And so we get to 2000 - when I wrote the major section of this endless document. A plane trip in early January went pretty well - no painkillers, no need to occupy the floor and economy seats both ways. But following that, I stiffened up a bit. I keep doing Aquamobility/Osteopathy/Hydrotherapy anyway. I had thought the title of this section obvious and self-explanatory, but there's now an explanation - just click on the title.
I continued in much the same way throughout 2000. Plane flights aren't so much of a problem, but I need the hydrotherapy and aquamobility (or two hydrotherapy sessions per week if the aquamobility class is not running). And I go to the osteopath's on a 2 weekly basis as a regular thing. I haven't had to use any painkillers much this year, so its a success from that point of view (and I just filled in a questionnaire to say so - there's hope for future patients of Dr Munglani!). Although the bikes have gone, I've just managed to do a walking holiday on Madeira, keeping the load of the top of the spine by carrying what I had to on a hip belt. Of course, I needed someone else to carry the heavy things - thanks, John.
2001 was much the same. Another walking holiday in May in the Cotswolds, again with John as official beast of burden. With the recession, I've been travelling less - but the effects of an international flight seem just as nasty: in June I went to San Jose and ended up with a displaced pelvis, inflamed right SI joint, displaced C1, T3 & T4. No pain at all, though - indeed, it wasn't until the osteopath told me why I was limping that I knew about the SI joint! Osteopath visits have been stretched to 3 weeks, which maybe isn't quite enough. In August, taking Dexter (parent's German Shepherd dog) for a walk became an event as I fell to the ground with a very sharp pain in my left knee. Not good timing as John and I were due to go walking on Cephalonia and Ithaca - lots of treatment from Laurie Woolfenden and an elastic bandage made it possible to do the trip, but the knee didn't seem to heal up as Laurie would have expected from a muscle or ligament problem. I kept having "bad knee moments" throughout the rest of the year.
So in early 2002, I again got referred to a specialist - this time a knee expert. He diagnosed (with the help of the extremely painful McMurray manoeuvre) a torn medial meniscus. It won't get better (unless I'm really lucky) since it has no blood supply and any repair happens solely through the sinovial fluid. Advice from the specialist? "If I could live with it, I would; if I couldn't, I'd have the operation" (knee arthroscopy). The WWW confirms that fiddling with the meniscus in someone my age leads to much greater chances of severe arthritis in later life. I'm trying to live with it... The best move so far has been to exchange my Lexus for an automatic Lexus - this has been an amazing help, not only with my knee, but also arms and shoulders. You don't realise how hard it is changing gear manually: I fancy its made me a somewhat less bad driver, too - I have more time to pay attention outside the car, rather than fiddling with things that the car can do itself.
And the other 2002 surprise? My right foot's arch has fallen. So its insolo mio now.
Holidays in 2002 were an away weekend in Kent, 11 days in Tuscany - climbing lots of towers - and a week in Exmoor, all with John.
Then... Well, things didn't go according to plan - life's like that sometimes. I'd just finished being Production Manager on The Haunting of Hill House for Bottisham Players, feeling a bit under-the-weather but struggling through. And then I came out in chickenpox - not a trivial disease for an adult. Two weeks quarantined at home away from my support system - no hydrotherapy, no osteopathy- weakened my back. I pushed a chair (I know better than to try actually lifting one - but surely pushing one on sliders across the carpet would be OK!) and did myself severe mischief. Masquerading first as a bit of lumbar pain - I even went back to work for three half days - it then appeared to be a massively swollen left SI joint, so swollen that it trapped the left sciatic nerve leading to my first experience of paraesthesia. That's feeling that is not really there - so not really there that ibuprofen and co-drydramol didn't affect the pain apparently coming from my left leg (though they were effective on the SI joint itself). You know those things you wouldn't wish on your worst enemy? This is one of those. Moving up to more powerful painkillers (diclofenac and diazepam as a muscle relaxant) plus an indispensible two channel TENS machine (much better than my own one) has helped somewhat, but life is painful and difficult. Recovery has been very slow - two physio visits a week for ultrasound and the glorious Bio-Freeze and an osteopathy visit, all relying on friends to drive me there and back laying on the back seat (thanks Dad, Brian, John-the-Gardener, JohnR and Emma). I can't do much even after two weeks, can only walk a few hundred yards after four, though at least I can drive the car - it would be impossible to drive a manual one. So its back to Dr Munglani, since there is no way I can ever, ever, ever stand doing this again.
