My Story - Sarah Smith, MD:
NEARLY 4 years ago, I was told there was nothing more that could be done for me, that I just had to go away and get on with life!

It may seem odd to start three-quarters of the way through my story, but for me this was the pivotal point in my experience of chronic pain: it marked the time when I decided to stop being a victim and take back some control over my life. It was a question of do or die, basically.

Now I know that sort of experience is not at all strange to many of you, sadly the majority of us have at some point been "left to get on with it". I want to start my story by telling you the end first..

Nowadays, I still have the same amount of pain as ever (if not more!) but I have the invaluable opportunity to share my experiences with members of groups such as ASAMS and COFWA (both relating to arachnoiditis) as well as being a patron of the UK Arachnoiditis Trust. I also belong to other online support groups, such as the Cauda Equina Syndrome Support Group and NASAP, a chronic pain group.

If ever I get a time of feeling sorry for myself, all I have to do is read some mail to make me realise that things aren't so bad and at least finally, after years of feeling like the only one in the world with my problems, that there are others out there who know what I'm going through.

I don't want to labour on about my history in detail, so here is a brief summary. This year I am passing the 20 year anniversary of my time in pain.

In my teens I had back and leg pain, and finally, age 19, I was diagnosed with hypermobility syndrome, which means loose joints. This chiefly affected my hips, so as time went on and I got more and more leg pain, no-one, myself included, thought of my spine, we all thought it was related to my hips.

To cut a long story short...in 1986 I qualified as a doctor and later, I married and had 2 babies within 13 months of each other(I gave up work, fully intending to restart in a couple of years). My back and leg pains got gradually worse: particularly if I was standing for any time, such as in a supermarket queue.

Then one day, I suddenly developed severe back pain such that I couldn't walk, and a day or so later, severe pain down both legs...the only trouble was..I had a feeling I might be pregnant, and sure enough, I was, so no investigations were done.

I went on to have trouble with my pelvis opening up during the pregnancy (I felt unhinged, and I don't mean mentally) due to the hormones. I was put on traction, but of course, that didn't help!

The orthopaedic surgeon was most insistent that this was entirely pregnanct related, even though I repeatedly told him that I'd had problems before.Luckily the birth went very well.

I didn't return to the orthopaedic surgeon until my little girl was 9 months old (to avoid him saying again it was a pregnancy problem!) In the meantime, I started to question my own sanity. I had been told for years there was nothing wrong with my back and I knew my symptoms weren't typical of a disc prolapse.One day, I looked at a book in the medical library at the hospital where my husband was working..and found out about stenosis...the sheer relief at finding a description of what was wrong with me over-rode any concern about what the implications were.

After an MRI scan, I saw the surgeon again. He said I had 2 prolapsed discs, and although the MRI report said "narrowing" and I asked about stenosis (which is narrowing) he said I didn't have any. He recommended an epidural injection.I was in so much pain that I agreed.
By this stage I couldn't stand for more than a minute or walk across the room without severe pain.

In the next couple of weeks, whilst awaiting the epidural, I developed bladder trouble...I had bouts of incontinence and had oins and needles in the saddle area. My medical training told me this was an urgent problem..so I telephoned the surgeon's office where I spoke to his secretary. Next day, she returned my call and said that the surgeon was quite happy for me to go ahead and have the epidural, which would be in a couple of weeks!

I didn't know what to make of this! To be honest, over the years of being told my problems were all in my head, and enduring constant pain, I had lost so much confidence I didn't act immediately. In hindsight (isn't hindsight a marvellous thing!) I should have gone straight to the hospital..but I left it 3 days until I went back to my GP.

Within an hour, he had arranged a bed at the nearest neurosurgical unit (60 miles away) and the consultant rang me at home, very concerned.I told him I couldn't go in that night as my husband was out at work and I had no-one to look after the children. he said he would see me no matter what time I arrived!

Anyway, moving on a little: I went in the next day and a repeat MRI showed the 2 discs and severe stenosis..quite how I went from none to severe in a matter of 3 weeks has never been (and can't be!) explained!

