More on Omohyoid on myself and anatomy of Thoracic Outlet Syndrome

 Here is a diagram showing Thoracic Outlet Syndrome. 

I have had my scalenes and part of my first rib removed, but now my pec minor needs resecting and my omohyoid. 

Look at where the pain is affected with TOS. Scalnes and pec are shown here but not Omohyoid.  I struggled to find a diagram with all of them. 

Here, the vertical line shows the Omohyoid muscle and the horizontal line is the scar from my scalenectomy from 2019 showing where they were removed. Look how close togther the Omohyoid is and how it is affecting my brachial plexus. It is too hard to show how tight that muscle is, but you can see it with the naked eye.

My Omohyoid is unmarked below - you might just be able to see it if you look carefully.

Seeing Mr Garnham and Problems with Omohyoid and Pec Minor

I saw Mr Garnham, having had the day from hell with train problems. Mr Garnham says I need Botox in pec minor and my "Omohyoid" muscles which is extraordinarily present and extremely tight. I can't have Botox at Wolverhampton, and Mr Garnham will see what he can sort for me in London, but I'd like to know how much this would cost privately in Bristol, if absolutely essential. The need for the Botox is to see if it relieves my pain and symptoms for pec minor and Omohyoid, without destabilize my shoulder joint, bearing in mind I have EDS. I must say the Omohyoid was all new and might be causing me swallowing and possibly my new vocal problems. I also need to be reviewed by Respiratory (happening next month). If the Botox works, I'll have surgery to resect my Omohyoid muscles and pec minor and I've been put on Mr Garnham's waiting list, as all this might take some time to sort, whether by the NHS if we can get it, or privately if I must. I'd be interested in your responses. Look up Omohyoid!!!

This image shows where my scalene muscles were located, and my subclavian artery, that was 100% occluded bilaterally. It also shows where the pec minor muscles are that would need resecting if the boxtox trial is successful. 

The image below shows the location of the Omohyoid in detail.
 

 

This diagram shows the Omohyoid again with the Scalenes. I no longer have my scalenes as they were removed in 2019 (September, left side, November 2019, right side). Note how everything is so closely related. 

 

Update of appointment with expert Rob in Bristol

 On Wednesday 4th May I made the long trip to Bristol to see Rob at The Cherrington Practice, where I had gone exactly three years ago to get an official diagnosis of TOS in May 2019. It felt strange to go back there, but it was very necessary given how things have been for me since my surgeries in 2019. 

The first obstacle was just getting through the day. Three years ago this was something that was hard, but manageable. This time, I couldn't even get up until 09.30 and was extremely fatigued before the taxi took me to Paddington. I didn't know where I was, and it took me a while to find the main Paddington Concourse and disability support. I used the bathroom and bought food for the day from Pret, and a kind Disability assistant took me on a buggy and drove me to put me on the coach on my train. The train left bang on time and I had arranged for a taxi to meet me at Bristol to take me to Rob. I found the taxi OK and was glad that I had sorted this all out in advance. 

I met the lovely Ally who is Rob's receptionist and it wasn't very long before Rob called me in for my appointment. I updated him on my lower body situation which was three disc prolapses and nerve impingement at L5 on the left side. At the moment I am in a difficult situation in that I was going to be having a mini-disectomy and now it looks like I am having nerve blocks for my back pain and sciatica. 

We talked about my upper body. I explained that I had severe pain on my chest as if an elephant had it's foot on the upper part of my chest. This was causing difficulties with inspitation and now difficulties with my voice due to silent acid reflux, and that I am waiting for an endoscopy. I also need my ears syringed, according to a recent ENT appointment. At my recent respiratory apppointment I explained how their physios have decided to quit with me and that there are definite problems in inspiration which Rob had read from letters I sent to him in advance. 

We talked about my pain patterns in my left and right arms and how they felt and what hurt - e.g. putting on a sweater, pegging out clothes, washing and styling my hair - all things I can't do, or lifting my arms above 90 degrees. 

Rob carried out a very detailed and comprehensive examination of me, looking at every single finger and doing strength and neurological testing everywhere. It seems that my right middle finger has lost it's nerve and I couldn't respond to pulling or pushing against the tip of the middle finger. Rob put that down to my EDS. 

