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.