I underwent a decompressive laminectomy but had some trouble post-op with more pain: apparently due to the nerves having been so squashed that they reacted badly once released. My post-op analgesia was practically non-existent as my blood pressure had dropped dangerously low, so I came to in the most intense agony I have ever experienced (normally they would put in an intravenous morphine pump).

Well, I had a month or so of relative relief, but within 3 months of the op. I was having more pain and weakness in my left leg: a repeat MRI showed severe epidural fibrosis, entering the thecal sac (so intrathecal as well, i.e. arachnoiditis)..which the surgeon said would "settle down"!!

That was all in 1995/6. By the end of 96 I was almost at the end of my tether. I had sever abdo. pain as well as back and leg pain, and this was possibly due to a small fracture in the body of the T10 vertebra (how this happened is a mystery)

I went into hospital for 2 weeks' assessment..I was also getting a lot of joint problems (later diagnosed as non-specific inflammatory arthritis) so went in under the Rheumatologists.

I had some hydrotherapy and tried tegretol for the pain, but felt extremely nauseous, so had to stop it.

Then I made a big error...I was offered an epidural steroid injection and I accepted the offer with alacrity!

After the procedure, which was very painful, I had the all over shakes and was freezing plus my blood pressure dropped..and no pain relief..which brings me back to my starting point (3 years ago).

In the past few months, I have unfortunately found that my condition has somewhat deteriorated and I have been investigated for Multiple Sclerosis, which arachnoiditis can mimic.

I agreed to undergo a lumbar puncture, as it was suggested that this would enable a greater chance of detecting MS, and thus perhaps beneficially impact on what treatment I could have for the new symptoms I was experiencing. I was unlucky: due to extensive vascular scar tissue, I had a "bloody tap" : the blood acted as an irritant to the nerves and exacerbated my condition.

It took several weeks for things to settle down, and regrettably I have probably lost some irrecoverable ground. It is, however, just bad luck, rather than any bad management. It does illustrate, however, how careful one must be in weighing up whether or not to undergo an invasive test.       

I am now managing to maintain a reasonable level of pain and an acceptable quality of life using relatively small doses of slow release morphine and an antidepressant. This is quite a common combination in treatment of nerve pain.

At one time, like many people, I was somewhat wary of taking strong painkillers: I feared addiction and serious adverse effects: but since researching thoroughly for the articles I write I have realised that many of these fears are groundless, or are minimal in comparison with the benefit I have gained from a reduction in my pain level.I did not really realise until the pain was successfully reduced, just how much it was costing not only me, but also my family, to fight the pain without any weapons. The ongoing, day in, day out struggle was incredibly debilitating and wrought ill effects not only on myself, but also my nearest and dearest. Since treating my pain more aggressively, I have found that other symptoms such as excessive sweating, irritability and poor sleep, have troubled me to a markedly less degree, and overall, my life has improved considerably.Contrary to my concerns, I do not find myself less able to think straight, indeed, I now realise just how much my previously high pain level reduced my capacity for short-term memory and decision-making in particular.

I am currently awaiting further investigations.....but will refuse another lumbar puncture as on balance, the possible benefit I could gain from the results of the test now seem to be outweighed by the risk of making my condition worse still.... the saga continues!!

I  hope to continue to write my articles and communicate with other arachniacs from all over the world as I have found enormous comfort and encouragement on reading  about the immense bravery of others faced with this unrelenting condition, and feel that what little I can do, using my medical training, to pass on useful information, means that my illness is not purely a negative thing: something good can come of it at least, albeit of only minor influence.

One thing I am absolutely determined about is that I refuse to be defined by my illness...and my motto remains:

"To strive, to seek, to find..AND NOT TO YIELD!" (a quote from Tennyson)  

Sarah Andreae-Jones MB BS
Patron of the Arachnoiditis Trust
October 2000    

(To see Dr Sarah's Resume, Click Here)