Active L at L3/4 has 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 the 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.

Many thanks

[Terry]

Rosedee:

I'm surprised that the surgeon and you are looking at this surgery like it was a failure after only 12 days. You have had a major surgery with a large opening in the front to install this disc after some significant prep work. My humble opinion is that you've got some healing to do before you can make this determination. I am almost at a year and still have some healing pains going on. Injections that I have had were not immediately felt by me to have had any impact until a week and a half later. I have then gotten a couple of months of relief out of the injections. I am scheduled for a third set this Thursday and will consider nerve ablation if the results only last a couple of months.

I hope you give it time to see if this is just normal healing going on with you.

Hang in there.

Terry Newton

[rosedee]

Hi Terry,

I fully understand what you're saying and agree with the sense of it. Having had 2 spinal surgeries before this, I went in knowing that however I felt immediately afterwards it could be up to a year or even 2 before things had fully settled down from the surgery and an overal evaluation could be made. This is a very different situation.

The issue here is that while it is evident that my front needs its healing time and I know/feel that something major has been done to it, there is no sense of that with my back. And it is this that doesn't make sense - all the prep work necessary for the disc installation etc should have produced some feeling, whatever it is. And there is absolutely nothing different there - no soreness, no bruising, no aching, no nothing (only the exact same level and type of pain that led to the surgery). All these very normal responses to an assault/surgery on the body are present in my stomach, but my back has nothing. It is this we are seeking to understand.

Best wishes to you
rosedee

[tmont]

Rosedee,

No advice to give here, only support and a prayer that they'll find out what's up soon--and how to fix it--at the AK. Sorry you're going through this; keep us informed.

Trace

[rosedee]

Thanks Trace, I appreciate your reply.

When I met with Dr Zeegers yesterday, we again went through possible options. 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. 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. And his genuine concern 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 with my back exactly the same as when 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…………….

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.

[Alastair]

HI Rosedee,
It sounds a mystery which is unusual for the AK and Dr Z.

They have the worlds finest scanners etc - -- usually you feel some improvement after your surgery, I did straight away. Might it be a trapped nerve. If possible I would have stayed for those few days and had the extra investigations done there.

However we all know there are no guarentees with any surgery. I can only hope and pray that this starts to pick up for you soon. Its "Early days"
Best
Alastair

[sharman]

For what it's worth, I met a fusion patient who had a lot of pain relief getting the hardware removed. I believe another source of her pain was disc fragments, which were successfully removed endoscopically, for additional improvement. Good luck

[rosedee]

Thanks Alastair and Sharman.

Alpha Klinik does not do scintigraphy, so would have been somewhere else in Munich. Dr Z did not think there was any advantage to me staying longer in Munich at the present time, particularly as is he is not here next week anyway.

[berry]

Rosedee

I don't really know what to say, but I am sorry that you have been through the surgery and not yet had any benefit.

I hope your journey home isn't too uncomfortable, it takes a lot of courage to go abroad for surgery and you must be so disappointed at the current outcome.

Please keep us updated on how things progress.

Wishing you some improvement very soon.

Best wishes

Lynda

[Harrison]

Rosedee, sorry about the news. Did you happen to find pain relief with any meds -- before or after surgery -- that helped? E.g., did you cycle through various anti-inflammatories that may have quelled the pain? NSAIDs like ibuprofen, Celebrex, etc. can tamp down the inflammation, sometimes relieving the pain. As well, this method can be somewhat of a diagnostic too...