Rob couldn't do any of the standard TOS tests that he attempted three years ago. There was simply no point because he knew I wouldn't manage any of them. 

I was lying down on the couch for part of the exmaination that involved assessing my breathing and neurological pain patterns and brachial compression on both sides. When Rob fed back to the end he said that there was a lot more fog than clarity about my case and that the EDS was making things very murky. I also had to do some hand grip strength tests on the right side it was 28 on holding a metal item to squeeze as hard as I could. On the left side I only managed 12. This was a significant deterioation from thre years ago - on the left, although the right was about the same. 

Rob agreed that I still have Neurological TOS - NTOS  and that there remains compression of the scalene area and severe tightness of the pec minor. I reminded him that Mr Garnham had put some lidocaine into my pec minor with an ultrasound and by an an anaesthetist and that it had given me short term relief until I got back home. Rob is now going to have a serious discussion with Mr Garnham about doing repeat surgery on my left-hand side in terms of a redo of the scalenectomy and to look for any changes, adhesions and scar tissue, and possibly to look at my pec minor, although I feel that cutting any of this will be risky. Rob said that even redoing the left side will be an extremely difficult situation for Mr Garnham and made all the more riskier by my EDS. He said it could make me even worse. In the meantime he certainly agreed that I was on the 'severely affected' end of the spectrum, and that he would make this clear in his report for the DWP and also for A&E doctors so that they could understand how badly affected I am by this neuro compression. 

Apparently my breathing was 'extraordinary'. Rob simply couldn't work out how I was breathing, and he said that 'no wonder respiratory were struggling with me'. I am not sure whether he has plans for me to do more physiotherapy, but agreed that the respiratory matter needed dealing with. I explained how my local hospital were very keen to receive his report, and my pain consultant too. 

I left at 16.45 and took a taxi back to Bristol Temple Meads and the train guard allowed me to take a train half an hour earlier than I was meant to be on and I talked to my mum. I felt exhausted and although I was really glad I had come for the appointment, the picture of recovery looks limited. and at best unclear. It is now up to Mr Garnham as to whether he'd risk repeat surgery on my left side. I have agreed in principle to let him try. I don't see Mr Garnham until 25-5-22. 

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I was utterly exhausted when I got in and was asleep by 9pm. The following day I was in agony all over my body as I had done more in one day than in 3 months. By Friday I thought I was improving, but then was bad again on Saturday and yesterday. I am bad again today, in severe lumbar pain, radiating left leg pain and also extreme upper body pain. I had very little sleep and I am feeling very brain-fogged and exhausted today, but felt I must get this update up as quickly as possible. There is still a lot to reflect on. I look forward to reading Rob's report when it arrives. 

ENT Appointment

Today I went to see an ENT consultant. I had a list for all three aspects of Ear Nose and Throat, but my GP had only mentioned my voice problems, although the ENT consultant, a gruff-manored man who confirmed my ears were full of wax and would need laser treatment, but that I'd need to be referred back to him for that specifically, and that I'd need to use olive oil to soften the wax in advance. My nose showed as 'broken' on an MRI and he used the 'blocked' nasal cavity to insert the tube to examine my throat after first spraying a numbing agent up my nose, which tasted incredibly bitter. My throat showed no vocal cord abnormalities, but apparently there was acid reflux, which surprised me as I don't eat late, and don't have indigestion or heart-burn. The specialist said I would need an examination of my oesophogus and upper GI tract to explore that further. He also said that I would need specialist speech therapy. He didn't offer any other help or advice. We discussed that all of the throat area is full of connective tissue and because of my EDS might be impacting on my voice. No great surprises there. I am really saddened because my voice used to be as clear as as bell. It is horrible sounding like I have laryngitis all the time. He asked if I talked a lot. I said that I didn't. No real answers. I can't see how speech therapy will help with a very hoarse voice, when I am not talking a lot, but I suppose I will have to see and try it. 

On Monday, my respiratory physiotherapist gave up on me and said that she could offer no more help with the fact I can't fully blow into my spirometer or move the blue ball, which is the heaviest. I feel that doors are closing on me. I have a respiratory consultant appointment on 21-4-22, and then the TOS expert physio in Bristol on 5-5-22 and my TOS consultant on 25-5-22. I don't seem to be getting a lot of joy from anywhere.

