Begin at the beginning...
Actually, there were two beginnings. Here's the first one. In February 1994 I flew back from a business trip to California. It wasn't an easy flight - I must have had a slight cold or something - and when we landed, I went deaf (failure to equalise the pressure changes?). Happily I regained my hearing quite quickly, but I now noticed a continuous whistling tone (something like the noise a TV set makes). It might have been there before and I'd not noticed it, but it was quite upsetting. I went to my GP, who said she also had noises in her ears - bad moment: if your doctor has something which you have and she can't cure it... My GP referred me to a specialist, Dr Moffat, who confirmed that it was Tinnitus (ringing in the ears, but in Latin!) and that there really was nothing that could be done about it (his attitude seemed to be that lots of people got it and that was that). One leaflet and one very depressed person! That's the end of that beginning.
The real beginning, the really useful one, was in November 1994. Lisa said: "Sophie, you sit crooked." Well, so I did. We looked at me a bit. I stood crooked, too. Lisa had a friend, Hilary Painter, who did remedial physical massage, so I went to see her. My back and neck muscles were stiff and Hilary was only able to make a small improvement gradually, so I kept going for treatment. Many visits later, in March 1995, Hilary and I were chatting while she worked on my muscles and the conversation got round to Tinnitus... Hilary had seen an article about Cranial Osteopathy being somewhat effective for Tinnitus. We found a Cranial Osteopath, and off I went to the Marc Deora practise (then on Rustat Road, now on Hills Road, Cambridge - phone 01223 242828 and say Sophie sent you!). First Marc himself and then Kim Plaister and then Ginny Struthers and presently Christina Lenz treated me, using Cranial Osteopathy for my Tinnitus and also straightening me out a bit generally, at first reinforced by Hilary continuing her treatments. Yes, Cranial Osteopathy does work on Tinnitus - in particular, Kim could manipulate my head and tell me what she thought would have happened to my sounds - she could make it quieter and purer in tone and move the stereo position of it around. By visiting every 4-6 weeks, my Tinnitus was kept at a bearable level - 1995 was much happier than 1994! A side effect was that I could finally reverse a car - something that I'd never been able to do, since I could never turn round (I'd only been driving since 1990).
Enter the back...
In October 1995, I had my first obvious back problem. Lumbar muscle spasms meant I couldn't sit still (I watched telly either lying down or on my hands and knees!). Since I was seeing the osteopaths anyway, they treated me successfully for this. Work were quite kind (they would continue to be throughout the whole of what followed) and gave me a chair (used previously by another back pain sufferer) which helped a little. Life trundled on. The company BUPA administrator said I was unlikely to be able to claim for any of the treatment.
In 1996 and 1997, I got gradually worse. Transatlantic flights meant greatly increased Tinnitus and pain - in the lumbar region at first, then pains in the middle back and then the neck and shoulders. Work bought me a brand new osteopath recommended chair and footrest and I got very careful at how everything on my desk was placed. By the end of 1997 I was needing to see the osteopath very predictably after a flight in a set of sessions at 1-2 week intervals. In early 1998 all the three main pain sites would go at once and I started needing to take pain killers during or after a flight and pains began to occur in other places, worryingly down my arm into the little finger...
I went to see my GP in May 1998 to say I couldn't cope with it. She was very good about it and referred me to a BUPA rheumatologist in a BUPA hospital. I made a list of where I was prior to seeing the consultant (very useful - consultants are busy, so having an order to present my medical history was good) and sent many emails to friends and family at each point in time - a lot of what follows comes from them (quoted in italics if its a verbatim email - and doctor's reports are in bold). If I get the tense wrong in what follows, then it escaped the editting process which created this summary document (sorry!).
In July 1998, I went to see Dr Hazleman at the BUPA Cambridge Lea hospital. At the time, I wrote:
He was very concerned over my reported and tested lack of mobility, so he had neck, middle and lower back X Rays done and showed me the result - visible wear on the vertebrae, lower back vertebrae very much closer together than they should be. He wanted an MRI scan done as soon as possible - within the next two weeks - and then another meeting, now set for the 12th of August.
The basic explanation given was that I'm just worn out. Mechanically. This is unusually early - my X Rays are worse than his - but can happen. My mum needing a hip replacement before 60 is an indication that all is not right in our family.
The scary bit is that in an aside to his nurse he said something about Ankylosing Spondylitis.
I ran to the WWW and worried for the next two weeks, even though I reckoned that I hadn't got A-S. Then the MRI scan appointment came up, at Addenbrookes Hospital. The scanner unit was hidden on the campus and they were doing more building work, so I couldn't park particularly close and it was a maze through the corridors to get there (they need better maps!).
I spent around 50 minutes inside the machine, so don't get whatever it is I've got if you're remotely claustrophobic. It was very wearing being scanned - I had to stay still for 3, 4 and 5 minute scans (several of each, but only two 5 minute ones). The machine was unexpectedly quite noisy. When I got out of the machine I was stiff - which is only to be expected given my general problems - and dizzy. A premature Little Old Lady, I had to be helped off the table.
