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.
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