Spine op or hip replacement

Hi Lynn,

first and foremost I am a bit concerned that you have a neurosurgeon who is unable to make a diagnosis on where the bulk of your pain is coming from, it's his job after all and the inability to decide whether this is mechanical pain as you get from arthritic hips or nerve pain as you will tend to get from stenosis is a real concern. Personally I'd walk away from this surgeon, the indecision is akin to a dentist not knowing what tooth to pull.

I have Rheumatoid Disease and due to associated avascular necrosis I had my right hip replaced back in 2001, the pain I had back then was pretty bad to the point where I was hospitalised for three weeks to get the pain under control and make a decision on having the hip replaced, hip pain for me tended to be much more in the groin and buttock area but yes, one could say there was an element of "back pain" involved. A new hip resolved all these issues and I had seven years that were more or less pain free.

In 2008 I suffered what I thought was a small spinal injury, unfortunately it wasn't as straight forward as that and three spinal surgeries on, my quality of life is poor and I am in constant pain because of three failed spinal surgeries, it is all extremely complex as I have stenosis, anterolisthesis and a measure of spondylosis in the whole L1-L5 area. The initial surgery was to rectify a disc bulge but in hindsight my conditions would have been far better left alone and treated medically not surgically.

My advice is straight forward, get a second opinion to drill down and get to the root cause of your pain, pain from the hips and pain from the spine are quite different, actually radically different. Even the weakness you are experiencing may not be related to the spine but could be due to the arthritic hips. Find a good orthopaedic surgeon and have them look at your hips. Replacement hip surgery is trust me, a far safer option than meddling with your spine, surgical intervention to the spine can have devastating results so tread carefully when considering this as an option.

Despite having quite severe Rheumatoid Disease for around 20 years, I had coped well with it and had maintained a full time and highly responsible job, within two years of the spinal surgeries, I was forced into early retirement due to he rapid decline in my health and 18 months on from retirement I struggle on a daily basis, it is only recently after kicking up a real fuss that I am now ron a path that will hopefully allow me to claw back some quality of life again.

Always, always consider spinal surgery very carefully and most definitely shy away from a clinician who cannot determine if your pain is coming from your hips or your spine.

Hope this helps you.

Daddyo

Thank you Daddyo fir your reply. You poor thing it seems that you have certainly been through the mill, I do hope you can get so e quality of life back. I I have been reading about the spine operation and it does seem that no one seems to have anything good to say about it. I do have osteoarthritis everywhere , but my problems seems when resting I dont have any pain but try walking and that's a different matter, can go so far then my legs just feel like they are not holding me up, also can not stand for more than a minute. I have stenosis in the top of my spine as well. I am under the same impression as you that they should know were the pain is coming from but he said that hip problems mimic the spine pain. Think I would rather have the hips done and take it from there, do you agree. The hip Dr is sending me for a scan he says that will determine where the pain is coming from, have you heard of this?

I know you said that you would have preferred to have treated your back pain medically rather than surgical but all the tablets I have ever taken and I have tried them all just never worked.

What are they going to do for you now?

Hi Lynn,

making these kind of decisions is very, very difficult, no question there. Where are you based, I am in the UK (Scotland) so rely upon our National Heath Service and in truth they have been fantastic, in part due to having an excellent GP who is prepared to work with me rather than dictate what is to happen.

It still concerns me that your neurosurgeon has made comments regarding hip pain mimicking pain coming from the spine, it may do to a degree but X-Rays and scans, be they MRI or CAT should be able to give a much more definitive picture of what is going on, it also needs your hip, (Orthopaedic?) doctor and neurosurgeon to be talking to each other.

This happens all to often, various doctors and surgeons do their own thing in isolation because it satisfies their agenda, rather than look at you as a whole individual i.e. holistically, there may well be elements of the spine making the pain from the hips worse and creating your back pain.

I hope that the pain can be pinned down to your hips, replacements can prove life changing, more importantly though I would dump the neurosurgeon and get one, if required, that can make some definitive decision on where the pain is coming from, from what you say the neurosurgeon you have is quite indecisive and relly no use to you.

