I am 37, married, 2 boys and been living in South Africa for 5 years. Previously I was farming in Yorkshire in the UK.
My 'back history' goes back to 1985. I fractured 3 vertebrae whilst playing rugby. Eventually I had a fusion T5 - T10 in 1987. I was warned at the time that I would experience problems with my back in later life (I thought later life meant 60's or 70's.).
I returned to active life, farming, etc. I immigrated to South Africa and set up a company in the Cape. During this time I had basically no problems other than the occasional spasm & 'twinge'. Then in 1997, I experienced great pain in the lower back and was diagnosed as having a disk protrusion at L5/S1. I then underwent operation number 2 of a discectomy & laminectomy in this area, which was successful.
Then last year the fun really started. Please forgive me for the lengthy & complex nature of the next bit, but I have copied my surgeon's report in full:
'He has complex multilevel (9 levels) spinal degeneration (C5/6, T3/4, T4/5, T6/7, T7/8, T8/9, T10/11, L4/5 and L5/S1). He had multiple spinal operations 6 in total of which 4 was done during 1999. He has complex and disabling muscle weakness and sensation loss in both legs and feet more so on the left side. He presented with a Cauda Equina type of syndrome during April 1999 with sparing of the anal sphincter and rectal tone. Unfortunately a specific diagnosis could not be made due to the fact that he had fractured subliminal wires as well as substantial metal fixation in the thoracic spine and the radiologist suggested that the metal first be removed before he could have a MRI investigation.
The thoracic metal fixation was removed on 14.05.99 and thereafter a MRI investigation was done on 17.05.99. It showed central disc protrusions at the levels T4/5 and T6/7 as well as a prominent (R) posteromedial disc protrusion on the level T10/11 with narrowing of the (R) lateral recess and medial aspect of the T10 neural canal. He underwent a thoracic discectomy at the TI0/11 level on 21.06.99. The operation was extended and complicated by fibrosis. It was decided that he would be given time to recover and that a follow-up lower back operation would be done after 6 weeks. On the MRI dated 17.05.99 a broad based central disc protrusion was seen at the L5/S1 level which encroaches on the thecal sac and S1 nerve roots bilaterally. There was also narrowing of the inferior recesses of both neural canals. At the L4/5 level there was also posterior annular bulging of the disc with compression of the thecal sac and narrowing of the inferior recesses. Early degenerative changes of the fact joints at the level L4/5 and L5/Sl were also seen.
In the 6 week waiting period pre-operatively Mr. Davies' condition deteriorated. He could not walk in the last 5 days pre-operatively and he had severe pain. On examination directly pre-operatively he had extensive and severe sensation loss in both legs. There was no feeling to pin prick on the lateral sides of his lower legs and feet extending up to his buttocks and peri-anal area including areas S2, S3 and S4. He had weakness in both lower legs, more pronounced on the (L)side.
During the operation I did extensive decompression of the 4 lower lumbar spinal nerve of LS and S1 bilaterally. The (L) S1 nerve root was visibly thickened and abnormal and the (R) S1 nerve root to a lesser extent. 1 made sure that both lateral recesses were adequately decompressed and that the 4 mentioned nerve roots were free of compression. I did a subtotal bilateral laminectomies of L4 and L5 and removed both the 2 lower discs bilaterally. I then fused the L4, L5 and S1 segments with intrapeducular screws and rods and placed autogenic bone graft in the lateral gutters (L) and (R). Due to the complexity of the procedure the operation time was extended.
In the first 10 days postoperatively the patient deteriorated further and I decided to take him back to the operating room after I did a follow-up MRI scan which showed quite a lot of blood product surrounding the dural sac in the lower segment. I cleared the wound area from all blood product and Spongistan, followed out all 4 nerve routes and replaced the bone grafts. After this procedure his pain gradually decreased and muscular power in specially the (R) leg gradually increased so it is now almost normal. The muscular power in the (L) leg gradually increased to be at this stage 3+ or almost 4-. His buttock muscles unfortunately remained very weak so that he cannot balance himself in the upright position. He cannot stand on his own and he mobilises with great difficulty.'
Since this report I have undergone another operation (number 7) to remove the latest metalwork. I can walk short distances with crutches, but use a wheelchair for mobility. I take a wide variety of pain killers and anti-inflammatories, on a regular basis.
I hope that by joining this group, I may be able to support people faced with similar problems and also to keep myself abreast of the latest developments in the treatment of this syndrome.
I am 16 months since my 'big' operations - I had a small one last April to remove the metal fixations from my spine. I have also been diagnosed this year as having adhesive Arachnoiditis.
