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.