasonable in there, if not basic. They didn't provide over-sheets, just blankets, so I asked for one. The food throughout my entire stay was reasonable and I had large type fish-fingers for my supper and two puddings! The staff were nice, and the next day I made sure that I showered early with the pink stuff which is designed to ensure there is no MRSA on my body. I was then given a gown and stockings. I was first on the list. Unfortunately I couldn't go to the toilet before theatre, but on the way down there, I suddenly developped an urgency and the theatre staff had to very kindly let me use the female theatre bathroom. I was so glad to do that.

Putting me to sleep was different to the first time as I had asked them to use less invasive gas mask, and having it just above my face to avoid suffocation, but then the anaesthetist went into how they were going to use different medications and a different approach to putting me to sleep which I just didn't want to know about at this stage, I just wanted to slowly drift off to sleep, which did actually happen, and I was a lot calmer having used the bathroom. I went into surgery and left recovery at about 2pm which was a bit of a shorter time I think (by about an hour) compared to the first surgery.

Highly unfortunately the ward I had hoped to end up on was full, so I ended up on a general surgery ward and this was nowhere near as nice as the experience I had after my first surgery. The ward was hugely understaffed and I had to wait 5 hours at one point just to get some more Oramorph. The staff were nice, but not as efficient and just spread too thinly. The atmosphere was also nowhere near as nice on this ward and I have made a decision to write to the hospital about the matters of staffing (I am fully aware of the shortage of nursing staff on the NHS) and the unacceptable wait for medications on numerous occasions.

I was, fortunately, generally comfortable on day 1 because I had a lot of local anaesthesia as per first surgery, but unfortunately my surgeon was unable to match the scarring from side 1 to 2, he tried, but I guess solving the problem is more important.

I was told I absolutely needed this surgery and that they had found a very similar situation in side 2 to the first side, if not possibly worse, although my symptoms had always been less on the second, or right side.

Here is what I say on day 1 post op https://www.youtube.com/watch?v=JqTEkA1hcJk

This is me on the ward on the afternoon of the surgery, needing a bit of extra oxygen which is perfectly normal.

Two Days before Surgery

https://www.youtube.com/watch?v=yi1z916xibM
It is my last day at home before leaving early tomorrow to travel to hospital for my second surgery for Thoracic Outlet Syndrome. Fortunately I think I have everything in hand - all clothing packed, medications sorted, letters and documents and tickets for travel all sorted. I must remember my dental splint in the morning and my mobile phone charger - other than that I think I am ready! I am quite fatigued today, so have had a nap and intend to have an early night as I will be up early tomorrow.

The next time I write up this blog will be retrospectively but with a lot of video diaries as before. I hope my next update will be that I have a bed and hopefully on the same ward as before.

3 days until next Surgery - 10 weeks since last surgery

So here I am on 19th November, 3 days before my next surgery, and just under ten weeks since the last surgery. As you can see the scar looks extremely good now, and by next summer should hardly be visible. I am still using scar oil and massaging, and my physiotherapist also does massage work around the whole arm, shoulder and neck. There has been a huge improvement in this left side since surgery, and although the right arm isn't as symptomatic, I hope it will be beneficial in other ways.

I am packing up my suitcase and getting everything ready for my next hospital admission. I am due to arrive on Thursday 21st November for 2pm at the Pre-Op assessment clinic, and will then be admitted to hospital properly subject to bed availability. I really hope there will be no problems, and the icing on the cake would be to end up on the same ward as I did for the first side, as they were superb in there.

I will blog again when I can, but will take video diaries whilst I am in hospital. I am feeling a bit more nervous because the first side went so well, so there seems a lot of pressure to ensure it all goes as well the second time - probably on my surgeon more than on me!

8 weeks/ 2 months Post Op

Yesterday I had my review with Mr Garnham - so a day trip to Wolverhampton. I had a very interesting chat with a man involved in health and was interested in developing patient stories/communications on their health and learning about different health conditions.

When I got to the hospital, it said in the board that Mr Garnham was not going to be in clinic, so I was very disappointed, but I heard a nurse talking and saying, 'she has come all the way from London', so I was very lucky and Mr Garnham popped over to see me, having been giving lectures. He was very pleased to see how well I was doing at this stage, and I had to complete a form - a repeat of a form called DESH about upper limb function, one that I had completed for Rob in Bristol back in May - I think the scoring was significantly improved.

