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

[iSpine-Admin]

Originally Posted by spineally challenged on November 03, 2003

SURGERY DATE: 11.7.03

AGE AT SURGERY DATE: 41

SURGEON: Dr Zeegers

SURGERY LOCATION/CLINIC: Alpha klinik - Munich, Germany

DEVICE(s), LEVEL(s): Charite III, L5/S1 , L4/3

COST =
AMOUNT BILLED:
Surgery including all tests, hospital stay, and compulsory corset: £16063.70
Physio: £348.85
Massage: £276.06
Extra £76.99 for extra tests following some post op complications. Hotel: £1985.56
INSURANCE ALLOWED: None
OUT OF POCKET: All of it - £19206.16
TRAVEL: £455 includes flights and travel insurance
EXPLANATIONS?

ONSET OF LUMBAR PROBLEMS, DATE OF INJURY, CAUSE, ETC...:
In 1986 I suffered an acute attack of low back pain, which took a month to recover from. 3 months later I was working in a bent-over position when my back started to ache. By the evening I had severe pain in my back and left leg and my spine had taken on a ‘skewed’ appearance.
The following year consisted of long periods of intractable leg pain (left leg) which culminated in me being referred to an Orthopaedic surgeon. A CT scan showed that the L4/5 disc was degenerate and associated with a degree of spinal stenosis. In July 1988 I was operated on at 3 levels L3/4, L4/5 and L5/S1 to decompress the nerve roots and relieve the stenosis.
Following surgery my recovery was slow. My leg pain returned and could only be relieved by lying down. Standing or walking remained very painful for 12 months following surgery. My lumbar mobility and strength remained poor particularly in flexion.
Gradually from early 1990 the acute vulnerability of my back decreased. I started to work again as a cabinetmaker. I continued to be troubled but in the main the attacks of leg and back pain became less acute and could be ‘worked through’ by adjusting my work to suit my level of disability.
Towards the end of 1994 things took a turn for the worse. I repeatedly suffered acute episodes of disabling back pain, which could only be eased by bed rest. Following one particularly bad episode I was in acute pain for 6 months spending much of my time in bed where I got some relief. During this period I could no longer work and I was forced to abandon my business as a self employed Cabinet Maker. Even household chores became difficult & often impossible.
Following an MRI in 1995 I was placed on the surgical list for a spinal fusion at L4/5 and L5/S1. Following discussion with the surgeon I decided not to proceed with fusion but to follow a course of rehabilitative physiotherapy. This combined with drastically reducing my level of physical activity resulted in lessening the frequency of the acute episodes and I now found myself with chronic back pain/discomfort, occasional acute flair ups and a severely restricted lifestyle. The acute episodes were now characterised by crippling back pain and only mild infrequent leg symptoms.
To achieve this fragile level of ‘stability’ in my back I had had to make many life changes. Along with avoiding all strenuous physical activities I had to avoid sitting for any length of time. Sitting resulted in immediate discomfort and frequently prolonged sitting was followed by an acute episode of back pain, which usually saw me bedridden for up to 4 weeks. I tended to lie down whenever possible which was fine in familiar company but very embarrassing and quite frankly impossible in many formal situations. I now work from home as a web designer and have designed a computer workstation, which enables me to work lying down.
My work, home, family and social life were all affected by my physical limitations.

Whilst for the most part my pre-surgery symptoms were not crippling my life was necessarily severely restricted in order to keep my back as pain free as possible. For many years I battled against my symptoms pushing my back to its limits and beyond so that I repeatedly ended up in acute disabling pain. I learnt with time that by avoiding certain activities principally anything strenuously physical and prolonged sitting that I could in the main keep my pain levels tolerable. However the limits this placed on my life were in my mind unacceptable.

PRIOR SPINE SURGERIES AND PROCEDURES:
Decompression / Laminectomy: In July 1988 I was operated on at 3 levels L3/4, L4/5 and L5/S1 to decompress the nerve roots and relieve stenosis.

PRE-OP MEDICATIONS:

PRE-OP DIAGNOSTICS:
Discogram - 4 levels. L5/S1 and L4/3 were extremely symptomatic. To everyone’s surprise L5/4 although the most degenerated level was found to not be a pain generator. L3/2 was used as the control level. This procedure was done with no sedation and was extremely unpleasant but it is the definitive test and the extreme pain was only short lived..
MRI and X-Rays

PRE-OP NEUROPATHIES:
Slight numbness/tingling predominately in left leg.