I know where you are coming from regarding medication, as things stand I am on 3600mg of Gabapentin to try and tackle the nerve pain plus Oramorph and a couple of other high level pain killers but they do virtually nothing for me.

In some respects I am like yourself, I struggle to stand for any time at all and walking a few feet brings on intense pain, this is unfortunately for me all remnants from the surgeries, I am attending the pain clinic, the purpose of this is to simply train me to live with the pain. There is also physiotherapy and hydrotherapy on the horizon.

I do hope you can find some relief from all your pain, in this day and age you would think they could come up with something.

I do not fancy having the nuclear scan, I dread to think of what effect this is having on my body, I am going to speak to my neurosurgeon next week he is on holiday at holiday at the moment.

I live in the French alps, and my neurosurgeon is a 4 hour drive away and my orthopedic surgeon is over 2 hours drive away, I do think the French system is all in all very very good, you get your results there and then and you keep all your own things, I rang yesterday for the appointment for the scan and go on the 18 th February, so no waiting like in the UK. I don't think I will have the spine surgery, but will have a serious talk with the surgeon, they are all very approachable here and dont seem to laud it over you at the end of the day everything is down to us.

Will let you know how I get on, it's so nice to talk to someone who is in the same boat.

Hope you get some relief soon.

Hello again Lynn,

with the exception of my spinal surgeries, carried out with a surgeon with an ego bigger than his looking after his patients and passing little or no information to his patient, the NHS here is very good. Sure we have the waiting lists but when the chips are down you will as a rule be seen very quickly.

My Rheumatology team very much believe in the holistic approach and always consider and explain the potential repercussions of any treatments offered, should I decide not to go down a specific route, then that choice is respected. Many of the drugs used for the treatment of Rheumatoid Disease are very powerful, some are used in the treatment of cancers, so we deal with the risks daily.

I think you may be getting some of the scans mixed up though, MRI and CAT scans are really no more than complex and advanced X-Rays, the "Nuclear scan" you refer to I think may be the PET scan, generally used to locate cancers and even then, very low risk because the radioactivity is a very low dose isotope injection effectively this is a highlighter for the scanner to pick up. Indeed I had a Gamma scan a number of years back to look at active inflammation in my joints, a small radio active isotope was injected into me, I came back a few hours later and had the scan carried out, absolutely no ill effects whatsoever simply because the dose was so small, probably smaller than I would be subjected to if I were to live in Aberdeen, 'The Granite City' Granite constantly giving off radiation.

Anyway, hopefully your medical team can perhaps get together for a proper chat and consider your immediate needs, that is to get some relief from your pain, I hope this can be achieved by the hip replacements rather than the spinal surgery route.

Keep in touch and let us all know how this goes for you.

Good luck.

Daddyo

Well had the nuclear scan, which showed up lots of inflammation of my spine, probably the arthritis and stenosis, it also showed the hip and knee arthritis. The orthopaedic surgeon said he would prefer me to have the spine surgery first as that showed to be the most painful, he would then do the hip.

I have read so much on the net about Spine surgery not helping and even making things worse, I saw the orthopedic surgeon on Monday and have an appointment with the neurosurgeon on Friday. My dilemma is I don't have much quality of life at the moment but if I sit and don't much all day my pain is ok, I cant walk far or stand for more than a couple of mins at the most. I don't want to do something tbat is going to make things worse. Are there any positive people out there that surgery has been successful?

The neurosurgeon says we will have you walking before you go to Florida in June.

I am getting really scared now.

Lynn,

I am in the USA, I had the surgery for spinal stenosis. I can't recommend it enough. All do my debilitating sciatic pain. I took no opiates after surgery because I did not need them. I took off running after surgery. I highly recommend this surgery.  However, 4 weeks after this surgery I found out that I need hip replacement because of avascular necrosis.  I can't wait for that surgery. My mother had both hips replaced before age 45 for this reason and she said ithe surgery was wonderful, all the pain she had before surgery was gone. Her life returned to normal after her recovery period. I am very much looking forward to having my life back.