With that done, I was expecting a relief from worry and a good night's sleep. No chance of that! There's nothing concrete to worry about, so I spent most of the night finding things to worry about ("will BUPA really cough up for the MRI - it was about 1000 pounds?" "good grief, I was by far the youngest patient there - the next youngest must have been 65" "why did the receptionist act so funny at Mr Hazleman's name?"). I was tired, stiff and experiencing moderate tinnitus (its as loud as the air con at the moment).
I now had to wait until the 12th of August to see Mr Hazleman again, when he would pronounce on the MRI scans. Another mountain to climb, another BUPA claim form...
And so the second consultant visit eventually came. His report (in bold), with my italic text annotations reflecting the visit follows:
"I have now received your MRI scan result. This showed no intrinsic or extrinsic lesion. There were <too big> degenerative changes noted in the cervical spine from the 3rd to the 7th cervical vertebrae and posterior disc/osteophytic bars were noted in this region <your neck vertebrae are worn out and your body is growing new bone in the wrong places...>. Both C5, C6 and C7 neural foramina were narrowed, this was more marked on the right side<...and its pressing into your spinal chord>. In the lumbar spine the discs from the 2nd lumbar to 1st sacral appeared dehydrated<so you're stiff and immobile there>.There was a small disc bulge at the 3rd/4th lumbar vertebra in the midline, and just off the midline and more to the right, without any associated root compression. There was also a lateral disc bulge seen at the 4th/5th lumbar level which may be touching the left L4 nerve root <if you don't have numbness in your legs, you may soon>. The sacroiliac joints showed normal appearance."
And the email I wrote at the time:
Or, to put it another way, if I were 65, I'd be in reasonable shape. In Mr Hazleman's view there's plenty there to explain my disparate problems - tinnitus, numb fingers, neck/central/lumbar pain. He seemed a bit confused about the numb legs, assuming that I'd already got that symptom - oh joy, something to look forward to. The degeneration occurs in stages and plateaus out - I assume that I went through a step in early 1994 which gave tinnitus, one in 1996 and one this year - and maybe even improves (before the next drop). Maybe I won't get any worse for quite a time.
His written diagnosis is "spinal pain". He'd call it osteo-arthritis, but that seems to have been usurped for the rheumatoid-arthritis camp and isn't the right way to phrase things so as to trigger BUPA payments! Besides, its just my spine, rather than any of the other bones.
There doesn't seem anything I can do: no lifestyle changes, no diet changes etc have an effect on the wear (OK, I could make it worse) or bone growth (so I shouldn't eliminate all bone forming chemicals from my diet - my body would simply start moving existing bone around!).
They can operate on/in my spine to chisel away the growths that are pressing on the spinal chord - but my body will just regrow the bone again: maybe this would give about four years relief. The operation would take four hours, so its quite a difficult thing. He's going to reserve operations in the hope of dealing with this another way.
His preferred treatment of me at this stage is to continue the osteopathy and to send me to a pain anaesthetist. The pain anaesthetist can find out precisely where the pains are coming from and neutralise them (for example, using ultrasound to deaden the nerves for a while). Removing the pain should make my life easier and should also make me more mobile - some of the movement problems are down to me stopping moving when it starts hurting. He'll write the referral letter and would expect an appointment to come through in two weeks - but its a holiday season, so it may be a bit slower than that.
He's filled out the BUPA claim form. Bills so far are 73 pounds for XRays, 1000 pounds for the MRI scan plus unknown sums for the two consultant visits to Mr Hazleman. Since he's written osteopathy on the claim form (and the pain anaesthetist) I assume that some or all of the osteopath visits will be paid for by BUPA from now on... [To leap forward for a moment - no - BUPA want an osteopath to have worked for 10 years before they'll pay for treatments :-( ]
At this stage I was quite depressed and worried. The Spinal Pain was quite bad and rather disabling at times. Another transatlantic flight had me in tears during it, in spite of painkillers ("tears and painkillers in the dark"). I went on holiday to Portugal on the 18th of September 1998 for two weeks with Mike, and the short flights were much easier to deal with - but I couldn't carry a tiny rucksack for more than a few kilometres walk (Mike had to take it from me after that) and there were times I couldn't get my socks and walking shoes on (Mike did that, too). While walking downstairs to breakfast one morning, a casual swing of the arm locked up my entire back for a couple of days! I finally saw the pain anaesthetist on the 5th of October 1998, and the following is the email I sent after it:
''This is not really an ideal time for email, but I've just done the latest visit to the doctors and I might as well get it all down (and out of mind, hopefully ensuring a better sleep) now.
''The story so far: Dr Hazleman diagnoses I've worn my back out, early, and refers me to Dr Munglani, the Pain Anaesthetist. It is a good time to go, since I'm in pain...
