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.
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