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Lumbar Spinal Fusion / Disc Replacement - what spinal surgeon did you see?

(33 Posts)
PavlovtheCat Mon 03-Dec-12 14:05:38

So, for those who don't know, I have a torn/prolapsed lumbar disc, dehydrated and basically causing me no end of trouble. Furthermore, it may be that my spine is now 'unstable' due to the dehydration of the disc not fully supporting the spine and this is why my back 'goes' every few weeks, seemingly randomly.

To those who 'know' my back problem history <waves>.

Today, I have seen someone from the spinal pathway, for the second time, follow-up (that they forgot about til I insisted on a referral, he acted like it was always his intention\! but nevermind).

Outcome was:
*left calf is weaker than right calf, visibly so (muscle degeneration? and not able to stand on tippy toes etc) as well as other signs of numbness, pins and needles - suggests that the nerve may be trapped/pressed against.

*I am now a candidate for surgery, based on my age, my weight, my determination not let this fuck me up (my interpretation, he said 'my attitude), my pro-active stance of managing it so far, the symptoms, lack of success with other pain meds etc, etc.

So, MRI to be completed within 6 wks, then, depending on the outcome I will have a consultation with
a) neurosurgeon to discuss discectomy/partial discectomy
b) orthopaedic surgeon to discuss spinal fusion. Whereas before this guy attempted to persuade me away from surgery, he is now thinking I might benefit from it (not sure how much the fact that previously they had no spinal orthopedic surgeon at the hospital and now they do has to do with his change of mind)
c) both
d) full disc replacement discussion - means referral to another hospital and apparantly my GP has to do that hmm it seems a bit like wanting another surgeon's view is betrayal or competition!

So. Seeing as though I am allowed choice in all this. And because spinal surgery is such a delicate procedure, and so many medical professionals have different opinions about spinal fusion, I am seeking your recommendations, preferably in the South West but not essential:

*Has anyone had full disc replacement? was it successful? What surgeon performed the surgery and where? was it done on NHS or privately?

*Who did your discectomy or spinal fusion? private or on NHS? what was your outcome? What surgeon/hospital performed the surgery?

PavlovtheCat Mon 03-Dec-12 17:34:08

Bumping for the evening folk grin

denialandpanic Mon 03-Dec-12 17:47:32

this is going to sound odd when we're talking about spinal surgery but I'm really glad you are finally getting somewheregrin . unfortunately I know nothing about spinal surgery.

PavlovtheCat Mon 03-Dec-12 17:49:47

I know exactly what you mean! I told this guy at the spinal team I almost wanted surgery as I want this fixed. But, I know there are no guarantees and it has not been decided for sure yet.

Leverette Mon 03-Dec-12 18:01:41

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

PavlovtheCat Mon 03-Dec-12 18:06:45

Thank you, I will look him up. Bath is not far! And lovely!

bobblehead Mon 03-Dec-12 22:10:29

Not in UK so no help with sugeons/NHS but DH has similar issues and had a discectomy nearly 2 years ago which was no help. Have friend who is several years further down the line than we are and also found no relief from discectomy. We have heard no good about spinal fusion so dh is determined not to go that route. Aforementioned friend is saving money desperately for disc replacement as he feels that is the only hope for escaping his pain (and he has really done a lot of research!)
Good luck!

DeafLeopard Mon 03-Dec-12 22:17:06

I have had a few consultations with Nick Birch about a fusion, following a failed discectomy and a repeat op - he is based in Northants, and is the guy the other local orthos refer to when they can do no more.

Catper33 Mon 03-Dec-12 23:13:35

I am so glad you are getting somewhere and able to have a way forward. The advice I was given before my fusion surgery was to find out the method/approach the surgeons use as they don't all do things the same way and see which you feel is best for you. Find out about as many surgeons as feasable and see who you feel is 'right' for you and does things the way you want them done.

Friends who I know that had a discectomy are now needing a fusion so whilst the initial surgery is less traumatic for your body there is the potential to need further procedures over time depending on your own circumstances. My fusion has been great- I am now 14 weeks post op and I am so glad I took this option. My situations sounds similar to yours with major lumbar disc issues and spinal instability- I was told by all the surgeons (in NZ) I spoke to that a fusion would be needed due to the unstable spinal structures to get the best long term results.

3 other friends of mine who had their fusions some time ago are able to do whatever crazy activities they want to with no problems. There are a lot of bad stories about fusions but there are also plenty of success stories too. It isn't something to be scared about but you need to research carefully to understand all the option/approaches available.