I still cannot stand un-supported, and can only walk short distances (4 point walking) with crutches. I am getting much more mobile in the wheelchair though. I have just installed chair lifts in my house to avoid the difficulty (& danger) of stairs. My major setback during the year was falling down them when a crutch collapsed. I have also been able to drive again - which was certainly the highlight of the year!
I have numbness from the waist down, other then some feeling in the instep of both feet and to a lesser degree on the inside of my legs.
I have experienced a frightening amount of muscle wastage on both legs, but especially the left leg. I think that the physiotherapy has slowed this wastage down rather than stopped it. I do 2 hours a day at home and go to the gym for a further hour 2 times a week. I have had to learn to be careful when doing exercises at the gym, as I have hurt my back on several occasions. I now have a Bio-kineticist who oversees my every move there. The main factor affecting my mobility is the weakness of my bum muscles, and not being able to 'lock' my left knee. I wear a calliper on that leg.
Bladder & bowel movement not normal, and often need some 'assistance', but no need to cath. Sexual function absent - but not forgotten!! :-)
Medications - 1200mg Neurontin; 1600mg Ibrufen Retard; 70mg Emdalen; 7.5mg Imovane; 16mg Xefo; & Lentogesic when required. I HATE taking any medication, and have tried reducing all of the above but with no success. I seem to be just in control of the pain most days.
I run my own company so am able to work from home & keep 'flexi' hours to a certain extent.
The major difference for me this last year has been a mind-shift. This time last year I was getting very frustrated & depressed that there was little or no improvement. I have since decided that I am better getting on with life as I am now and making alterations so I can cope. If any improvement comes from here it will be viewed as a bonus. It may appear negative to some, but it helps me deal with it.
Yet another update March 2002
Another year has passed since the last one. My physical condition has certainly 'plateaued' or perhaps slightly deteriorated. Some of the deterioration is certainly due to me cutting back on the physiotherapy, and relying more on my wheelchair & lifts. I never even try to walk with the crutches anymore, and am so 'out of practice' with the stairs that I wouldn't want to attempt them again.
I now need both legs in calipers for the short distances that I move upright. It certainly isn't walking but I have to move from the back of my car to the driver's seat after putting my wheelchair in the back. I now have to use a catheter twice a day.
I was diagnosed as having "Major Depression & Melancholia" after seeking psychotherapy. I gave up with therapy after 6 sessions with two different 'experts'. I certainly cannot recommend that line of medicine to anyone - I did not have a good experience with it. I tried different anti-depressants, but returned to the Emdalen…at a higher rate! Actually I missed the medication change in my last update. We have replaced the Xefo & Lentogesic with 120mg MSContin (slow release morphine sulphate). That has enabled me to reduce the Ibuprofen by 50% as I ended up with stomach ulcers. I was shocked with some of the statistics I learnt about NSAID's, and certainly feel that the dangers need to be explained more. I now need to take a maintenance dose of a medication (Lanzor) to avoid future problems there.
I have also had some problems with internal organs; in particular I have had problems with wildly fluctuating blood glucose levels & blood pressure. I was offered yet more medication to control these, but refused, preferring instead to try to control them through diet & lifestyle. I hope that this isn't a sign of things to come.
So physically I have remained fairly stable, mentally I have not done so well. I admit that I seem to be struggling more with that side of things. But rather than appear too negative, I would like to stress that my case is in no way typical of CES. The Adhesive Arachnoiditis probably contributes more to my more severe symptoms. Also the degree of recovery seems to be directly related to the length of time that the Cauda Equina is compressed. My case was untypical in that other problems had to be dealt with first before the pressure on the Cauda Equina could be relieved. This meant that the compression remained for approximately 6 months. I do not blame my surgical team; they had to deal with more urgent problems higher up my spine & give me time to recover in between each surgery. I possibly represent the worst end of the scale when it comes to recovery.
I have to face future surgery at some stage. Of the initial 9 problems identified only 3 have been fixed. I have MRI scans and ECG tests on a regular basis. Each time the protrusions seem to have changed, some are decreased, and some increased. We feel that the only way to completely avoid further surgery would be to remain completely immobile. I am not ready to do that yet. We try to minimize any strain on my back, and also avoid flare-ups caused by stretching or rotating the spine, by wearing a large plastic body brace from hips to armpits. That does seem to help. I also wear support stockings from toe to waist to lessen the problems with edema, and that certainly seems to work well.
I would be happy to talk to anyone about this, and related subjects. Particularly people in the early stages of recovery, as I know how lonely that can feel when you think you are the only person to have this condition. I would reiterate though that my case is exceptional and completely untypical of CES.