Decisions, decisions, decisions.........

[rosedee]

I haven’t posted for a long time partly because there has been such a lack of clarity in my situation. (Mark, I promise I will write my whole story down before too much longer!)

My ADR at L3/4 was a complete failure – absolutely no effect on my symptoms for better or worse, despite clear evidence that it was the appropriate treatment (or so it seemed then). No one could explain why I didn't even know anything had been done to my back - I only know I'd had the surgery because of the large incision at the front and the pictures of the device in my spine!

Prior to ADR my facet joints were described by my surgeon as: Mild arthritis/stage 1/2 .
After the surgery the surgeon wrote in his notes ?advanced facet arthritis. Despite having had a negative facet injection before the surgery he arranged another one, which was also negative. He then recommended a scintigraph, which found a “hot spot” on my L3 right pedicle. Infection and fracture have been excluded.

A recent CT scan in the UK has shown very clear advanced facet arthrosis, nearly bone on bone, with osteophytes and cysts (a marker of severity) on the right and degeneration on the left, though not as advanced. This, it was believed, would explain the hot spot and my continued severe pain (though not why the adr had no impact at all). This surgeon suggested that the previous negative results were probably due to poor penetration and he proposed doing it again, but under general anaesthetic. I had these over two weeks ago and, again, no effect.

Trying to understand all this a few days later, I had one of those moments when something clicks into place (not my back, sadly). Prior to my fusion 10 years ago, I was diagnosed as having Ehlers Danlos Syndrome by a professor specialising in this heritable disorder of the connective tissue. I am very clearly at the mild end of the spectrum, which means other doctors are usually fairly dismissive about its relevance, as I do not present with the extreme symptoms that usually identify it. Shortly after I was diagnosed, I discovered that one of its features is an insensitivity to dental local anaesthetics. I have had problems with these all my life, needing multiple injections for a tooth and sometimes not being able to be anaesthetised at all. As I have a lot of dental problems this has happened on numerous occasions (in the past I was disbelieved/ called a coward by various dentists. Fortunately I now have an excellent dentist who has been very interested in reading up on the dental aspects of EDS). So, it occurred to me that perhaps it also effected other local anaesthetics, even though I had not previously seen mention of this……..it does! So all the negative findings from local anaesthetics in my back over the years have been diagnostically irrelevant, probably!

I wrote to my current doctor about this and although he had not previously heard of this phenomenon, he found some references to it (there are, in fact, only 3 papers about it) and sees it as very relevant to my diagnosis. I went back to see him on Friday to review my situation. The EDS means that the negative effect of the local anaesthetic cannot be taken as diagnostic and there is no other possible diagnostic test. He thinks the circumstantial evidence (CT scan and hot spot particularly) mean that the probability of the facet joints being the source is high. This leaves me with 3 options:
1. Do nothing. There is a possibility of autofusion at some stage, but is not possible to predict and therefore it doesn’t make sense to base a decision on this.
2. Fuse L3/4, which he sees as completing the process started by the ADR. It would be a posterior extension of the lower fusion. He said that despite the degeneration at the higher levels, the fact that L3/4 doesn’t have a lot of movement in it (despite new disc) means that the likelihood of higher “domino” problems is reduced.
3. Go for facet replacement – there are 3 types currently being trialled and he is consulting on the one which he thinks would be best for me. I wouldn’t be accepted for the trial itself as I don’t have a nice neat history. His view is that the worst outcome from this would be that it did not “work” and it would then be straightforward to fuse.

So, I now have to do more research into facet replacement and make another decision. At the moment I have absolutely no idea what I’ll do. I can’t bear the thought of more (a 4th) surgery, but on the other hand, my life is so restricted by my current problems.………..

[mmglobal]

Has impingement of the facets above the fusion by the posterior hardware been ruled out?

[rosedee]

Yes, the hardware has been ruled out of the picture.

[dshobbies]

Rosedee,

I'm sorry you find yourself at such a crossroads. You don't want another surgery but don't want to live in constant pain either. I'm curious, have you discussed all of this with Dr. Z and what are his comments?

[rosedee]

Thank you for your post, Dale.

No, I haven't been in touch with Dr Z yet. His last view was what Mark was referring to that perhaps the rod from the fusion was irritating the facet. My experiences of trying to speak to Dr Z in the past (waiting nearly 3 months on 2 occasions, despite him saying he would phone me) make me reluctant to contact him. I appreciate he's incredibly busy, but the frustration and stress involved when someone says they'll do something and then leaves you hanging......... On the other hand, I think it's probably important to let him know about this at some point. I think maybe I need to wait until I have processed more the fact that having the ADR done was probably a big mistake.

[Roblin]

Dear Rosedee,
I just want to say how sorry I am for what you are going through! I can empathize with you because I too have a 2 level ProDisc failure and needing a 7th spinal surgery to remove them and fix another level. I understand the frustration with being in pain and waiting on doctors to give answers that never call back. It is an awful place to be in. I understand being afraid that maybe there isn't a fix and the fear of having to live in pain. I just want to let you know that I pray that you will find an answer and a solution to your problem. You are not alone!
Roblin