I was sent to see a spinal surgeon by rheumatology as my MRI showed rheumatoid changes at the top of my neck plus other changes. How can I respect someone whose first words were “ the rheumatologist seems to think you need surgery but I do not” When I asked about what pain medication might be best I was told “ if you have chronic pain then you should not be taking any pain killers. They do not do you any good” ! Sent away for physio
What a waste of my time
What a waste of space he was. I would ask for a second opinion. xxx
But isn’t that good that you don’t need surgery? Rheumies aren’t surgeons so that’s why they sent you to one,his experience and knowledge formed his opinion and I would respect that. Hopefully the physio will help your pain, if not then I’d go back to you doctors but do give physio a good try 😊
Believe me surgeons are not renowned for their people skills...having checked your MRI he was probably just telling the truth....if a bit unsympathetically.
I have had surgery on my cervical spine & although mine was very successful I would have welcomed the thought that physio could help.Unfortunately mine was necessitated by an accident & I was in hospital within days of my surgeon seeing my scans,
Let’s hope physios helps...if not I’m sure the surgeon will see you again for further advice.
He was right that he couldn't help! You tend to forget that there are people who may be good technically but have no skills talking to people. It's upsetting when it happens, but good to hear that he doesn't think that surgery is indicated - I'm sure he would have been delighted to do it if it was!
Definitely that is called second opinion time. Just to be sure. It would be good news for surgery not to be necessary however better to catch it sooner rather than later.
So sorry to hear that the spinal surgeon was so blunt....sadly to say they sometimes forget that we are human and a little regard wouldn't go a miss when it comes to people skills. Take care x
I've had rheumatologists refer me to surgeons - foot surgeon was the most recent. Rheumatologist said I could have an injection into my achilles tendon to alleviate pain and an ankle replacement.
Surgeon ordered an ankle MRI but refused injection, said it's not possible to inject tendon, could cause more damage and I'm too young for ankle surgery as the replacements only last about 10 years. That was all a waste of time.
I was also referred to pain clinic for back pain - can't remember specific name, but basically bony spurs pushing both ways aggravating nerves. Pain Clinic had a seminar/group session explaining pain killers are only 30% effective and if they are effective the efficacy can wear off after time and its better to try other ways to manage pain.
I think rheumatologists are limited as to what they can do. Unless someone is at risk of paralysis or death, spinal surgery is a last resort. I had cervical decompression laminoplasty and fixation C3-C6 in 2002. Life saver.
Hi
Trust your surgeon. I had c1 c2 fusion 5 years ago. The spinal surgeon felt it was not necessary at this point but I was in a lot of pain. Rheumatologist felt I needed surgery so I asked for a second opinion. I went to john radcliffe and so what I thought was someone with experience in this kind of operation and who reassured me he had done this operation many times. Unfortunately as a result of his lack of knowledge and experience I ended up with a stroke and screws left going through vertebral arteries on both right and left arteries.as a result I sued. How I would do it again would be to listen to your neurosurgeon and although he may have no people skills they are generally excellent at their job. I wish I had listened.i am fine now but left with 2 screws in the wrong place.
You had a rough ride. My neurosurgeon didn't give me a choice, it was surgery or risk of paralysis or death. Everything went fine.
hi Magliona
My goodness, what a nightmare . I too had a C1/C2 trans lateral mass screw fixation in 2009 for atlanto-axial instability/subluxation. It's a horrible op, and that's without your awful complications. Did your surgeon do lots of scans (MRI & CT) beforehand to check on things like where your arteries were, etc? My op thankfully went relatively smoothly except for the fact I haemorrhaged and they had problems controlling it so the op lasted a few hours longer than expected and my arms were black from elbow to wrist as they couldn't find veins to get blood in! At least I was unaware of all that! Amazingly, the neuro-surgeon I had actually happened to be very nice and had an interest in 'rheumatoid necks'. Think I got very lucky there!
