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.
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.
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.
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.
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.