"Nice to see you again" we both lied. The Chinese have it right - you should go see your doctor when you're well. As it was, he took one look at me and reached for a form before even starting the diagnostic chat. An immediate MRI scan (next day - not as nasty as the first one since I was only in the machine for 15 minutes) and an operation (diagnostic block - not frightening to contemplate) next week. He suspects that as well as the obvious lumbar and SI problems, there's a disc problem, too. And he prefers to call it "neuropathy" and offered more powerful painkillers (amitriptyline and gabapentin) to deal with it - but they'd scramble my brain and I'd only just got it back, so I refused! He wrote a nice description of the procedures:
Diagnostic facet joint blocks and SI joint blocks are used to test whether there is pain coming from the joints of the spine. They are performed with local anaesthetic and steroid. Normally there is increased pain for 2 or 3 days (but occasionally longer) followed by possible relief. Occasionally the aggravation in pain may go on for longer. The local anaesthetic and steroid used may cause headaches for a few days and temporary increase in weight. These facet joint blocks tend not to cause long term relief of symptoms but can be helpful to decide whether to go on to facet joint denervation, a procedure which may carry a better long term prognosis.
Sacral root blocks, dorsal root ganglion blocks and epidurals are performed to help reduce pain, particularly where there is a strong neuropathic element. Usually a mixture of local anaesthetic and steroid is injected though other agents may occaisionally be added. The steroids have been used for this type of procedure for decades though they have not been licensed for it. The chances of any major adverse effects after such procedures is in the order of 1 in 500,000. The risk of minor events such as significant headaches due to a spinal tap is in the order of 1% or less. Normally after such procedures there may be some odd feelings in the affected part followed by increase in pain for a day or two before hopefully some useful effect. Though these procedures do not tend to give long term relief, some patients do show quite dramatic responses. In some studies, use of such procedures reduces the subsequent requirement for any surgical operations on the spine.
Before the operation, Dr Munglani came to see me. "Hello, trouble," he said. "Do you have an abnormally high resistance to pain?" "Why - what do you want to do?" "Its more what you've got..."
MRI Lumbar Spine:
Between L2 and L5 there are minor non-compressive posterior disc
bulges. At L5/S1 there is a large focal left posterior disc protrusion
which extends about 2cm above the disc level where it contacts
the left L4 nerve root as it passes into the exit foramen. This
large fragment may be sequestrated.
You can see photographs of some of the MRI scan here - warning - large pictures! This is a "disc prolapse" (what might have been called a slipped disc) where the soft jelly core of the disc escapes into the spinal canal and crushes neighbouring nerves - that's why it seems to be in the leg: the left sciatic nerve is being damaged.
As expected, the operation was a success - apart from a bruise on my left hand where Dr Munglani failed to find a vein... But now I get referred to a neurosurgeon. He decides not to operate:
Her MRI scan shows a left sided disc prolapse at L5/S1 which has migrated rostrally behind the body of L5. However, her lumbar canal is capacious at this level. Because her sciatica has resolved following the nerve root block, I do not think that she requires discectomy although technically she would be a good candidate for this should her pain recur. Surgery at this stage will not influence the rate of recovery of her left L5 nerve root, nor is it likely to improve the natural history of her chronic low back pain. If her sciatica recurs I will be pleased to see her again with a view to surgery.
Its probably good that he didn't - it seems to be an operation which, although successful in itself, does take a long time to recuperate from (since they go in through the low back muscles). As I write this at the beginning of February 2003, I'm getting better gradually, but without such a major operation I've been able to work continually since the nerve block. I've just resumed the aquamobility sessions (I've not been since before chickenpox in October) and been reducing the physiotherapy and osteopathy back to normal levels (very necessary - I'm running out of BUPA funding again! - even though they won't pay for the osteopathy).
Once again the pool where I do hydrotherapy and aquamobility is under threat. Having already had the Bottisham hydro pool closed under me, I wrote to my MP. Details of the support campaign are on www.twsc.info
Now its July 2003: recovery continued very slowly, but surely. My left foot has stopped dragging and slapping on the floor as I walk, though it can still trip me up rarely. I'm back to most of a working life with odd setbacks as other bits of me give out, and the osteopath has finally reduced treatments from 2 weekly back to 3 weeks (whereupon I immediately had a "I can't sit upright" situation!) and has dealt with most of the complications (displaced ribs being the worst) from the rest of my spine taking up the load.
And now, in the blink of an eye, its December - and I can update this in Christmas holiday time :-). Further very, very minor improvement to my left foot - its almost but not quite normal - has been counterbalanced by a long drawn out problem in my right shoulder: its drooping below the normal level. Christina (my current cranial osteopath for those who haven't read every word of this epic tale) reckons that it is due to the cervical spine denervation - as well as killing the nerves which are signalling pain (the intended "good" result), nerves which control some of the muscles which keep my shoulder up have also given up the ghost. Those muscles have wasted away with the result that my shoulder droops. Looking back at some of my photographs, its clear that either I've found a lot of holes for my right foot over the years, or this has been going on for a while - the horizon line usually drops to the right.