Whilst my right arm is not as affected as my left one was, we are still going to proceed as there is still an occluded subclavian artery, and in fact the scalenes were also more affected on the right, so we agreed that to resolve it would be better. So I am coming in on Thursday 21st November for pre-op assessment and admission because of the travelling and my surgery will take place on Friday 22nd November - 10 weeks after the first surgery.

There was a poster up asking for patients to come forward to give talks to junior doctors and I volunteered myself as I have documented my journey all this time and am interested in this exact type of work, and Mr Garnham seemed keen, so hopefully he will keep me on file for the future. Perhaps when I return for the review of my right arm.

I keep worrying it won't go as well the second time, or that I will have a pneumothorax (hole in the lung) following surgery. Maybe because apart from the chest pain, I did so well the first time round.

I am still doing physio, although there has been no further change to my exercises, and days I don't play my recorder I use my spirometer for breathing work.

A bit of a flare up at six weeks postop for Thoracic Outlet Syndrome

https://www.youtube.com/watch?v=oAg04vNrC_c

I have had a tough week - and although my chest pain has worsened again, the area around my scar was a little redder, I have had all over bodily pain and extreme exhaustion. This is now mimicking more Fibromyalgic symptoms than simply due to my postop situation. All I seem to want to do is to sleep a lot, and I am needing a great deal of pain medication again. I have had to return to the breathing exercise with the balls again (Spirometer) because I haven't played the recorder for a few days. I have also been doing my physio exercises, although the one for serratus anterior is making my back pain worse, so I can't win. I hope I will come out of this flare up quickly!

Surgery date for Second side

Despite all the drama with my flare up, I spoke to the surgical waiting list administrator and my surgeon has agreed that I can have my second surgery on Friday 22nd November, coming in on the afternoon of Thursday 21st November for my pre-op assessment and because of the distance I am travelling. This is all subject to my surgeon being happy with me when he sees me on 6th November for my post-operative review. If he is, and everything is settled again, I think that will make it ten weeks between operations. I am feeling somehow more nervous about side 2 because side 1 went so well, and it feels like a lot of pressure for the second side to be as good and for me to heal and recover as well as I have. Also my second side is my dominant arm, which worries me a little more.

I have physio tomorrow - so will review my new exercise and see whether I need stronger weights for the rotator cuff exercise.

Six Weeks Post-Op - Flare up due to overdoing things.

Last Friday (when I was five weeks post-op), I decided to go and stay with my mum for the weekend, who lives near  Oxford (I live in London). This involved carrying an overnight bag, and some travelling on the tube, then a coach before my mum met me at the bus stop and drove me to her house. Most of the time I was not carrying the bag, and was as careful as possible to keep my packing light- something that is not one of my stronger skill-bases. I seem to like to bring everything except the kitchen sink, as the expression goes. But this time I couldn't because of my recent TOS surgery. I bought all my different painkillers except for Oramorph. In fact I hoped I wouldn't need many of the other painkillers because I was looking forward to having a few glasses of wine. Not getting drunk, just one or two glasses with meals. (This makes it sound like we are alcoholics). I was looking forward to seeing my mum, as I had not seen her since just before my last surgery as my surgery took place a long way from either London or Oxford, it being in Wolverhampton. In case you are wondering I take several different painkillers as I have multiple conditions including hypermobile Ehlers-Danlos Syndrome and Fibromyalgia. I also have functional gut problems and need medication for that also. Basically,  I rattle, although once my TOS is completely healed, my second TOS operation is done and my back is sorted I might finally be able to reduce some of these drugs. If Brexit goes ahead I may well be forced to, if supply issues are a problem, but that is not for here!

Anyway, Friday night I enjoyed about 1.5 glasses of wine with a roast chicken and my mum's good company and we had a nice evening and I went to bed, but did not sleep really well due to cramp on my "numb" lower left leg.

Saturday we had some wine whilst watching the dreaded Brexit debate and vote and then we went for a walk. For the last 18 months I haven't been able to walk as far because my left leg is numb at the L5 disc dermatone, so the front and side of my lower leg is numb due to the L5 disc compressing on the nerve at that level - orginally I had severe sciatica and had a caudal epidural to numb the pain, only the result was permanent numbness, but it is still preferable to the pain. I was going to have surgery at the beginning of 2019, but the disc prolapse had miraculously shrunk. However, months  of physio and exercises have not improved things and my back hurts a great deal. MS needs to be ruled out by a Neurologist, otherwise there is talk of surgery again, possibly spinal fusion, or maybe removal of that disc. My mum and I were half-way on our walking route and I needed to go home. I was in a lot of pain, plus swinging my arm causes a lot of pain still for long periods of time. I can wear a sling at home, but it tends to put me off balance in walking because of my numb lower limb.

