Active L at L3/4 has had no effect – ideas please?

[rosedee]

12 days ago I had ADR of Active L at L3/4 by Dr Zeegers at Alphaklinik. If it wasn’t for the fact that I have seen the pictures of it and have a large stomach incision, I wouldn’t know I’d had it done! Literally no effect whatsoever….which makes absolutely no sense, given what surgery involves. The level of pain and impaired mobility were evident immediately I got up in recovery room, with Dr Zeegers there. He has described it as a “nightmare” and is unsure what to make of it/suggest. Technically the surgery went perfectly and he can’t believe it. He said he hasn’t had an outcome like this before – no improvement, no deterioration, no nothing…….. I have to say that his response of wanting to determine why this had happened and what is really going on with my back is reassuring and unlike anything I’ve ever had in UK. 90 minute follow-up with surgeon?!

We agreed I would try facet injections at L3/4 (which had been negative in May) and at L1/2 (which had been positive at discogram too, but is too high to a/c for the degree of pain lower down). These were done on Monday and today and have had no noticeable effect, which at least reconfirms that the pain is not coming from them.

Dr Zeegers had always said that I was very difficult to diagnose because of my long history and previous surgeries and symptoms, but agreed with other surgeons that L3/4 was the central pain generator. He had suggested Micro surgery/abrasion at L1/2 could be a backup plan, but Dr Hoogland here has said that he doesn’t think it would have a significant effect and is not worth trying. A neurology assessment with Dr Baumbach in June had indicated additional problems at C5/6, C6/7 and thought it was the interaction between neck and lumbar problems that accounted for the degree of pain and impairment. Dr Zeegers does not see how cervical problems could account for my lower back problems in the light of the failure of the ADR to do anything.

Last week Dr Z suggested that it may be worth considering removing the metalwork from my previous fusion surgery – this had originally been suggested in London by one surgeon (disagreed with by 2 others), but previously Dr Zeegers had said this would be a big mistake given nothing obviously amiss with it and that there is no evidence of bony fusion on CT scan. He is now saying that, ”maybe pedicle wall failure L4 right side: screw L4-5 probably perforating pedicle right side, both screws very medially located, relatively big screw-diameter in relation to pedicle.” Dr Hoogland has said he doesn’t think it is worth removing metal work.

Anyway, I am due to see Dr Zeegers again on Thursday to review the (lack of) effect of the facet injections and think more about what to do next (if anything).

My return flight to UK is booked for Saturday, so unless anything emerges on Thursday, this will be my last meeting with him.

If anyone has any thoughts/ideas about all this I would be very appreciative of them, particularly before Thursday if possible.

[dshobbies]

Rosedee,

I am so sorry you find yourself with the same pain level as prior to your surgery. I know how you put such hope into finding a solution, only to find it completely ineffective.

My only comfort to you is that you are in the best hands possible. Perhaps you can consult with Dr. Baumbach before you leave too. From what I've read, he is a miracle worker.

I sincerely hope your doctors find a solution and your pain finally begins to lessen. You've been through so much, what you want shouldn't be unrealistic.

My thoughts are with you,
Dale

[mmglobal]

Rosedee... I'm so glad that we connected yesterday. I'm looking forward to hearing more about your meetings today... I hope that our discussion was useful and that my questions bear some fruit. All the best... postitive vibes out from Austin!
Mark

[teg]

Rosedee
I am sorry to hear about to hear about your continued suffering. After my ADR I could feel relief from what I would describe as compression. It took about 4 after my L3,4,5 ADR b4 I was pain free in my lower back.

All the best.
Thelma

[rosedee]

Mark, it was very helpful to talk with you the other evening¬ and it meant I felt much better prepared for my meeting with Dr Zeegers.

Thanks for your post Thelma.

I spent about an hour with Dr Z and we again went through different possibilities to explain the outcome of the surgery. It remains unclear why a technically pefect surgery that was the treatment of choice for the severe presenting problem, with an unquestionably positive discogram has left me not knowing I have had back surgery. He is now wondering whether the problem is with my previous fusion - whether maybe one of the screws has worked loose, or whether the bone never fused, either of which could result in continued movement in the area. The only diagnostic to establish this, apparently, is a Bone Scintigraphy. (I asked about the possibility of an anaesthetic injection of some sort into the fusion area as a diagnostic, which you had raised, but apparently this is not feasible). As it would not be possible to arrange this before my return to UK on Saturday, I will leave as planned. I will then send the scans to him and discuss things further in a telephone consultation. He also suggested I could have more facet joint injections under CT guidance, which would be more accurate than X-ray guidance, though I am not entirely convinced by this. My sense is that this would be the most straightforward explanation for what has (not) happened and would have an obvious solution to try, but there is no real evidence to support it.

Everyone at the Alpha Klinik is telling me how sorry they are, how they have never heard of this before etc etc and I end up feeling a need to reassure them and make them feel better about it! It feels somewhat scary that one of the best and most experienced surgeons in the world is so baffled by what is going on and is not really sure what to suggest. Equally, it is reassuring that he seems committed to working with me to pursue a solution if one can be found. His genuine concern and sorrow is supportive. There is no sense of him washing his hands of me, which is so often the case with surgeons when something hasn’t gone according to expectation/plan.

The thought of returning to London the same as I left is hard and I think the full impact of all this will hit when I am back in the home I have been pretty well housebound in for 2 ½ years. But it is time to go……………..

Just to end on a positive note, I am healing well from the surgery in terms of the incision and my "innards" – obviously there is still a lot of bruising and soreness etc but it is all going in the right direction.