I can't particularly help with Surgeons in the South West, although a family member who lives near Exeter saw a really good physio (privately) specialising in backs who would be knowledgable about who exists. I can find out more info if that would help.

MsElleTow Tue 04-Dec-12 11:05:46

Pavlov I see Michael Grevitt at the Queens Medical Centre in Nottingham. There was an article in the Daily Mail(I knowwink) where they asked spinal surgeons around the country who they would want to operate on them and he came out top!

here he is excellent. I feel so safe in his hands.

mouldyironingboard Tue 04-Dec-12 14:58:22

In London/SE I saw Peter Dyson who is excellent. I couldn't have disc surgery due to another chronic condition, but I would have been happy for him to operate.

I agree with what catper33 says about spinal fusion.

PavlovtheCat Tue 04-Dec-12 20:09:29

bobble i am looking into the full disc replacement as an option too, as the spinal pathway guy said that if this did happen and was not successful, then spinal fusion could then be done after that. The only thing that makes me very nervous (for now, sure there will be more things as I research more!) is that it is completed abdominally, and has risks of causing damage to stomach/nerves in that area. I need to read more.

catper I have been told that I may need to have both discectomy and spinal fusion as I have two factors with my back 1) the disc may be trapping the sciatic nerve (after all!) and 2) the dehydrated disc has created unstable vertebrae which is only really fixable by fusion/disc replacement. So, even if the discectomy is successful it may only fix half the problem. I am glad you are feeling so good after 14 weeks. I hope that continues for you and you get to do some crazy things too! That would be really useful if you could pass me the physio's name.

I am still not 100% sure surgery is the best option as I now feel rather nervous about it! But, it is not a decision I have to make now, it is one I want to explore as fully as I possibly can, all the options and as you say, style of surgery performed needs to be considered. I will not just go along and say yeah sure, whatever.

But I do know, I simply cannot carry on like I currently am for the long term, so I must give this my most serious consideration and not shy away from it for the wrong reasons such as nerves. Which is why I will explore different surgeons. I know there is a risk. but, we have to take risks in life, and right now, it is not much of a life, so I am also risking getting my life back if I get it done properly.

Thanks to everyone for your recommendations, I am going to read up about them all and maybe talk to their secretaries for a little more information (i am creating a spreadsheet! grin)

thereinmadnesslies Tue 04-Dec-12 20:52:46

My mother had similar surgery to this at the Royal National Orthopedic Hospital in Stanmore. It went horribly wrong and she is now paraplegic. Please be very cautious about being referred there. While the consultants are overstretched but good, the nursing aftercare was poor and the hospital is falling apart.

PavlovtheCat Tue 04-Dec-12 22:14:04

thank you there it is useful to know where to avoid as well as where to consider. I am sorry to hear about your mum's surgery going so badly wrong sad

Catper33 Tue 04-Dec-12 23:36:44

I was petrified of the surgery (had PLIF) and was trying to convince myself and anyone who would listen I didn't need it. Deep down I knew I had to do it if I wanted anything to change. It has been hard but the recovery is part of a process where you can see there is light at the end of the tunnel rather than being stuck in that dark tunnel with no way out.
I am back on my mountain bike, not going far, and am about to start rock climbing again- just been too busy to go in the last week or so to have gone already.
Have e-mailed my family re: physio. He works privately but is also the physio for Professional Sports Teams may be Cricket and Rugby.
Take Care and 'Spreadsheets' LOL that was me to much to everyone elses amusement!!!!!!

Catper33 Wed 05-Dec-12 00:02:49

The physio practice is Ocean Physio and Rehab based in Woodbury,Exeter and Andy Lamour is the specific physio my Mum saw. Nearly right with the sports though its the English Golf team and County Cricket teams. There website indicates they have an Orthapaedic Consultant there too who only deals with spinal surgery. My Mum said the Physio was great for her when her back was a problem.

PavlovtheCat Wed 05-Dec-12 09:01:42

catper thank you for those details. I might go and see him, I don't mind having to pay a little bit privately to get good advice for the long term goals if that is what I have to do, this is seriousness enough that I can't just jump in and I am lucky enough that I can probably afford a couple of sessions. The physio I had so far has been great when seen by the senior physio (also called Andy!) who got me walking straight from a stooped position, but the usual physio just got me doing pelvic floor exercises. Like I don't already do those with two children grin. If I can learn some better techniques in the meantime it certainly won't hurt.

