spineally challenged Charite III, L5/S1 , L4/3 November 2003

[iSpine-Admin]

Originally Posted by spineally challenged on November 3, 2003

Friday 18th - Friday 25th : Things continued to improve pretty much day on day. There was still a fair amount of both leg and back pains but these came and went and gradually we increased our activities and by the end of the week we had visited a castle, 2 parks and the Town centre travelling by tram and bus and underground. We managed by the end of the week to eat out twice although the sitting proved uncomfortable and on both occasions I bailed out early leaving my wife to pay the bill while I returned to our room for a lie down. I continued with the Gyrotronics until the Thursday and I strongly recommend this therapy.
Gradually I decreased my meds. But was still taking the Novocain drops + sleeping pills on our return – although within a week I was managing with nothing other than the occasional paracetomol + codeine..
The flight home was 2 hours + a total of 4 hours travel either side – this was hard work and by the time we got home I was pretty uncomfortable and very tired.

The whole experience was one big physical and emotional roller coaster for both me and my wife but it was do-able. I was relieved that we left our kids at home in the care of grandparents as I think they would have found it tough going and we found it hard enough coping ourselves without having to worry about amusing 2 kids for nearly 3 weeks..

RATE FUNCTIONALITY / SATISFACTION AT INTERVALS BELOW:

FUNCTIONALITY:
1. Very poor: much worse... disabled after surgery.
2. Poor: worse after surgery.
3. Neutral: No improvement, or improvements offset by new problems.
4. Fair, some improvment, limitations are still serious.
5. Good, substantial improvement, some limitations.
6. Excellent: no limitations.

SATISFACTION:
1. Very sorry I had the surgery.
2. Somewhat sorry I had the surgery.
3. Too soon to tell, or I'm ambivalent about the surgery.
4. I'm somewhat glad I did my surgery.
5. I'm very glad I did my surgery.

FUNCTIONALITY: 4 SATISFACTION: 3 [6 WEEKS POST-OP]

FUNCTIONALITY: 4 SATISFACTION: 3 [3 MONTHS POST-OP]

FUNCTIONALITY: 2 SATISFACTION: 2 [8.5 MONTHS POST-OP]

FUNCTIONALITY: 2 SATISFACTION: 2 [1 YEAR POST-OP]

FUNCTIONALITY: ___ SATISFACTION: ___ [2 YEARS POST-OP]

6 WEEKS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ECT...:
I am walking 2-3 miles per day and my back is feeling stronger week on week. However unfortunately I have left leg pain and numbness both of which increase markedly with sitting and standing. The leg pain and some back pain have been present since the surgery but the leg pain really increased at about 4 weeks – the back pain has decreased and is continuing to improve as I become more active. I am hoping this will improve with time and appropriate physiotherapy. I am on no painkillers

3 MONTHS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC...:
I am still walking 2-3 miles per day. My sitting tolerance has increased and I can sit for 2-3 hours in relative comfort in a comfortable chair or sofa. I am still suffering from varying degrees of leg and low back pain – these are improving but I still at times struggle to remain active / upright for the entire day. I am having particular problems with a pain deep in my right butt / hip area – this comes and goes but is easily triggered and stays for several days at a time. I have started Pilates based physiotherapy to build up my core muscle strength but find that these exercises sometimes aggravate both the leg, back and butt pain. When this happens I stop the exercises for a day or two and continue when things have settled down. I have returned to work part time as a web designer but as things stand feel it is unlikely I will be able to return to my previous more physical job as a furniture maker. I am still not taking any painkillers.

8 MONTHS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC...
Well here I am at 8.5 months and all is not well. I am suffering increasing and pretty constant low back pain accompanied by a wicked muscle spasm in the right buttock which has the annoying habit of wrapping round the hip and into the front of my thigh – not fun. My activity levels have dropped considerably in the last 12 weeks and I am again having major problems with sitting and standing. Everyday life is a struggle…
Some days are easier than others but the general pattern is not so great. Things seem easier in the mornings but as the day progresses so does the pain levels (or perhaps my tolerance to the pain decreases) and I am forced to lie down which gives relief for the back if not the muscle spasm. My suspicion is that the supposedly redundant L4/5 is causing the problems – perhaps it doesn’t like being sandwiched between the two mobile ADR’s at L3/4 and L5/S1….
I tried taking anti-inflammatories but apart from making me nauseous these had no effect on the pain. Diazepan helps a little with the muscle spasm and co-proxamol takes the edge off the pain when it’s at its lower levels – most of the time though I tough it out and thankfully I can still find relief with lying down.
I am currently awaiting a fresh MRI to look for any possible post-op changes to the L4/5 and/or the L2/3.
I wish I had more positive news to share with all you prospective patients but my history is both lengthy and complicated so I perhaps never was the ideal patient ..