We got home, and we had supper a bit later and a glass of wine. By now I had missed several different doses of medication because of the pleasure of having some wine, but I was starting to realise that the next day I probably wouldn't be able to drink as it still seemed I needed the painkillers more.

Later that evening after watching 'Strictly' I had a bath, a very hot bath, and then watched Casualty before taking my evening/night meds and went to bed. I couldn't sleep. I was wracked with pain all over my body. This was more than just TOS pain. At 1.30am I remember trying to do some Bowen work on myself - I used to be a Bowen practitioner until I retired in 2017. This seemed to help, and eventually sleep came.

I was due to stay at my mum's until Monday morning, but decided to go home on Sunday afternoon because of pain and because I stupidly hadn't packed my Oramorph. There was no more wine, which was a shame. Just tablets. My mum gave me some bulbs to take back for my garden and some bolognaise sauce (frozen), as I am a terrible cook. I then returned home to London - progress slowed by a March at Marble Arch where I got out and took the tube home.

The rest of Sunday was uneventful. I did my physio exercises both weights and the new exercises I had acquired last week (week 5) for serrator anterior, and I played the recorder actually for about an hour - so had done my 'breathing exercise' and then I went to bed and slept moderately well.

On Monday morning I saw my therapist, which involved going into town. After that, I had a very quiet afternoon, and fell asleep for about an hour after supper I was so tired. I then had a bath and went to bed 'properly' watching a DVD, only I never ever fell asleep. I often take naps, so it wasn't that. I saw every single hour pass by. Had a midnight feast of cheese and almonds. I fell asleep at gone 7am and then had to get up for my carer - it was Tuesday morning. I felt grumpy and my chest was in terrible pain when I actually got up. We went shopping after washing my hair (which my carer does for me - the hair and the shopping). My carer then left and I had a few admin tasks which were not too difficult, but needed doing today - mainly sorting out appointments - (of which, more later).

I was, for the first time having radiating arm pain again and was concerned enough to speak to Ali - Rob's secretary about what was going on and he very kindly replied later in the day. The main gist of his email was that unless I thought it was cardiac, which I didn't - he said, " It does sound as though you’ve strained yourself and probably irritated the joints where your ribs attach to your sternum. As we’ve previously discussed I must also mention to you that if there is any doubt whatsoever as to the possibility of a cardiac cause you must discuss this with your GP.

Assuming a musculoskeletal strain, then you are right in thinking it’s rest, analgesia and heat until it settles down. I do not suspect you’ve done your surgery any harm and have no concerns with regard to some symptoms in the little finger." I messaged my own physio too - (my physio has regular contact with Rob). Rob asked me to let me know how I get on in a few days time.

The motto of this story is that you may think you are quite fine, until you are taken away from home surroundings and have additional stressors (things to carry) and that you still need ALL your medication - even if it includes orarmorph, which mine does. I then overdid it in walking too far. I didn't sleep enough or take any naps, and whilst wine is very nice - I should have just chosen to have it the once on Friday and return to my medications the following day. Rob also mentioned I could have used a wheelie suitcase - although this seemed too much just for the weekend. 

So I have had a little flare up. Last night I slept like a dog and my chest pain is much better again today, so I shall resume my exercises, but I am still in some pain, so again, will be taking my usual medications. I was fooled or lulled into a false sense of security as that was the first time I had gone so far away from home. I need to remember I am still in recovery, but fortunately have done no lasting damage. I did manage to enjoy myself some of the time, but it will probably take me the rest of this week to recover completely - particularly sleep. My other conditions cause fatigue, but important to have a quiet week now.

One Month Post-Operative for Thoracic Outlet Syndrome - Left Side

I am now 4 weeks or one month post-operative from surgery for left-sided Thoracic Outlet Syndrome. My scar has been a little itchy in recent days, but I am still regularly applying scar oil on to it and doing stretches in the area and massaging the scar to ensure that it heals underneath ideally without adhesions.

