Ongoing Left arm pain and sternal pain - April 2020

Quite a lot has happened since my last posting in that we are now in the midst of a pandemic of the Coronavirus meaning that hospitals full attention is on saving Covid-19 victims and all non-elective surgeries and out-patients appointments have been cancelled.

I was hanging out for an appointment with my surgeon/consultant, Mr Garnham in Wolverhampton on 18th March 2020, where he was going to admit me and run some tests, including radiological and get some help with managing my pain. I was informed of this the week before and was 'delighted' that I was going to get some help, but unfortunately it was cancelled the evening before and on the day itself I tried to bargain with the staff but was told that people were literally 'dying' in the hospital and it just wasn't safe to attend. Mr Garnham phoned me that evening and he'd requested a load of specialist rheumatological blood tests (ANA and ANCA) that looked for things like Rheumatoid arthritis and Lupus and other such conditions. All these came back normal, including a load that my GP had requested, so whatever goes on with me, never ever shows up in my blood, so they are goingto have to look outside the box. In addition, my sternum MRI scan came back normal so it hadn't been perhaps the best test to prove what is causing my chest pain. The most likely diagnosis is Costro-chondritis and inflammation of the ribs as they join into the sternum. However I have now had this since Christmas and rest has not abaited the symptoms. I additionally cannot elevate my left arm, although my right arm remains OK for range of movement and my pec minor remains very tight to the left and was also tight to the right when my osteopath (who I hadn't seen for ages) determined when he saw me the next day. A letter back from Mr Garnham requested my GP to arrange for pain relieving injections by a rheumatologist which was refused because of Covid, and for me to continue to work through elevating the left arm. I still can't play the recorder and hair-washing and drying is agony when I had to do it for a few days whilst my carer was off sick.

I now suspect that I have adhesions as well as ongoing pec minor syndrome. My circulation is also not great on the left and I have severe  neurological pain again on the left arm after attempting any exercises which causes me great pain. I feel I am now worse than I was before surgery on the left and I also experience some severe muscle spasm of the left scalenes which I have written about before. I think I might end up having to have repeat surgery on the left because the left side musculature looks completely differently in my neck in the left to the right - even if the right arm is elevated the right side looks OK, but the left looks under great strain. I tried to show this using black eye pencil on the affected muscles. I can literally only get my arm into the ''Roos Position' (see earlier entries).

I have emailed Mr Garnham again and just asked if I could be requested for an admission review as soon as Covid-19 is over and it is safe to do so again. I am aware this could still be some way off yet.

Here are some pictures of me at the moment - shown above.

Six months post-op (left) and 3 months postop (right) for Thoracic Outlet Syndrome

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

The above video diary explains where I am now at - six months post-op left, and 3 months post-op, right.

Unfortunately things are not good. I have had severe sternum and rib pain now for three months and yesterday had an MRI scan of my sternum, the results of which will take 5-10 days to arrive. At the same time I also had a repeat kidney function test, that my pain consultant had requested.

I have severe pec minor and left arm pain, although the right arm is slightly affected. I strongly suspect that pending trying botox first, that if that doesn't help that I might need pec minor surgery. I can hardly raise my left arm above my head which is a significant deterioation since my surgery when I could easily and effortlessly elevate my arm. I have become increasingly kyphotic since the pain in my sternum begun, and despite the one physio exercise I have to active my rhomboids it is not really making much of a difference. I am also wearing a rucksack-like contraption to open out my shoulders since I am too allergic to tape. I am now also getting more headaches, and have at times had some near black-outs with low blood pressure and definite Postural orthostatic Tachycardia syndrome. I've honestly only just made it in time to bed on some occasions.

Last week I had facet joint injections for my spine, but unfortunately these have had no benefit to my back pain which is a real disappointment. I am due to see my new spinal consultant in April.

More importantly, I am due to see Mr Garnham on 18th March, and hopefully I will have my MRI results by then. Something urgently needs to be done because I am declining at such a rate. I have also lost my voice for a few days - so perhaps I have had a virus, laryngitis at the least.

I am not sure what my prognosis now looks like, but at the moment I am worse than I was before my first surgery, although my right arm thankfully remains OK. So far I am not sure how much I have benefited from surgery, although in the early days post-left (first op) I was doing well until the second. I certainly look much iller now in video diaries compared to six months ago. I hope there is a positive way forward and much needed help very soon. 

Update on my situation with Stero-costro-condritis and post Thoracic Outlet Syndrome

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.

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.

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.

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. 

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.

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.