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!
Saturday 26 October 2019
Wednesday 23 October 2019
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.
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).
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.
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.
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.
Friday 11 October 2019
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!
Thursday 3 October 2019
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
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
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