I had a look at the daily mail recommended list of surgeons and there is one in Exeter. I think Exeter has a better reputation for spinal surgery, certainly more long-standing, as this surgeon in Derriford (my local) he is new, and prior to him arriving, they were much more anti-spinal fusion. That in itself makes me nervous, as I want the hospital philosophy to support the surgeon if that make sense. But, he might be good. I am researching him too and won't rule him out.

In terms of spinal fusion, what are the techniques that I need to be aware of? I have heard there is a newer technique which involves reduced metal being used, a simpler process but that not all surgeons follow that procedure. Anything else I need to be aware of?

PavlovtheCat Wed 05-Dec-12 09:04:06

and I think that is the attitude the spinal assessment guy I saw was talking about, that he said the recover process after surgery is just as important for it's success as the surgery itself and if the attitude is not right before surgery and the outcome expectations unrealistic it is less likely to work. He said my approach to self management has played a large role in him thinking that surgery could be beneficial to me and be successful, as much as the symptoms themselves.

MsElleTow Wed 05-Dec-12 13:24:00

Pavlov if you don't mind travelling I really do recommend Mr Grevitt. He travels and teaches all around the world. He is held in very high regard. If you Google him, there are pages and pages of articles about him. The type of SI joint fusion I had, he pioneered.
I know Nottingham is one of the to spinal units in the Country. It is where the RAF send the pilots when they have ejected from jets.

PavlovtheCat Wed 05-Dec-12 22:14:49

ms I have no problem travelling in order to get the best treatment I can access. Not at all. I have time to plan. I guess the question is whether I am able to access the treatment on the NHS outside of my area. I know that allegedly I have 'patient choice' but not sure how realistic that is in practice. I am going to research him thoroughly with the others too. I want pioneers, I want someone who is not going through the motions, but is prepared to invest in me, because I am worth it, because it is possible, because they are not prepared to let me sit and disintegrate into nothing. I don't want a surgeon who is just doing it because I am on his list.

PavlovtheCat Wed 05-Dec-12 22:17:11

and you know, his initial consultation fee is £150 or so. If I chose 3 spinal surgeons who I felt I wanted to talk to about all this, I would be happy to pay that 3 times over to get a good handle on it, and then back in through NHS route with their guidance. I know others who have gone private with their MRI results and had a chat, been rerouted back to those surgeons via the NHS route (some urgent as first opinion was shit, and others, on the normal waiting list).

Catper33 Thu 06-Dec-12 01:14:36

I understand what you mean about 'pioneers' but be careful. I spoke to some surgeons who fit this description but felt that they would be using me to 'prove or obtain' their data/research rather than be doing something in what has already been 'proved' as being the most effective way for my circumstances. I suppose I didn't want to be part of an 'experiment' however good it appeared to be when other proven methods with statistical and on going data to support the documented success rates existed.

Pyrrah Thu 06-Dec-12 12:29:03

I see Adrian Casey at the RNOH and had my surgery done at Stanmore, but consultations in Bolsover St.

Unlike the earlier poster, I cannot say enough good things about the care that I had there. The staff were lovely, they handed out painkillers willingly and on time (unlike most hospitals) - heck, even the food was nice. The wards are a bit WWII hut-like, possibly because that is what they are, and the slope down the hill to the operating theatres is somewhat scary, but otherwise it's fine.

My mother had a fusion done by him a few years later - also at Stanmore and was very pleased with the results, and the care.

I would chose a spinal neurosurgeon over an orthopaedic surgeon every time.

I had a laminectomy and discetomy in my early 30's for spinal stenosis and herniated discs. I was told in advance that 100% pain-free was not going to be possible, but we would aim for 60-40%. I got the 60% and it was life changing.

I will need a fusion or artificial disc later on, but they won't operate again till I'm over 50 unless something changes. I just take a large cocktail of drugs in the meantime.

Pyrrah Thu 06-Dec-12 12:31:32

Regarding disc replacement, Mr Casey was/is the first purely spinal surgeon in the UK and an expert in artificial discs.

PavlovtheCat Thu 06-Dec-12 12:45:17

pyrah I have been told that spinal fusion would be orthopaedic surgeon and disc/nerve related is neurosurgeon. I am sure I get to chose which one? Isn't it to do with what is required?

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