This is a bad thing - not only does it mess up my photography, but the amount of droop of the shoulder is causing other problems. The shoulder is pulling my neck out of line - both vertebrae at the top of the neck and at the bottom are being twisted by it - and it is also pulling ribs at both ends of the rib cage out. And those ribs are putting strain on the lumbar spine.
Treating this has been extremely slow. Very little progress at all was made through the summer and early autumn, even though we went back to osteopath appontments every other week. A turning point has been reached: I've been able to increase the amount of hydrotherapy - now I go Monday, Wednesday and Friday thanks to a new timetable at the pool - and I've started having a back, neck and shoulders massage on the alternate weeks from osteopathy. Christina has also given me some exercises designed especially to increase the strength of those other muscles which can support the shoulder.
In the motif of the page - looks like I've started to run fast enough.
(July 2004) Or not. Running as fast as I can wasn't enough - the shoulder has been a continuous problem, though at least I ran fast enough to stop it getting worse. I've done more things to try to help - narrower keyboards at computers to reduce the amount of bending needed to use the mouse, Quill mouse at both work and home. I applied for and am in the process of receiving government support for the keyboard, mouse and specially fitted chair at work. The displacements in my spine have started to affect my left knee and right big toe also, so Christina is starting to think that I need to have orthotic supports to counteract this.
(April 2005) The chair at work makes a lot of difference: I can do things there (like read a book!!) which were impossible before. I've raised the time on the Break Reminder programme to 30 minutes (no sense going mad, but it feels a big change from 25 minute cycles). I've got used to the Quill mouse both at work and home (which took some doing!). Two hydrotherapies and an aquamobility every week, plus as much walking as will fit (as before). Osteopathy every two weeks - if I leave it any longer, there's too much to fix in one session. And extra massages ever alternate week, as before. Just maybe the shoulder and foot are a little bit better than last year, but the knee is a bit recalcitrant.
(August 2006) The Windmill Pool is closed due to the consolidation of four special needs schools into just two - with just two pools remaining. I decided it was going to be too hard to get to the pools from work and there'd be no chance of getting my three sessions a week anyway, so it was time to do something else. I started Pilates courses. This is very hard for me, but does seem to be somewhat successful - I've converted one of the bedrooms to be a Pilates room (mat on the floor, cushions, spikey massage balls, resistance band and lots of exercise instructions always available). The big problem is I have no core strength whatsoever - hypermobile hips etc means everything wobbles like jelly instead of being firm. A less serious problem is that the instructor treats me as if I'll break! (But she is good at trying to adjust exercises to work with my hypermobility.)
(Dec 2006) Squatted down to get lunch out of the cupboard. A proper squat, nothing wrong. Sprained something in lower right back. Its taking ages to get better, though the Pilates control exercises mean I can do things in spite of it. It turns out that the shoulder from 2004 which has been painful ever since was actually a frozen shoulder! Glad I didn't know that earlier - its nearly better now (again, I think the Pilates helped, though exercises like "The Cat" were really painful).
(April 2007) The denervation seems to be interfering with Pilates control of the upper torso. I found all Dr Munglani's write ups and emailed the instructor what had been denervated to see if she can think of ways round the lack of control. She was imaginative, but I still can't do some of the exercises.
(September 2007) A three day conference in August inflamed the right SI joint. This affected my posture, so the problem "spread" to right shoulder, entire lumbar spine and right foot. Back to painkillers to sleep (for the next six weeks at time of writing...). Still doing Pilates, still wobbling like jelly, but it certainly is helping: throughout this episode, I haven't lost a day of work. I even managed to take a holiday in Devon and be wardrobe assistant in a play!
Words (c) Sophie Wilson, 2000-2007. Back to my Home Page. Or go to my remedies page.
Explanation...
Alice comes across the Red Queen - an animated, life-size chess piece - who insists that they run, faster and faster. After a long period of exhausting running, Alice begins to complain: “Well, in our country,” said Alice, panting a little, “you’d generally get somewhere else - if you ran very fast for a long time, as we’ve been doing.” “A slow sort of country!” said the Queen. “Now here, you see, it takes all the running you can do, to keep in the same place.” The Red Queen continued, “If you want to get somewhere else you must run at least twice as fast as that!”.
Clearly I'm not running quite fast enough.