I still have some chest pain although the area affected is smaller than it was 2 weeks ago and again I massage that in all directions and combined with pain relief, that seems to help. It would be interesting to find out more about the healing involved in the chest pain - e.g. what is going on - new nerves remapping etc.

I was given my first exercise just over a week ago involving a rotator cuff exercise. lying down doing ten reps and 3 sets of ten per day. I haven't quite got control of the movement on descent, but that is partly because of my hypermobility and it will take me time to build up to strengthen the whole range. I am seeing my physio tomorrow, so he might give me a new exercise to build on that, or something entirely different but to work on strengthening my very weak shoulder girdle.

I have been able to play the recorder a few times - sometimes for an hour at a time and this has gone very well and really become my breathing exercise, rather than using the balls anymore, although I should check whether I should still be continuing with that.

I made contact with the surgical administrator this week and she has pencilled me in on 22nd November, pending agreement from my surgeon. I asked her to pass on to my surgeon that I was/am doing really well and that hopefully I will be ready for the second surgery by that time. I would just love to get all this finished by the end of the year!!!

This week I saw my pain doctor who had always believed my pain was physical and structural and that I needed surgery and she was utterly thrilled about how this surgery had gone and I offered to create her a presentation as Thoracic Outlet Syndrome is not well known about and she can use it in her lectures for junior doctors!

Three Weeks Post Operative for Thoracic Outlet Syndrome Surgery

Firstly, this is video footage of me at 2.5 weeks post-op https://www.youtube.com/watch?v=tXnoWUF04U8

I can't believe I am now 3 weeks post-op, the time seems to have flown. It has been a bit of a trying week with the chest pain now being the worst pain, there is not much pain in the neck and around the scar, and no pain at all down the arm, which is wonderful. My neck still feels a bit tight, and this was verified by playing the recorder yesterday, but I managed this despite the chest pain and it seemed my left hand was warmer and I found playing the lowest few notes  much easier than prior to surgery. I also experienced  no repercussions today from playing for much too long really for a second go on the recorder. Here is my scar at 3 weeks post-op:

Two nights ago I ended up in A&E on the back of a few days of having diarrhoea for a few days. Given my complex medical history, including a colon resection NHS111 decided I needed to get myself to A&E in case I had overflow diarrhoea and a massively blocked colon. As it happened A&E was very quiet on the back of a filthy day, with non-stop rain. My bloods were normal, in fact the doctor said he hadn't seen anything quite like it before, he said they were, 'outstanding'. I had several medications including one for my chest pain which the next day turned out to be for my stomach, but had been given  IV in A&E and seemed to help with my chest pain. The next day I got an alternative drug that protects the stomach lining and was told to take it to see if it helps, but sadly it hasn't. Whilst I was in A&E I also had a chest x-ray and was able to see where my first rib had been removed on the left, which as fascinating. In fact the whole ribcage looks like a cathedral vault to me. It is really a thing of great beauty. I also had an abdominal x-ray which showed my colon was empty, although my small bowel had food in it, but definitely no overloaded colon which was very good news. I was then discharged.

I have slept very well this week and apart from the chest pain, I feel that I am going well. I rung Wolverhampton, and my next or review outpatient appointment will take place on Wednesday 6th November, which will then make me at least 7 weeks post-op, and I hope a decision can be made about my 2nd operation, which I want to be as soon as possible after that date, pending the chest pain being gone.

I have just had physio and my physio did more work on my chest and then gave me my first strengthening exercise to do involving holding a weight of 1kg or a water bottle and doing rotator cuff curls. I need to do ten reps 3 x a day, but do not need to use my full range of movement on the descent until my strength builds - I have the range of movement for this, but not the strength yet, but I will. This is the first exercise that will start to strengthen my arms for overhead movements - e.g. hairwashing. I am only to do this on the left side [the operated side] as it will be a waste of time yet on the right whilst I haven't yet had surgery.

I think that by my next appointment the chest sensation will be improved. I am already starting to use less oramorph and back to my usual drug regime, whilst continuing to do gentle moves myself on the chest area.

Being able to play the recorder again without repercussions was a real gift, so I will continue with that, but not go overboard as I don't want to do too much too fast too soon. I will continue with the breathing exercises.

Video footage of me at 3 weeks post-op: https://www.youtube.com/watch?v=4ktrZErF3hM

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.

Two weeks to go until Surgery....

