don't give up hope

[Vicky J]

Hi everyone,

I haven't posted here for many many months, partly because for some reason I seemed to have been 'locked out', partly because I didn't have good news and didn't want to discourage others, and more recently because Alastair and co have started a dedicated UK site for us bad teeth pommies! Dale was going to post on my behalf but hey, I've been accepted today.

I hope my story will help some of you guys having a slow recovery. I had 'just' one level ADR surgery (L5 S1) with Dr Zeegers in Muncih in September 2005 - yes over 18 months ago.

For at least a year my back pain was only slightly reduced. The only improvement post surgery was that the pain didn't always start up as soon as I woke up so I could sometimes lie in bed in the morning and read for an hour or so without pain. Also it was never as excrutiating as it had been before surgery. Sitting which had been hell, was easier so I could drive a bit but I still couldn't walk far and any standing was hell.

I didn't regret having the surgery as there was some improvement but it was not at all what I had hoped for or indeed expected. I was a good candidate - only one ruptured disc, good bone density and in otherwise good health despite having chronic back pain for over 5 years without receiving a diagnosis.

By last summer - 9 or 10 months post surgery I was back in the depths of despair, convinced it hadn't really worked and there was something else also causing my pain. I'd been back to Germany but Dr Zeegers hadn't been able to identify the cause of my continuing pain. he injected my facet joints but that didn't help at all. I came home and continued 'doctor shopping',went back to hypnotherapy, psychotherapy, anti-depressants, acupuncture, specialised back strength training - all to no avail.

In September 2006 I went to see John Sutcliffe, one of the top spinal surgeons in London who runs a private clinic. He works with a team of medics including a pain specialist, an osteopath, podiatrist and physiotherapists and this team meet every two weeks to discuss any difficult cases. He was happy with the look of my surgery but agreed to discuss my case at one of his team meetings at which I asked to attend.

Very quickly the osteopath and physiotherapists agreed that my pain was almost certainly postural and muscular - in layman's terms that I was standing with too much lumbar extension putting pressure on the lower back and also over-using the large outer muscles along the spine whilst the smaller paraspinal muscles were not being used at all.

I have now had 6 to 7 months of weekly physiotherapy and do about 30 mins of specific excercises every day. Through the subtle programme of this fantastic young New Zealand physiotherapist I have gradually learned to use my body differently and the pain has gradually diminished. It hasn't gone completely but there are parts of days when I have no pain at all, the first time since January 2000! And when I do have it, it is NEVER as bad as it was. I'd say on a bad day I'm 60% better and on a good day 80% better. I can walk fast for an hour and a half or more, cycle at least ten miles, stand more easily (this is still the hardest thing) sit in the theatre or a restaurant. I'm still taking pain killers every day but les than half the amount I was taking even before Christmas. I'm not ready to stop completely yet, mainly because I'm paranoid about the pain coming back, but I'm hoping that in a few more months I'll be off them. And if I'm not, I don't really care so long as my pain continues to reduce. My physio thinks there is still plenty of scope for further improvement as my posture is far from perfect and if I'm tired or not concentrating I resort unwittingly to my old slump.

So my message is two fold - if your recovery seems to be slower than you expected and much much slower than everyone else's - don't give up hope. It amazes me how much pain can be caused by poor posture and muscle tightness and how much it's possible to reduce it with the right therapist, the determination to find them and the tenacity to spend 40 boring minutes every day doing excercises.

On that note - must go and do my excercises....

Vicky

ps I rarely visit this site now we have 'our own' so if anyone does want to reply or ask me anything - please email me at vickyjoseph99@yahoo.co.uk

I hope every ADR patient gets there in the end, preferably a lot quicker than me. Good luck to you all and for those of you who supported me in the early post-op days by telling me endlessly that some people take a long time - a special thank you

[Vicky J]

Dear Matt

Thanks for your mesage and congratulations. Not sure what an Alloy-woman's race is (a feminist ADR Iron Man?) although I'm sure I'm not up to that. Have just returned from an hour and a half stroll and my right leg is hurting. But some medication and sitting down at the PC have pretty much knocked it on the head. So when I say how much better I am it is all relative to pre-surgery when I would sometimes be writhing in agony - and, perhaps worst of all, not know why.

Now over to you and Anastasia, who is very beautiful by the way. What can I say? My heart goes out to you both. I think I can come close to understanding your desperation and I have no idea how I can possibly help you. I wish I had. Her life (and your's too) must be hell.

Now...firstly I don't really think my case was similar. Because you clearly have a far deeper understanding of the mechanisms of the spine than I ever had, it's even difficult for me to say what the similarities and differences are.

My pain appeared in my thigh, seemingly out of nowhere, whilst walking one January day in 2000 and I thought I had merely strained a muscle. I never dreamt that it would get worse and worse, spread to my hip, back, buttocks and groin, take over my life and take over 5 years of endless tests and invasive procedures before I would even get a diagnosis. So when I finally did get a diagnosis - I barely hesitated before leaping into ADR (although I have an unsuccessful minimally invasive decompression and abrasion first - which, had I waited may have turned out to be successful but that's history). The ADR removed a key aspect of my pain but very far from all of it. 9 months later I was crying on the phone to Dr Zeegers in desperation. He offered to remove the prosthesis and do a fusion but I was not at all convinced this was the way forward.

I am wondering why Anastasia went ahead with the ADR when it seems from what you've said that she was getting better before it....? Did Dr Bertagnoli (who is supposed to be, together with Dr Zeegers, world umero uno)do a discography first to prove without doubt that the L4/5 disc was the pain generator?

Anyway I think that all I can really do that might be helpful to you is to try to describe my physiotherapy diagnosis and regime even though it sounds to me, very surprisingly, that the choice of Anastasia's disc was not right and the surgery was not done very well either. Neither the knee surgery which is a terrible additional burden - and shocking to hear that the Alpha Klinik which so impressed me, screwed up like that.

