Never give up hope!

[vickyjoseph]

Hi everyone,

I have never posted here before as I live in the UK and we now have our own ADR site. However I used to be a frequent visitor to the USA ADR Support forum until I somehow got locked out. Also I wasn't making the kind of recovery I had expected or hoped for and was finding it increasingly depressing to read about other people playing football etc 6 weeks post-surgery.

Yesterday I was surfing the net, decided to 'pop into' ADR Support and somehow managed to post a message. Mark picked it up and asked me to post it here - so (with one or two changes) here goes.....

I hope my story will help some of you guys having a slow recovery.

After 5 years of chronic, severe, disabling LBP with no diagnosis, in spite of 4 MRI scans and a host of other diagnostic procedures, I heard about the Alpha Clininc in Munich and finally was diagnosed with multiple ruptures to L5 S1.

I was ecstatic to finally get a diagnosis and, through ignorance, not at all afraid of the surgery! I was so desperate to get rid of the pain that had taken me to the verge of suicide. In September 2005 (over 18 months ago) I had one level ADR surgery (ActivL) with Dr Zeegers.

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 impossible for 2 years, 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. I was a good candidate - 'only' one ruptured disc, good bone density, slim, previously athletic, 51 years old and in otherwise good health - apart from the ubiquitous depression.

By last summer - 10 months or so post surgery, I was back in the depths of despair, convinced it hadn't really worked and there had to be something else 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'd 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. What I liked about his unusual set up is that he works closely with a team of medics including a pain specialist, an osteopath, a podiatrist and several physiotherapists. 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. This is what I was hoping for and he agreed that I should attend.

It was very informal and I sat in the middle of this group of medics who had already examined my pre and post surgery scans and X-rays. They fired questions at me, looked at the way I stood and walked and 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 less 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 has really amazed me how much pain was caused by poor posture and muscle tightness and how much it's possible to reduce it with the right therapist, the determination to find one and the discipline to spend 30 to 40 boring minutes every day doing excercises. I sometimes even wonder if I shouldn't have rushed into ADR but there's no point in going down that road, it's done now.

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

Vicky

I'm unlikely to visit this site very often 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.

[mmglobal]

Vicky, this is such wonderful news. I've followed your story for so long. Some of the talks we've had have been so difficult because I know what it's like to still be in so much pain after surgery. (Remember that my successful surgery was my 3rd.) I have seen others with late recoveries such as yours and they come from a wide veriety of reasons.

You mentioned cutting pain meds in 1/2. Can you describe a transition in your depression level? Did your depression decrease before the pain, with the pain, or after the pain decreased?

I'd like to learn more about the postural issues... I do know several people with unexplained failures. This is very exciting stuff for quite a few people I know. My guess is that you'll be hearing from more than a few.

All the best... let's talk soon.

Mark

[vickyjoseph]

Thanks for your kind reply Mark. I'll try to answer your questions although it's hard to describe postural issues with words!

But first re. your question about pain meds and depression. I reluctantly went back onto antidepressants, having been off them for about 2 years and I'd say that both my depression and my pain decreased shortly after. It's hard to say which influenced which, if at all.

The drug I was prescribed is a newish med called Duloxetine (the trade name in the UK is Cymbalta) and it is used for pain from diabetic neuropathy as well as for depression, which is why my psychiatrist gave it to me although my pain does not appear to be neuropathic! The improvement in pain wasn't dramatic but the improvement in depression certainly was.

I am now taking a cocktail of 1 tramadol, 1 solpadeine max (both analgesics) and 1 clonazapam (muscle relaxant) twice a day. Before Christmas I was taking 6 tramadol, 3 solapdeine and 3 clonazapam. So way to go still. I am still on the anti-depressants and have no intention of coming of any time soon. For people in the USA there may be a cost issue. Cymbalta is an expensive drug (approx £1 a day here) but we have the NHS, which, with all it's faults, still means I only pay £7 for 2 months supply.

Re the postural issues... as I said it's hard to explain but I'll try. I'm quite tall and as a child was self-conscious about my height so always had a tendency to slump and round my shoulders. (Over the years I saw at least a dozen osteopaths, chiropracters, physios, Alexander, Pilates and yoga teachers and none of them picked up that my posture could be a cause of the remaining pain.) My tendency was to slump back, sticking my chest out or to over-correct this position by stcking my butt out and pulling my shoulders back, both position over curving the lower back and putting pressure on it.

The other issue is that I had been to Pilates and Keiser Training and back strengthening excercise over the 'pain years' and no one told me I was making a serious basic mistake. When I was told to pull in my stomach, I was pulling in the upper abdominal muscles instead of the lower abdominal muscles. This meant my upper abs were very strong and tight and consequently so were my lower back muscles. The large muscles in the lower back were so strong (and hard and tight) and were doing the work that the smaller muscles all along the spine should be doing. These paraspinal muscles were not doing their job at all. Also my gluteal muscles had slightly atrophied and when I walked I tended to twist my pelvis - I couldn't separate my pelvis from my legs. I imagine there were/are other subtle problems too, that only a trained phsyiotherapist would understand.

So very, very gradually, through a series of graded excercise, I've learned to let go of the upper abdominals (not easy) and consequently to let go of the big lower back muscles too. The 'correct' muscles have slowly begun to wake up and kick in, my gluteal muscles have began to work and I can lie on my back and lift my legs without moving my pelvis or hips, just using the pelvic floor mucles, gluteal muscles and lower abdominal muscles. I've also learned to stand with my hips directly below my shoulders and not several inches in front of them.

I still have a long way to go - these things just cannot happen quickly, especially after a lifetime of bad habits. You have to reach the stage when you no longer have to think about how you are standing or walking; when it feels natural, and this takes time. But this programme has given me renewed hope that I can reduce my pain still further. it seems a great shame to me that surgeons rarely think outside of their surgical box. They often regard phsyiotherapists as inferior beings whn in my experience they are often absolutely vital to recovery.

I'd be happy to answer any questions but would prefer if people email me directly as I don't check in here that regularly.

Good luck to all pre and post ADRers

Vicky

Al

[mmglobal]

Vicky, you should be getting email from a client of mine. She read your post and says that you are very, very similar. It's amazing how important it can be to share our experiences... lives are saved. Thank you!!!

The which came first, the depression relief or the pain relief is a very interesting question. About 2 weeks after I started on antidepressants, I noticed a substantial difference in my mood. About 5 weeks after I started, I noticed a substantial difference in my pain. It wasn't that my pain was less... it was that it didn't bother me as much. The depression defeats your coping mechanisms and smaller amounts of pain represent larger amounts of disability. When your coping mechanisms are restored, it's like the pain is less... even if it really isn't.

I've heard a lot of great stories this week and yours is absolutely wonderful. I'm so very happy for you.... please keep it up!

All the best,

Mark

PS... did you see my granddaughter!!! www.mintzer.org/zoey

[vickyjoseph]

Hi Mark

First - many, many congratulations on the birth of your grandaughter. It must be so exciting and I wish you and your family much joy from her. And I hope it will happen to me someday. Right now 3 kids in their 20s and not a partner between them!

Secondly - I just want to say that thanks are not necessary - if I can help even one person avoid going through what I went through it will have been worth posting my message and getting re-involved with these ADR websites.

I've had several responses already and have of course answered them. The most distressing one was from Anastasia - her husband generally posts for her as Matt4Ana on the ADR board. I've tried unsuccessfully to find their email address in the hope that you might be able to offer some help. Please read their posts and if you have any suggestions I will suggest they get in touch with you.

Take care Mark and thanks for your support.

Vicky