When I saw my physio last week he had taped my shoulders and rhomboids to activate them and to try and deactive my chest muscles. Unfortunately I was allergic to the tape, which had relieved my symptoms by about 25%, so it had to be removed.
I was supposed to hear from Mr Garnham, my surgeon, but he didn't call me all week, so I hope to hear from him next week.
On Tuesday 21st January I saw my wonderful pain doctor - Dr Peat at King's. She requested that I must reduce my oramorph as the dose was too high for home, so I have now cut to 7.5mls every 6 hours - so that is 30mls in 24 hours. In between those doses I take dihydrocodeine and that is providing me enough pain cover. Dr Peat couldn't understand my physiotherapist's request for a dexa scan (neither could my GP who I saw the day before) so Dr Peat is now referring me for an MRI scan instead - but I bet by the time I have that, things will have moved on (hopefully in a more positive direction) again. Dr Peat also requested that I have a kidney function test, as the last one in 2015 showed 87% function. Unfortunately the news was not ideal as my kidney function has now dropped to 77%. Dr Peat has said that I must max out Naproxen at 750mg per day and drink lots of water with it to help my kidneys. I need a re-test in a week's time. She made no other changes to my medications at this time because she will likely wait for the MRI result.
On another note, my facet joint injection due on 13th February was cancelled. This is due to be rescheduled. I hope it isn't too long a wait for that.
I had good news from social services who have agreed to my having a hospital bed at home. The only snag is that it won't have side supports,and I have to order those myself, which is a nuisance. I don't mind the cost too much, but it would be easier if they could order the bed with them and invoice me separately. But no!
Lastly, I am about to get a new cat - he is arriving in just under an hour. I can't wait to meet him He will be fostered by me initally to ensure we like each other, but that should be a formality before I then hopefully adopt him. I think this will give an injection of positivity and love.
In the meantime I also saw my physiotherapist yesterday who has given me an exercise for my rhomboids using a yellow theraband. He also did some manual work on me. I was quite sore after it, but think I can manage the exercise, just about.
Saturday, 25 January 2020
Sunday, 19 January 2020
Sterno-costro-condritis - 8 weeks post op 2nd side, 18 weeks post op left side - Thoracic Outlet Syndrome
Here are my thoughts by Youtube: https://www.youtube.com/watch?v=ol0os9JqsQE
I went for physio on Friday 17th. The last time I had physio was on 28th December, where my right sided first rib ant scalenectomy was finally healing, but I had unfortunately started to experience chest pressure and more pain again to the left arm including some radiating left arm pain into the ulnal nerve root, similar to prior to my left sided surgery in September. I had been making some good progress in starting to strengthen her rotator cuff and serrator anterior, and an exercises involving use of a (stretchy) band.
If
I have a further separate issue of the cardiac-type pain, which
apparently has been suggested as Acute Coronary Syndrome, (although this
is now unlikely). - she has been advised to dial 999 again or go to
A&E, but it would have been much better if A&E had properly
investigated me in the first place - particularly after a second visit quite soon on
the back of the first with no exercise that triggered the symptoms.
I am seeing my GP again tomorrow, and my physio is sending an email which I will then send on to my GP, Rob, Mr Garnham, the Pals team at the Whittington and to Dr Peat.
It is not thought tha the surgery is particularly relevant to this episode - factor, but not a cause. Mr Garnham had mentioned costochondritis - but that is just odd ribs whereas this is for the whole sternum and has made me more and more round-shouldered and pigeon -chested in order to offload the pressure and pain in my chest. It is also yet another diagnosis and more work to correct.
I went for physio on Friday 17th. The last time I had physio was on 28th December, where my right sided first rib ant scalenectomy was finally healing, but I had unfortunately started to experience chest pressure and more pain again to the left arm including some radiating left arm pain into the ulnal nerve root, similar to prior to my left sided surgery in September. I had been making some good progress in starting to strengthen her rotator cuff and serrator anterior, and an exercises involving use of a (stretchy) band.
The
following day I text my physio to say I had experienced some severe
chest pain, radiating to my right neck, head and back, centralised
chest pain worse to the left and I felt nauseous. This episode lasted
long enough for me to call 999, and the ambulance crew took me to the
Whittington where she was kept in overnight and discharged
without seeing the pain team or any other medical practitioners, other
than from the ED. I had understod I was to
be admitted, but this did not end up being the case.