Big 2022 Update and ENT Symptoms

 On 13th April I am going to see an ENT surgeon. I have had voice hoarseness for over a year now, I constantly hear my own heartrate pulsing in my ears. In addition, my ears are regularly blocked up and have been syringed many times. My nose is apparently broken, from a childhood incidents. But the main problem is the voice. My throat is sore and my voice, which used to be as clear as a bell is husky and broken at many sound levels. I also have a vallicular cyst that was reported on a thoracic MRI Scan.This is nothing whatsoever to do with TOS - but it is the only place I can park this posting, as I don't want yet another blog. 

Here is a picture, although not a very good one, of the back of my throat. I have no idea what will be found, but I do need this problem to be resolved as soon as possible. I will update this blog again after the appointment. At least my nose was clean! 

TOS Update

Things have been bad for a long-time. I have constant chest pain all around my collar bones, side of neck, jaw, and into my chest up until where just before breast tissue begins. It feels like there is an elephant's foot stamped onto my chest, constantly, and inhalation is limited, proven by respiratory tests in hospital. I am failing badly on my 'Incentive Inspirometer' and have a check-up tomorrow (2 weeks delayed) with the respiratory physiotherapist, where I will be telling her that things have not improved whatsoever, and if anything, have become worse. My SATS remain good, but it doesn't feel like that to me - it feels like there is not enough air in my lungs, or perhaps they are just too full of air that cannot escape. The problem, apprently is with inhalation, not exhalation. 

I have radiating left arm pain from the neck all the way down the back of the left arm into the ulnal nerve root, with pins and needles and eventually numbness in the left hand. The right hand is symptomatic on action and if elevation is attempted. This is why tasks like cleaning windows, changing my bed, reaching for things in high cupboards, washing and drying my hair are impossible tasks. Typing is starting to be a problem for some fingers - the middle ones of my right-hand - possible overuse. 

My hands are permanently cold, and I think I would fail both the Roos Test and 3 Minute test, based on the fact I can't do them. Pre-surgery, I had no chest pain. Now I do. 

I am seeing the lovely Rob, expert TOS Physio in Bristol on 4-5-22 - almost 3 years since I saw him last. I will be discussing redo surgery on the left-side only. 

I had some injections into my shoulders in December 2021 by Ultrasound at hospital here in London. Nothing was found in terms of trauma or damage to the tendons. The injection might have improved things a bit on the right, but the left has continued to be painful, with minor relief only. I would definitely be open to repeat surgery, but my blasted EDS makes this risky. However, we also know that I have incredibly tight Pec Minor, although it would be too dangerous to consider removing these, because I'd get even less stability in the chest area. 

At the end of May - 25-5-22, I go back to Mr G in Wolverhampton. We are hoping Rob will have done his report by then. 

I have also heard from Neurosugery. Apparently, despite my recent sciatica flare-up requiring hospital management, they are reverting to nerve block injections (which I've had before) from a discectomy, which sounded far more suitable, although it is surgery, and therefore risky. I don't know which way to turn at the moment. I am constantly fatigued. Very brain-fogged. I am struggling to write. I am hating writing my books. I used to enjoy writing - this sort of thing is OK - but anything more technical is a real challenge. 

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.

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.

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.

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.

Days 8 to 9 following my second side surgery for Thoracic Outlet Syndrome

Firstly, here are some of my thoughts from day 8 - mainly about my struggle to mash some avacado and butter some toast (OK the butter was hard) - caused a lot of pain https://www.youtube.com/watch?v=o2saYwuFLn8&t=42s

I was still struggling to breathe a lot yesterday, but that has become a lot of easier today, but only if I remain at home. I went for a walk locally, not far at all with a cheesecake craving and could find nothing I really wanted at either Tescos or  Sainburys. Obviously everyone else has the same idea. Bought some of the pots puddings that had cheesecake and lemon, but I wanted an all white one with biscuit base. Nevermind.  I will try again tomorrow. As it is my birthday tomorrow I feel I deserve a treat!

I did manage to have a little go on my recorder, and it wasn't bad at all just for a first attempt. I might try again today.

I was a bit naughty and this morning decided to remove my remaining steristrips in the bath so that I could see how the wound looks - I knew the skin had closed enough to risk this, but obviously it is still very fragile at this stage underneath, so I need to be careful with any carrying.