I can't believe how time has flown since I visited New Cross Hospital in Wolverhampton back on 10th July. I am now being admitted for remaining pre-operative assessment checks, to go through all my medications, to discuss with my anaesthetist my post-operative pain plan and anything else that has not yet been covered. I will then be admitted to a ward for overnight. Whether I then return to that ward post-operative will depend upon whether I need an interim admission to High Dependency or ITU, post-operative.

I am now starting to prepare for hospital. Making sure my freezer is stocked with the right foods for when I return. Whilst I am away there is some internal building works need to be done in my hall and bathroom, and they also need to get scaffolding through my house to do some work further up the outside of the house - all because of subsidence. The work is expected to be completed before I return, and the company doing the work are going to pay for my cleaner to do a deep clean for before I return home. I absolutely hope that this all works out and that the work will be complete so that I can come back home to a restful and quiet [and clean] environment.

In addition to food stocks, I am making sure I have got all the right medications that I need for hospital, and for here, and things like books, magazines. I have also treated myself to some new tracksuit tops and bottoms and a new 'V' pillow which everyone says is really helpful for post-operative recovery. I am also trying to organise for my carer to come in daily, possibly for up to two weeks, to ensure that I can properly manage once home.

In terms of how I am feeling about the surgery itself, I am starting to feel a little nervous, but that is totally understandable. It is a major surgery, and I have never had one like this.

I have already now met my new physio, and he is absolutely lovely. He actually thinks that I should respond really well to the surgery, and is very pleased that Mr Garnham is going to add botox to my pec minor muscle, rather than simply remove it. This should also relieve my pain. We will be working very closely together once I get back home.

It is a big deal for me going to a hospital I don't know, that is two hours away by train, with no hope of visitors, and to manage to the journey by train back home in a lot of pain, so I am quite trepidous, but also hopeful that things might eventully improve after the surgery. Then I have to go through it all again on the right side.

In terms of the D-Dimer, another surgeon reviewed my levels and said becasue I am a neurological TOS patient, it was OK that they are a bit high - but I never got that confirmed directly from my own surgeon, although he was made fully aware. The very worst thing that could happen now is that my surgery would be deferred or changed, but I hope that they will prioritise me as I have had to wait a few extra weeks because of the summer holidays. I will do some video postings when I am in hospital.

Problems with blood clotting 'D-Dimer' Levels

One evening in mid-July 2019 I had chest pain. It really felt quite scary and as if I had been kicked in the chest. Since I had both PoTS and a condition called Thoracic Outlet Syndrome [TOS] I wondered if it could be related to either of those, and then I had another wave of severe pain and felt that it would need to be a 999 call. The operator said that there might be a long wait, but an ambulance turned up in 5 minutes. Although I apparently looked pale and clammy my observations and ECG were both normal. However as I begun to tell the story of my medical history the ambulance crew felt that I definitely needed a trip to A&E.

Whilst at A&E I had repeat Obs and ECG which continued to be normal. It took three people to get any blood samples from me, and this significantly delayed things. Fortunately my bloods were normal and especially the cardiac ones, but there was a blood clotting factor called 'D-Dimer' which was abnormally high in me and so they had to do a CT scan to rule out the chance of a blood clot in my lung. They never considered that my subclavian artery is occluding both sides, as per my TOS, so they might have not got an entirely accurate picture. Anyway, the CT scan was normal, and I was sent home. It was thought important to tell my TOS consultant about the D-Dimer as a normal result is below 250 and mine was 470. I was asked to do a repeat test which had to be done in ambulatory care - an area where you go if you are able to walk and have problems that can be dealt with in an outpatient situation or setting. Unfortunately the next test showed that my D-Dimer had increased to 650, so I was sent back to A&E and made contact with my surgeon's colleagues as he was away, and in the end the outcome was that I wouldn't need blood thinners [as I had thought], as the CT scan was negative and because my problem was neurological.  Nevertheless it was worrying because there was no other proof that I didn't have or not have a blood clot elsewhere. A D-Dimer can also indicate infection. I had a chill which lasted 24 hours and I was then fine. I had never recalled having problems with my D-Dimer, but after some considerable emailing and trying to find out answers, I did find out that the surgeons were not concerned by the high D-Dimer, and that this would not affect my surgery, which was my main concern. However it all took far too much of my time and I often felt at cross-purposes with the medical team and doctors not listening to my concerns about my occluded subclavian artery. They maintained in the end they were treating me for neurological problems. I sincerely hope that my arteries are OK.