I
continued to suffer severe chest pain, notably moved to the centre an
left of centre, and a feeling of extreme pressure "like an elephant has
trodden on my chest", or "like there are 4kg of weights on my chest".
I also had radiating left arm pain.
Fortunately
on 8th January I was able to see the consultant Mr Andy Garnham (as
an emergency), from New Cross hospital in Wolverhampton NHS Trust who
had performed my bilateral surgery and advised me to stop playing her
recorder forthwith, and to completely rest the area. I also had a
chest x-ray and the proposed plan was rest and review in 8 weeks as an
outpatient, then possibly have botox surgery on pec minor on the left,
as it was extremely tight, and if this failed, then further down the
line, removal of pec minor on the left to off-set the radiating arm
symptoms. This was a very long trip for me, as it was the furthest I had travelled since being discharged after my second surgery in
late November. Mr Garnham advised me to try Capsicum cream despite my saying it was nationally unavailable. Mr Garnham also advised me to try Zacin, 0.025%, also unavailable.
I
continued to be in severe pain. I was rightly concerned about how
much Oramorph I was now taking from home - there was a protocol for
20mg 2 hourly as an inpatient, but at home I am supposedly capped at
60mg, but I'd been taking more like 120mg in recent weeks. The effects
of the oramorph are short-lasting, and my other drugs are not
having much effect - paracetamol, Naproxen (back to 500mg), Diazepam
30mg per day, and 36mg of Tizanidine per day.
On
the morning of Monday 13th January, I suffered a further episode
of extreme squeezing of the heart area, and radiating left arm pain,
left neck and head pain and left upper back pain followed by
accompanying nausea. This lasted about 2 minutes, whilst I was on the
phone. I did nothing more about it as I was seeing my GP later in
the day, but was extremely upset by the time I saw him and he printed my notes and a letter for A&E offering to call me an ambulance,
but I felt a minicab would be quicker. The GP also called ahead to
speak to the medical oncall team who had accepted me by the time of
her arrival to the Whittington about 20 minutes later.
A&E
ran the same sorts of checks as before - ECG, bloods and a chest x-ray
were all normal. The medical F2 doctor assured me I was for
admission but there was a bed problem so I again spent the night on a
trolley, later being transferred to a hospital bed at around midnight,
but got very little sleep, and had not eaten for 24 hours. In the
morning, a consultant visited me to say I was being discharged, which
I questioned as my pain had not been addressed, so the consultant
agreed the pain team should see me and a decision be made. I fell
back to sleep whilst I waited and at about 10.30am was suddenly taken
to the medical admission ward and was understandably rather confused.
The staff, who I'd met before on a previous admission in early
December were still preparing my (side) room, which had its own bathroom.
I said that I couldn't wait to have a shower having been in the same
clothes for 24 hours, and to be made more comfortable so I could
sleep. However, before I even got the new room/bed, the same
consultant came and told me that I could go and that 'the pain team
weren't seeing me'. I could see the bed manager,
ward manager and nursing staff looking at each other. I felt literally guttered and shattered having spent all night in A&E
for a second time within 2 weeks, but nobody had thought to examine me
any further to explore the cause of my severe pain. I went home
feeling exhausted, fatigued and very angry, plus I had no carer help
as her carer was ill, so I had to do tasks which were quite literally
beyond me (hair washing) and paid the price the next day. I then wrote a letter of complaint aimed at the medical consultant and
pain team. It should be noted that I have a pain consultant at
King's College Hospital, but the Whittington were fully aware of this and could
have contacted Dr Sue Peat for emergency plans, as needed, if Isobel was
admitted.
On Friday 17th January, Isobel
saw her physiotherapist who was able to diagnose her with 'Sterno-Costro-Condritis' (severe sternum pain and inflamation where all the ribs meet into the sternum, as they are joints in themselves).
For me, this was all bitter-sweet. There was an initial feeling of
anger that the hospital had seen me twice lately, including an
admission for pain in early December, and not worked out the problem.
Yet again I had to pay to see a private expert where the NHS
have failed to make a diagnosis. This not be any means the first time. I
think that when A&E had cleared me of any heart trouble, they had
simply stopped looking. We all know how stretched A&E is, but I had been promised admisson for pain twice, and twice been left for 24
hours before being discharged. I was incredibly relieved to have a
diagnosis of her problem and was taped to off-load my chest and to try
to activate the rhomboids and other muscles from behind. This gave me a 25%
improvement, but unfortunately I was allergic to the tape and
because of my EDS, and skin fragility, the tape had to be removed.