''One examination later, I finally get things explained. I'd not understood what a Pain Anaesthetist would do from Dr Hazleman, but Dr Munglani gives a good explanation. I show all the signs described in his textbooks - where the pain is, the dull aches in the morning, the difficulty sitting, loss of curvature down the bottom of the spine, cold extremities (yes, that's all the same thing - the temperature maintainance is knocked out along with the referred pain: I didn't know that!) and - a whole new problem - a gathering set of weaknesses in some muscles...
''But its routine to him (apart from me being a lot younger than his average patient :-( ) and he has a 50% effective method of treatment. Using a local anaesthetic, he'll isolate the nerves from the areas which cause the pain - in the spinal joints and in the disc themselves, and then by using lasers he'll destroy those nerves forever... He will also send me on a course which he has designed for exercising correctly (touching toes is not the right thing to do at all!) which is at Bottisham(!). Walks are good too ( :-) ) but nothing which involves extension.
''So there we are. Exploration of my nerves starts at 3pm on the 28th of October, pump me full of anaesthetics then send me out to find if the right nerves are deadened. Repeat this until he is sure that he's got the right ones (don't know how long this will take) and then, under local anaesthetic kill them. I need to be driven to and from this meeting - any volunteers?
''Cause? Almost certainly inherited.
''Unhappy bunny. But happier for writing it out.''
It was a grim time. Although Dr Munglani has a great bedside manner, he does tend to rush through things (well, he has heard them all before) and so a lot of it sinks in well after you've left and can't ask any more questions. He's also quite blunt (aka 'frank'). Some recourse to the wonderful world of the web (particularly to the Kentucky Spinal Institute who had some good explanations) was needed. When copies of his letters to the other specialists arrived, I understood a bit more:
(1) Ms L Woolfenden
St Andrews Care Centre
I would be grateful if you would see this patient who has severe degenerative changes in the lumbar spine and cervical spine. I am due to bring her in for some diagnostic blocks and would be grateful if you could teach her some exercises based on ski-walking, hydrotherapy and suchlike - avoiding extremes of flexion extension.
(2) Dr B Hazleman (the first consultant), cc: Dr C Connolly (my GP)
Many thanks for asking me to see this lady who has been suffering with increasing neck and back pain. In her neck, though she has mainly mechanical symptoms she does indeed have some pins and needles in her left little finger and associated weakness of finger abduction. However her main pain as you say in your letter is her back. This is essentially mechanical in nature, which may be exacerbated by sitting which unfortunately she does a lot of. She takes CoDrydramol or suchlike for the pain as she is asthmatic and feels she may react to NS, though she has used Neurofen in the past. You kindly report the result of the MRI scan which shows some disc bulges, perhaps some impingement of the left L4 nerve root, but all her symptoms are in her back of an aching quality, though interestingly when her back pain becomes particularly bad her legs also go cold. Hyper-extension causes sensation in her back though no obvious reproduction of pain and similar results with lateral flexion. Forward flexion was to just below the knees. There was both midline and paraspinal tenderness though the paraspinal was more marked especially on the right hand side. Straight leg raise on the right was to 60degrees causing pain in the back and on the left to 90degrees.
I explained to Mrs Wilson that in cases like hers there was a significant chance of pain coming either form the lumbar facet joints or derived from lumbar discs. We could do test blocks to decide if pain was indeed rising from these structures, and if so offer her the possibility of more permanent treatments either by denervation of these structures or by blocks of the sympathetic system. I will bring her in on the 28th October for her first set of diagnostic facet joint blocks. She understands the first blocks are temporary in nature and may cause an exacerbation of pain before relief if any is obtained.
I am more interested in the extent of pain relief rather than the duration of it. Thank you for referring her and of course I will let you know what transpires.
Well, hydrotherapy was now on my BUPA forms, too - another expensive thing that I should be able to claim for (more claim forms!). Post being somewhat slow out in my little village, I only got these the day before the first hydrotherapy appointment:
Update on last night's assessment with Fiona (not my existing Fiona, another one - this could get confusing). I was in reasonable shape having been osteopathed, so more mobile than when I saw Dr Munglani. Great concern anyway :-(. Left shoulder higher than right, neck twisted out of shape. Long session examining muscles - yes, I haven't got any. (well, the left shoulder is strong as is the lower right back) I need to build up muscles to support my spine, since it can't support itself. I've got some exercises to do at home (and I did them this morning, too) and I will need more therapy sessions - booked one next week which will start in the hydrotherapy pool.
I felt very lucky to have the hydrotherapy centre right there in the next village to mine. Making appointments was easy, too, since they were open so much of the time. The exercises at home weren't great, though Mike loved some of the positions that I got in! And, yes, BUPA would pay [subject to the odd Gotcha! later].
And so I reached the end of the non-surgical bit. I wasn't at all sure if I wanted Dr Munglani to go in and kill my nerves - they were saying that I hurt and that was useful, surely? But the diagnostic operation (on the lower lumbar area) wouldn't be permanent, and it was the only treatment on offer. So...
On to what happened next.
Words (c) Sophie Wilson, 1999-2002. Back to my Home Page, or go to my page of things to do about it all.