PRE-OP CONDITION:
Leg pain 5%, Back pain 95%. For pain levels, ability to work and function, disability status, etc see ONSET OF LUMBAR PROBLEMS, DATE OF INJURY, CAUSE, ETC above

TIME POST-OP AT ORIGINAL POST HERE: 16 weeks

DESCRIBE YOUR SURGICAL EXPERIENCE:
The Klinik and Dr Zeegers were both excellent. Dr Zeegers was confident and compassionate and the nursing staff were all kind and professional. The vast majority of the staff spoke excellent English.
Thursday 10th : Arrived at Klinik at 12.00 midday for pre-op tests and surgical consult..
X-Rays, MRI, Flexibility test, Discogram, test for back muscle strength ( found to be 70% below norm.). We saw Dr Zeegers for the final consult at about 9 PM and it was decided to proceed with ADR surgery on 2 levels the following morning at 9 AM.
After this emotionally and physically exhausting 9-hour day at the Klinik we returned to our hotel to await the morning..
Friday 11th : Arrived at the klinik 8.45. I said goodbye to my wife at 9.15 AM and the operation started at about 10.00 AM. I was returned to the recovery room about 3 PM after a 5 hour op.. I had lost 2+ litres of blood during the operation when a small blood vessel was torn and needed a transfusion. The blood loss + anaesthetic left me extremely weak – Dr Zeegers asked me to try and stand in recovery and while this was physically possible I almost passed out and was hurriedly returned to a recumbent position. I was finally returned to my room at about 8 PM. The rest of that evening I slept on and off but also found the energy to phone friends and relatives and was surprisingly chirpy… I had no extra pain relief that night other than what had been administered directly postoperatively.
Saturday 12th: I woke feeling OK’ish – my back was slightly sore and I seemed to have no leg pain. The incision (20cms) was sore – particularly when coughing/sneezing but was manageable. With the assistance of the nurse I made it to the toilet but almost passed out and had to once again hurriedly retreat to my bed. Following medication my dizziness subsided and by the afternoon I was walking up and down the corridor and chatting with my fellow patients. Thin broth soup for supper only water to drink..
Sunday 13th : The medication (Novocain drops) seemed to be controlling my post op symptoms. I walked outside the Klinik for the first time (wearing my corset) and managed about quarter of a mile. Weak broth for dinner followed by mashed potatoes and veg. but still only water to drink. My blood pressure was still low. I had very little back and leg pain.
Monday 14th : Walked up to the next floor for X-rays which confirmed that the positioning of the discs was excellent. In the afternoon walked about half a mile outside the Klinik. Very little pain – the medication seemed to help with the other post op symptoms: dizziness, shivering, sweating.. I had my first real solid food today.
Tuesday 15th : Following an ultrasound test for deep vein thrombosis and news that my blood analysis and pressure were satisfactory I was given the all clear and told I could return back to the hotel. I was given an appointment to see Dr Zeegers on Thursday. In the afternoon I started gyrotronics treatment (only 5 days following surgery). This was a real shock to the system and in retrospect I think it would have been better to start Thursday or Friday. I walked to the Klinik and back for the therapy session a total of about half a mile..
I was released from hospital with only paracetomol and codeine pills. While in hospital I had been on Novocain drops. This sudden drop in medication proved too great and that evening I really crashed – shivering, sweating, feeling nauseous etc. The night was very rough – myself and my wife were both very scared as some of the symptoms were consistent with an infection. I managed about one hour’s sleep..
Wednesday 16th : Following my terrible night we rang the Klinik first thing in the morning and spent most of the day back at the klinik feeling extremely unwell while a battery of tests were performed to rule out infection. In the end my condition was stabilised by reintroducing the drugs I had been on whilst in hospital along with anti-nausea drops. We finally got back to the hotel about 4 PM and by the evening I was sufficiently recovered to take a short walk to the local shops followed by a reasonable nights sleep. In retrospect I feel the terrible previous 24 hours could have been avoided – had I been released with the same drugs I was on whilst in hospital then I would not have crashed.
Thursday 17th : I felt much better today and we managed a walk to the local park where we sat on a bench and watched the world go by. My appetite was much better though still not normal. I resumed gyrotronics again walking there and back and the experience was much better than on Tuesday. After gyrotronics I rested for the remainder of the day and had a reasonable nights sleep although I was woken up very early by severe leg nerve pain which strangely went away when I got up the next morning.

Continued...

[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..