Nevertheless it was enough to ensure a diagnosis. I was told that a
dexa scan would give confirmation (I have osteopenia in my right
hip, and because of my ongoing HRT/early menopause) it might be worth me having a dexa of the hips,spine and sternum to get a complete
picture, since my last scans were in 2018.
Very
usefully, I am seeing Dr Peat, my pain consultant on Tuesday 21st
January, as an emergency. It is possible that a steroid injection might
be able to help with this pain. Dr Peat might
have some ideas of her own, or be able to advise further about my
opioid usage as it is becoming too highfor safety -
especially as I live alone. This was why I had sought inpatient
admission to help.
From a physiotherapy
point of view we need to strengthen the muscles such as rhomboids to off-load the chest. I might also see my former osteopath as
are often better than physios at bone articulation. - especially in the
ribs and thoracic spine. This might help.
I am seeing my GP again tomorrow, and my physio is sending an email which I will then send on to my GP, Rob, Mr Garnham, the Pals team at the Whittington and to Dr Peat.
It is not thought tha the surgery is particularly relevant to this episode - factor, but not a cause. Mr Garnham had mentioned costochondritis - but that is just odd ribs whereas this is for the whole sternum and has made me more and more round-shouldered and pigeon -chested in order to offload the pressure and pain in my chest. It is also yet another diagnosis and more work to correct.
Saturday, 11 January 2020
7 weeks postop Right side, 17 weeks postop Left side - Appointment with Surgeon update on 8th January 2020
On Wednesday 8th January 2020, despite terrible fatigue I made my way to Wolverhampton to catch up with my surgeon Mr Garnham. I had fortunately been squeezed into this clinic and was only given the appointment on Monday 6th January, so it gave me little time to sort out trains. I made 7th a 'rest day', but was truly fatigued. However, this trip to Wolverhampton was the furthest I had made since discharge from hospital back at the end of November. Just walking to my local tube and going to Euston seemed an effort before the long train journey ahead.
Luckily there seemed to be no other patients around when I arrived in hospital, so I was seen more or less straight away. I explained the events of the week before to Mr Garnham, and the fact that the radiating arm, little and ring finger pain had returned to the left arm, whilst the right arm (most recently operated on), was fine. He palpated my chest and said that my pec minor was 'as tight as violin string'. He said that I must rest this arm, although he didn't want it for too long in a sling. He said that initially to rest it, but that the next step would be to try botox in the muscle. I explained that unfortunately I couldn't afford to do this in Bristol. Mr G said that there was a radiologist who might be able to do it in Wolverhampton, but that they had't really got someone up to speed here - but they were attempting to send them on training. He said that if botox failed to help that we might be looking at surgery further down the line to remove my pec minor on the left side. He requested that I had a chest x-ray that day, which I had to go to A&E for as I was too late for their normal radiology department as this closed at 5pm. Thankfully I had enough to get this x-ray done before then waiting for my return train home. Mr G said to ring his secretary on Monday, and that he wanted to see me again in 8 weeks time. He didn't help much with explaining why my chest is so tight and full of pressure and weight on it.
This is my account of the appointment and the A&E event: https://www.youtube.com/watch?v=cA7VtoLgadc
I had tried to get the report of my A&E discharge summary as it had never reached me. Unfortunately it arrived the next day with a suspected diagnosis of 'Acute Coronary Syndrome' - ACS. This scared me a lot especially as my dad died of an MI aged 40. Some of treatments made sense - e.g. asprin, or blood thinning drugs as my blood is presently 'thick and clotty' with a high D-Dimer score still - apparently due to surgery. However the treatments that they outlined in the letter did not match what happened to me in the department, so I am having to verify with the doctor who signed the letter to make sure if it is not a mistake. If it isn't then surely I need a follow-up appointment with a cardiologist. In addition, I've seen abnormal ECG notes in my medical notes - I happened to have access to them and took a picture - something about an' anterior infarct' was mentioned on 4-12-19. If so, then this will surely need investigating. I am waiting for clarfication from the hospital. If I possibly have ACS then I will need to inform Mr Garnham asap. Otherwise my life remains continued in pain and fatigue and now I am not allowed to play my recorder either! Let's see if rest helps. Typing on the left hand (last 2 fingers) is not feeling quite right either. I am really wondering how great an idea all this surgery was. In his last email, Rob said it was quite probably because of my EDS if there is failure. Surprise, surprise.