The wound is looking very neat already at day 9 - there is still some bruising, and I am using lots of Arnica and started to use Bio Scar Oil today, as both products did a very good job of the first side scar. I also did some Bowen work on myself to faciliate the breathing difficulty and general pain and heaviness. Today is the first day I feel less emotionally fragile. 

Days 5-7 Post Op for second surgery for TOS

On the Wednesday afternoon which was the afternoon which was on day 5, I had a complete meltdown. I just started to cry and felt incredibly depressed. A sister came by to say that they might have to move me again back to the short-stay surgery ward. I just didn't want to move as it was more or less agreed with the Reg that I would aim for home on the Thursday (day 6). As it was they were again able to keep me where I was, particularly as they had no idea when I'd be moving, and I was incredibly distressed. Other patients relatives made very unhelpful comments that they had been through more, when they had no idea of my personal story. It was insensitve and invalidating. Maybe I should have seized the opportunity to leave this ward which I would never want to encounter again. There was just no comparison between the level of care I received after the first to the second surgery, although my surgical team were very supportive, we agreed that keeping me in another night was not going to benefit me anymore, so I psyched myself up for my long journey to London, ensuring I had disability support by Virgin trains (really excellent), in place for day 6, post op.

In the end this was the best thing I coul have done. Although the day was long, I had also booked my carer to help with shopping, hair washing and to prepare me a meal so I could then rest at home. It was so good to be back at home. I had needed an extra night in hospital for the second side, and was so glad that my experience of the first side was as good as it was otherewise I am not sure I would have put myself through this again although it clearly needed doing. I therefore recommend again that a patient going through TOS surgery is not alone and has the support of family and/or close friends and does not travel on public transport either, unless they have support lined up. I took a taxi home from London Euston.

Here are my thoughts of day 6:https://www.youtube.com/watch?v=rp73TZ5MAAk 

Today is day 7 post-op. I slept well at home, and was so glad to see me cat, and have the support of my carer yesterday. Today I have done my spirometer exercises several times. Breathing is still difficult and I feel very tight. I have removed my dressing today, and it looks pretty similar to the other day (day 5) so here I am again. I am now using lots of Arnica as it really does help with bruising and am using scar oil on the area that doesn't still have steristrips attached to it. I mustn't pull those off!!!

I am still feeling somewhat emotional. It is hard doing this living alone, but would be too hard to travel far at this stage, and my family are not local. Rest and just watching TV are all I want to do. I feel that there is no doubt my second surgery has been a much harder experience than the first, and I do blame the ward environment for part of this, along with short-staffing and big delays in getting my medication. Now I am home I can obviously self-medicate in my own and usual way. I am so glad to be home. At least from heronin I have an idea of what to expect.

Ongoing recovery from my second surgery for TOS

On Sunday (day 3) post-op of my second surgery, I signed a form that was implemented by pharmacy on day 4 on the Monday, which meant I could take responsibility for taking some of my own drugs that fell out of the hospital's usual drug times and meant  I could take control for getting these medications on time and to relieve the pressure on the staff. This worked very well, and I just let them know I had taken them. I had no idea that this was a possibility.

On day 4 I had a chest x-ray following my need for use of the nebuliser (see previous post). The x-ray was completely normal. Here are my thoughts at day 4 https://www.youtube.com/watch?v=-gjGjl2zX74

This was how my wound looked at day 5 post op. It was covered up again and I was instructed to take off the white pads on day 7 which I did, taking care to avoid removing the steristrips which were still keeping the wound together. The wound is a bit bigger than it was with side 1 and there was more blood and bruising than for side 1.

Here are my thoughts at day 5 https://www.youtube.com/watch?v=4-YZSW8svS8  I am still having trouble with breathing. I have been encouraged to do my breathing exercise as per post-op first surgery, using my spirometer with balls. I was also advised to sit up more than I was doing and have the bed more upright. This helped a bit.

Next few days following my second and right-sided TOS surgery

As I said, I was not very happy on the ward I ended up on after my second surgery. It was under-staffed and my wait for drugs was often long.