1 YEAR POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]):
Now 14 months post op. Things have continued to deteriorate – for the last 5 weeks I have been virtually house bound. 90% of my day is spent lying down.
The last 6 months have seen a marked increase in back and more recently leg pain. Before surgery I didn’t really have a big problem with leg pain – yes some tingling / pins and needles but nothing that would have stopped me.. About 4 months ago I started to notice an increase in the pins and needles, my feet would feel cold and I’d occasionally get cramping pains in my calves. As time has progressed these symptoms have worsened to a point were 5 weeks ago it became difficult to be on my feet for more than 5 mins. The cramping pain can be very intense and can only be relieved by lying down (note this isn’t muscle cramping as the muscles feel relaxed to touch so I presume this is nerve pain..). In the last week things have become slightly easier and I can manage 20 minutes upright but have to be very careful not to go back down hill again. In the last week I have started walking again but only half a mile once a day which is a big reduction from my last post. My back is very delicate – the back and leg pain are controlled by lying down but they are easily aggravated. Worryingly and somewhat ironically as my activity levels have decreased I have started to notice some new symptoms further up my back which I fear may be linked to the L2/3..
The MRI mentioned above showed no obvious change with the L4/5 – still as flat as a pancake but otherwise unchanged. The L2/3 reportedly is showing signs of continued degeneration but nothing remarkable – possible mild stenosis but no bulge.
The likely culprit still remains the L4/5.
Currently considering my options………

Again I wish I had more positive news to share!

2 YEARS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]):

Waiting for an update from spineally challenged.

[Tim]

2 YEARS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]):Not a great year! Of the preceding 12 months 6 have been spent pretty much housebound. In the other 6 months I've been able to walk but not much else. I'm still considering further surgery either fusion or additional ADR at the 4/5 but am currently pursuing less invasive avenues to determine what if any role the facets are playing in all this. Trying to stay positive..

3 YEARS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]):Again not a great year. In the main I’ve managed to keep walking throughout the year but still have great problems standing, sitting or doing anything even remotely physical. I have had periods when things have been easier but these are so easily ended and often short lived. I had facet injections at all 3 levels almost a year ago and these made no difference to my condition either positive or negative. The remaining L4/5 remains the likely culprit. I remain cautious of further surgery but haven’t ruled it out. Cost and the risks of repeat surgery remain as huge real deterrents from moving forward.
I am unfortunately still worse off following surgery.

4 YEARS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]):

5 YEARS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]): Pretty much the same as at 3 years. Again I’ve managed to keep walking throughout the year – usually only one walk a day at a slow pace. On better days I sometimes manage a short second walk. The rest of most days is spent lying down with short breaks to potter around the garden or house. I still have great problems standing, sitting or doing anything even remotely physical. Driving is limited to 20 minutes (30 minutes on a good day) so travel is limited. I still have periods when things are easier but these are too easily ended and often short lived – Catch 22 really; you feel a bit easier do a bit more and end up feeling bad again. This cycle repeats over and over…
I’ve now had several offers of surgery at the remaining L4/5 but remain hesitant. I had a repeat discography at L4/5 in the Autumn but sadly the results were inconclusive – the disc is so shot that it couldn’t hold any pressure. The doctor who did it still feels that such a badly degenerate disc is the most likely suspect but only offered me odds of a 50% chance of making me 60% better! He wanted to use a minimally invasive MAST TLIF approach with BMP which I must admit is more attractive than the open alternative. I’ve also researched the XLIF approach but this is pretty new in the UK and I don’t really want to be part of a surgeons learning curve.
One of my major worries is the lack of a definitive diagnosis. I worry that some or all of my problem might be coming from the ADR L5/S1 level – certainly the bilateral leg pain I suffer from follows a typical L5/S1 dermatome. As yet no surgeon has suggested revising the L5/S1 ADR level but I wonder if they’re blinded by the obviously degenerate L4/5. Perhaps I need to ask more questions about the L5/S1 – maybe there are more tests that could help to rule this level out..?
Basically I still can’t rule out further surgery but would love to have a more definitive diagnosis before committing..