Luckily there seemed to be no other patients around when I arrived in hospital, so I was seen more or less straight away. I explained the events of the week before to Mr Garnham, and the fact that the radiating arm, little and ring finger pain had returned to the left arm, whilst the right arm (most recently operated on), was fine. He palpated my chest and said that my pec minor was 'as tight as violin string'. He said that I must rest this arm, although he didn't want it for too long in a sling. He said that initially to rest it, but that the next step would be to try botox in the muscle. I explained that unfortunately I couldn't afford to do this in Bristol. Mr G said that there was a radiologist who might be able to do it in Wolverhampton, but that they had't really got someone up to speed here - but they were attempting to send them on training. He said that if botox failed to help that we might be looking at surgery further down the line to remove my pec minor on the left side. He requested that I had a chest x-ray that day, which I had to go to A&E for as I was too late for their normal radiology department as this closed at 5pm. Thankfully I had enough to get this x-ray done before then waiting for my return train home. Mr G said to ring his secretary on Monday, and that he wanted to see me again in 8 weeks time. He didn't help much with explaining why my chest is so tight and full of pressure and weight on it.
This is my account of the appointment and the A&E event: https://www.youtube.com/watch?v=cA7VtoLgadc
I had tried to get the report of my A&E discharge summary as it had never reached me. Unfortunately it arrived the next day with a suspected diagnosis of 'Acute Coronary Syndrome' - ACS. This scared me a lot especially as my dad died of an MI aged 40. Some of treatments made sense - e.g. asprin, or blood thinning drugs as my blood is presently 'thick and clotty' with a high D-Dimer score still - apparently due to surgery. However the treatments that they outlined in the letter did not match what happened to me in the department, so I am having to verify with the doctor who signed the letter to make sure if it is not a mistake. If it isn't then surely I need a follow-up appointment with a cardiologist. In addition, I've seen abnormal ECG notes in my medical notes - I happened to have access to them and took a picture - something about an' anterior infarct' was mentioned on 4-12-19. If so, then this will surely need investigating. I am waiting for clarfication from the hospital. If I possibly have ACS then I will need to inform Mr Garnham asap. Otherwise my life remains continued in pain and fatigue and now I am not allowed to play my recorder either! Let's see if rest helps. Typing on the left hand (last 2 fingers) is not feeling quite right either. I am really wondering how great an idea all this surgery was. In his last email, Rob said it was quite probably because of my EDS if there is failure. Surprise, surprise.
Wednesday, 1 January 2020
Reinjury - 29 December 2019
I had cried hard on the morning of the 29th December, mourning the loss of my cat who died on 27th. That probably didn't help my ribs. I did my spirometer exercises as usual, and then felt I should do something physical. I didn't fancy walking or going to the shops, but felt that a spell of gardening might just make me feel like I was doing something positive. I have a few Angel statues (small) and ornaments left in my garden by it's previous owner. I wanted to clear the area of dead leaves and weeds and along the whole back border of the garden (about 3 metres). It took me about 20 minutes, and I left feeling pleased and certainly the area looked better.
I then went back into the flat and was on the computer booking my Feldenkrais course for 2-9th May 2020 on 'Taking a breath' (most appropriate) and had booked my place, a train ticket and tried to reserve the B&B. Suddenly, and without any warning, I experienced the most searing chest pain. It felt like I had been kicked by a horse. I had pain radiating up my right side of face and head and to my back and also a bit later on, down my left arm. I felt nauseous. I dialled 999 as I knew NHS111 would have done that anyway. Although my inital obs and ECG were normal, the ambulance crew felt that I had been through sh*t storm of some kind and were unhappy to leave me at home. I bought my hospital bag and we went to A&E where fairly quickly I had obs, another ECG and bloods taken. It was then some while before I was given a chest x-ray and seen by a nurse and then the most grumpy doctor ever. I was finally given more oramorph and shortly transferred from a trolley on to a hospital bed and was told at this point I was going to be admitted, but that there would be likely a long wait for a bed. Not long after that I was taken to Clinical Decisions Unit where I spent the whole night awake thanks to an elderly lady who talked all night about a load of gibberish. There was a lady next to me who had abdominal pain, but was given painkillers and my doctor decided not to give me any oramorph, even though I have it at home, apparently he was 'uncomfortable' with this. Not as much as I was. Fortunately I had access to my own medicines (other than paracetamol and oramorph) so took my night meds, and what I could.