In the afternoon of day 2 they shocked me by wanting to move me back to the 'short stay surgical ward, but I was very upset by this and fortunately had a visitor (a lady called Amanda, who I had met on the UK TOS support group) who spoke to the Sister in charge and the decision to me was revoked at least for the rest of the weekend. I was very unsettled and upset. Remember that I came alone to hospital and didn't have any immediate friends or relatives. I do not recommend this for future patients who attend for this surgery, whether it is for the first or second side.

I had some difficulty in breathing and over days 3 -5 had some nebuliser support, although my oxygen SATS were in fact 100%, I just felt so tight in breathing. Possibly the nebuliser support was psychological more than anything else, but neverthless it did help a bit.

One thing that I heard about between my first and second surgeries was a dressing gown from George ASDA that is suitable for post-surgery and holds drains and is only £12 - so I bought one, and indeed it was very helpful. One other difference between the first and second surgery was that I had the drain in for three days post op, as opposed to just one day after the first operation.

The next image is a bit gross but shows my drain in more detail:

I had a visit from Amanda again on day 3 post-op which was very supportive and kind of her. I cannot stress enough the need for support from friends and family after this surgery, or a friend.

Diary of my Second surgery for Thoracic Outlet Surgery and Recovery

I think that my feelings about going for my second surgery are already diarised, but here they are again: https://www.youtube.com/watch?v=yi1z916xibM

I travelled back to Wolverhampton on Thursday 21st November, where I attended for my Pre-op assessment and was then taken to a 'temporary ward' as I was travelling for London and needed to stay the night before my surgery, so I was taken to what they call 'Surgical Short-stay' and it was reasonable in there, if not basic. They didn't provide over-sheets, just blankets, so I asked for one. The food throughout my entire stay was reasonable and I had large type fish-fingers for my supper and two puddings! The staff were nice, and the next day I made sure that I showered early with the pink stuff which is designed to ensure there is no MRSA on my body. I was then given a gown and stockings. I was first on the list. Unfortunately I couldn't go to the toilet before theatre, but on the way down there, I suddenly developped an urgency and the theatre staff had to very kindly let me use the female theatre bathroom. I was so glad to do that.

Putting me to sleep was different to the first time as I had asked them to use less invasive gas mask, and having it just above my face to avoid suffocation, but then the anaesthetist went into how they were going to use different medications and a different approach to putting me to sleep which I just didn't want to know about at this stage, I just wanted to slowly drift off to sleep, which did actually happen, and I was a lot calmer having used the bathroom. I went into surgery and left recovery at about 2pm which was a bit of a shorter time I think (by about an hour) compared to the first surgery.

Highly unfortunately the ward I had hoped to end up on was full, so I ended up on a general surgery ward and this was nowhere near as nice as the experience I had after my first surgery. The ward was hugely understaffed and I had to wait 5 hours at one point just to get some more Oramorph. The staff were nice, but not as efficient and just spread too thinly. The atmosphere was also nowhere near as nice on this ward and I have made a decision to write to the hospital about the matters of staffing (I am fully aware of the shortage of nursing staff on the NHS) and the unacceptable wait for medications on numerous occasions.

I was, fortunately, generally comfortable on day 1 because I had a lot of local anaesthesia as per first surgery, but unfortunately my surgeon was unable to match the scarring from side 1 to 2, he tried, but I guess solving the problem is more important.

I was told I absolutely needed this surgery and that they had found a very similar situation in side 2 to the first side, if not possibly worse, although my symptoms had always been less on the second, or right side.

Here is what I say on day 1 post op https://www.youtube.com/watch?v=JqTEkA1hcJk

This is me on the ward on the afternoon of the surgery, needing a bit of extra oxygen which is perfectly normal.

Two Days before Surgery

https://www.youtube.com/watch?v=yi1z916xibM
It is my last day at home before leaving early tomorrow to travel to hospital for my second surgery for Thoracic Outlet Syndrome. Fortunately I think I have everything in hand - all clothing packed, medications sorted, letters and documents and tickets for travel all sorted. I must remember my dental splint in the morning and my mobile phone charger - other than that I think I am ready! I am quite fatigued today, so have had a nap and intend to have an early night as I will be up early tomorrow.

The next time I write up this blog will be retrospectively but with a lot of video diaries as before. I hope my next update will be that I have a bed and hopefully on the same ward as before.