So - my posture when I first saw my current physio was very poor in many respects and most amazing - no one (and I must have seen over a dozen physios, osteopaths and chiropracters as well as alexander, pilates and yoga teachers) had commented on this before. It seems that medical practitioners rarely think outside of their own particularly box, which is why I like the team approach of the doctor I went to in London.

I am quite tall (5ft 8 ins) and as a child was self conscious about my height so have a tendency to round my shoulders forward. I also tend, when I stand, to slump slightly - either backwards, sticking my stomach out, or over-correcting this by sticking my butt out and pulling my shoulders back. Both these positions put pressure on my lower back and cause pain.

More subtly, I had spent several years at Pilates or various back strenghtening programmes unknowingly doing the wrong thing. When asked to pull in my stomach, I was pulling in the upper abdominal instead of the lower abdominals (this is important). In doing so I was also unwittingly tightening the lower back muscles so much to the extent that they were completely 'solid'. Not only was I sort of 'locked' into the wrong position, but the smaller muscles that should support the spine had become redundant. Also my gluteal muscles on one side had atrophied. When I walked I constantly twisted my pelvis instead of controlling the pelvis and just using the buttock and thigh muscles.

The solution has been two fold. Firstly, which is nothing to do with this phsyiotherapist, I have been having a therapy called Intra Muscular Stimulation or IMS (see http://istop.org/)which has helped to regenerate and soften the muscle tissue and secondly I have been following an excercise regime which started with teaching me first and foremost to let go of the upper abdominal muscles so that the back muscles would also relax. The excercise are incredibly subtle - sitting to standing with keeping the back straight and only using the legs; standing on one leg, relaxing the stomach and bending the knee without bending the back; leaning over a bed and clencing teh buttocks tight and holding the pelvis still without using the upper abdominals and lifting one leg up behind and down, and then the other - that sort of thing. Very tedious but over time it has definitely helped me. The IMS has actually changed my lordosis and this can be seen on MRI scans taken a couple of years apart but it was a slow and painful job.

The other thing that helped me a lot, although I resisted it for a very long time, was going back onto anti-depressants. I was prescribed a newish drug called Duloxetine - trade name in the UK Cymbalta - and this is used for pain as well as depression. Best thing I ever did! Talking about drugs - surely you must find another doctor or another drug to at least take th edge off the pain. Have you tried a TENS machine?

I really don't know what else I can tell you. As far as I am aware Germany is the best place to be for medical problems - certainly they seem to be ahead of the UK. I assume you've been back to Bertagnoli...? What did he say? I'm unable to give you any advice whatsoever about anyone in Germany although I imagine you'd happily come to England if you thought it would be helpful.

All I can say is that my thoughts are with you; you are in a really tough situation and I wish I knew a way to help. Just please don't give up hope. Doctors here tried to persuade me that I had classic 'central nervous system pain' and I would have to learn to live with it as it couldn't and wouldn't get better. I didn't believe this and never gave up searching. It took a long time but was worth it. Keep searching, keep trying everything and believe you will get there one day.

[Alastair]

Dear Matt4Ana,
I have just briefly looked at the x-rays and some of the knee x-rays (which I don't fully understand because I'm not a knee person)

Looking at the spine x-rays and the anterior views, prior to surgery then looks as if there is a lot of subsidence there prior to surgery. Was that filled in with cement prior to the pro-disk being inserted? I have just been looking at someone else's x-rays of a very similar nature, and when stood totally upright, the metal plates are touching at the back, as in in Anastasias.

It's very difficult what to say about posture in these circumstances. I know I have been Vicky j`s mentor over the last three to four years. She has been amazingly courageous and persistent to get where she is and has come to a point of accepting how far she can actually go.

Looking at Anastasias problem, although I could say that a better posture might help, and paraspinal muscle exercises improve her situation, the big problem obviously is standing with the weight borne evenly on both feet due to her knee problem.

I would think maybe this solution might be available in the next two to three years, new gels which change consistency when inserted in the body might resolve this. Might a complete new artificial knee joint be the solution? (We are doing this in the UK) Or maybe something slightly less dramatic? I know that's a big invasive step forward, but it looks as if the treatment she had at the AlphaKlinik has been very unhelpful.
Best,
Alastair

PS congratulations on all your research prior to surgery and logic behind what has been done so far.

[Vicky J]

Hi Matt

Hope your Easter was bearable. We've had unusually warm weather in SE England. Pity for all those people who wasted their money (and carbon expenditure) flying to the Med!

A couple of comments:- I cannot urge strongly enough that Anastasia keep trying different anti-depressants until she finds one that suits. I had to try several before finding one that didn't make me nauseous. And remember they often take a few weeks to really kick in. I was urged by others on this forum to take them and resisted it for ages as I hate taking any medication. When I finally decided to take them - it was the best decision I could have made. They have really changed my life and I am not exaggerating. I was regularly having suicidal thoughts and spent a lot of time crying. I haven't cried or thought about suicide even once since I started them. Please, please ask her to seriously consider this.

The other thing is that I don't see why it's so hard to strengthen the psoas unless Anastasia is unable to do excercises because of the knee problem.

The following is from an internet site and there are loads similar:-
Psoas Stretch for Back Pain:-
Breathe in, then zip and hollow and press your lower spine into the ground. (This will tilt the pelvis so that it is looking "upward").
While breathing out, slowly stretch right leg out along the floor. Do not let you back arch! Stop at the point that you feel pain.
Breathe in, maintain zip and hollow.
While breathing out, slowly bring right leg back. Repeat twice each side.

Hang on in there and wish you luck to get into the rehab clinic - look great

Vicky