In the morning, I had breakfast at just after 8am, but it was not until 11.30am that I was seen by another ED doctor who decided it wouldn't really be advantageous to admit me since I had access to oramorph at home anyway, and that my chest x-ray and bloods were normal. He thought it was possible I had costrochondritis (inflammation of my ribs) because I explained that now the left, rather than the right side felt worse, and that there was a clicking sensation. I had also subluxed my lower left rib earlier on the toilet! The ED doctor agreed I could increase my oramorph and would let my GP know. He also said he would raise the suggestion of me having a hospital bed to help with my back pain. I left the hospital shortly after 12pm, and left for home to have a much needed bath and tried to keep up as long as I could before crashing and having 11 hours of sleep. I also needed 2 hours of a power nap on New Year's Eve, but had no plans to go out.
Here is my account of the event: https://www.youtube.com/watch?v=_jScrIoSJ8s
It is now 1st January 2020. I am still feeling very tight in the chest, but it is going to take time to recover from this incident. Indeed my physio text me to say, 'rest, rest, rest'. I am not yet ready to resume rotator cuff exercises. It is obviously going to take me some months to recover from this whole episode, and I really need to see my surgeon for review.
I then went back into the flat and was on the computer booking my Feldenkrais course for 2-9th May 2020 on 'Taking a breath' (most appropriate) and had booked my place, a train ticket and tried to reserve the B&B. Suddenly, and without any warning, I experienced the most searing chest pain. It felt like I had been kicked by a horse. I had pain radiating up my right side of face and head and to my back and also a bit later on, down my left arm. I felt nauseous. I dialled 999 as I knew NHS111 would have done that anyway. Although my inital obs and ECG were normal, the ambulance crew felt that I had been through sh*t storm of some kind and were unhappy to leave me at home. I bought my hospital bag and we went to A&E where fairly quickly I had obs, another ECG and bloods taken. It was then some while before I was given a chest x-ray and seen by a nurse and then the most grumpy doctor ever. I was finally given more oramorph and shortly transferred from a trolley on to a hospital bed and was told at this point I was going to be admitted, but that there would be likely a long wait for a bed. Not long after that I was taken to Clinical Decisions Unit where I spent the whole night awake thanks to an elderly lady who talked all night about a load of gibberish. There was a lady next to me who had abdominal pain, but was given painkillers and my doctor decided not to give me any oramorph, even though I have it at home, apparently he was 'uncomfortable' with this. Not as much as I was. Fortunately I had access to my own medicines (other than paracetamol and oramorph) so took my night meds, and what I could.
In the morning, I had breakfast at just after 8am, but it was not until 11.30am that I was seen by another ED doctor who decided it wouldn't really be advantageous to admit me since I had access to oramorph at home anyway, and that my chest x-ray and bloods were normal. He thought it was possible I had costrochondritis (inflammation of my ribs) because I explained that now the left, rather than the right side felt worse, and that there was a clicking sensation. I had also subluxed my lower left rib earlier on the toilet! The ED doctor agreed I could increase my oramorph and would let my GP know. He also said he would raise the suggestion of me having a hospital bed to help with my back pain. I left the hospital shortly after 12pm, and left for home to have a much needed bath and tried to keep up as long as I could before crashing and having 11 hours of sleep. I also needed 2 hours of a power nap on New Year's Eve, but had no plans to go out.
Here is my account of the event: https://www.youtube.com/watch?v=_jScrIoSJ8s
It is now 1st January 2020. I am still feeling very tight in the chest, but it is going to take time to recover from this incident. Indeed my physio text me to say, 'rest, rest, rest'. I am not yet ready to resume rotator cuff exercises. It is obviously going to take me some months to recover from this whole episode, and I really need to see my surgeon for review.
Saturday, 28 December 2019
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.
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:
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.
Saturday, 21 December 2019
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.
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:
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.
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.
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