I had practically no symptoms though. My neck was considered very loose and unsafe and that I was at risk of spinal cord compression, paralysis etc, but it was really hard to believe as I was ok - not really any pain and my neck moved very well (which I now realise was a little too well)! What sort of pain were you experiencing?
Unfortunately, since the op my neck is so much more uncomfortable, and for the past year I've been getting a lot of pain, stiffness, terrible grinding and a kind of funny jolting. A plain x-ray has shown some subluxation now at C3/C4, so I'm waiting on a new MRI. Apparently this can happen a few years following a C1/2 fusion.
I hope you don't mind me responding to your reply. Obviously I know other people have the neck fusion op, but I hadn't come across anyone else yet!
Best Wishes 😊
A friend was told similar, but insisted on injection into tendon and it was disastrous. Only an anecdotal example, but I personally have taken this to heart.
... maybe I had a lucky escape!
I’d hate to tar all neurosurgeons with the same brush, but I’ve seen 3, and they were all like that. I warmed up to the main guy I was under over time, but it took about 2 years, and I came to the conclusion he shouldn’t be let near patients unless unconscious or they signed a waiver not to report some of the stuff he came out with. Acquired taste would be putting it mildly, and he had zero communication skills. He came to do my consent before my first brain op and without preamble went ‘risks, so, death, followed by the chance you’ll come out quadriplegic’. Yes, it was a possible risk to the op I was having, but he put the fear of everything into me with the way he said it. It’s worth remembering, though, that a high percentage of surgeons score as psychopaths, and the studies show that the proportion of neurosurgeons scoring as psychopaths is higher than many other specialties, so as a group they tend to be wired slightly differently, and I think it shows!! That’s not defending them, by the way, or saying that the way they sometimes speak to people is appropriate, just suggesting that there is at least an explanation for why they are the way they are.
With regards to the painkillers, from my own personal experience, I’d actually agree there’s significant truth in what he’s said. I have a congenital malformation of the skull and brain that leaves me with chronic headaches, neck and back pain, and my second surgical decompression for that also involved a laminectomy of my C1 and 2, meaning they shaved them to relieve pressure on my spine and to improve issues with csf flow, but somehow resulted in chronic shoulder pain. I then have chronic pain from nerve damage at the back of my head caused by the incisions for the two ops, suffer with occasional migraine, and a specific type of headache that I was initially, very bluntly told (by the same neurosurgeon) was completely impossible because it ‘only effects Asian women’. I’m not Asian, or female, but it was over a decade ago that he said it, and at the time, that’s what the research suggested. I’ve had every painkiller going, including neuropathic painkillers like pregabalin and gabapentin, been to the pain clinic and tried both nerve blocks and Botox injections, but the bottom line is that sometimes, as frustrating as it is, there’s simply nothing realistic that will help. I talk about realistic options, because morphine makes me feel great, but it only masks the pain, it doesn’t actually get rid, and aside from being addictive, it also quite significantly restricts my ability to be a functional human being. I’d have to surrender my driver’s license, and that’s also not getting into issues like rebound pain if you routinely take certain medications, or side effects and all the rest of it that complicate the long term use of painkillers. So, these days I take brufen for ‘normal’ headaches I know will likely respond, migraine meds as and when I can feel one brewing, but the rest I manage with mindfulness and knowing my limits. I’ve been in pain every day for over a decade, the only thing that varies is the source and the intensity, and whilst I freely admit it does suck sometimes, it is still entirely possible to live a meaningful life in spite of that if you can shift your mental perception.
Great answer, but sorry for what you’ve had to go through to be able to recount this history. Also agree that pain killers are not always an answer.
It’s definitely been an experience. Before finally getting a diagnosis and the surgery after becoming almost immobile, they told me it was all in my head. Of course, it absolutely was, just not in the way they meant 🤦♂️😂 But the good thing with all these different experiences we have is that we can try and help and support others also having a naff time - silver linings!
No doctors are specialists in all possible areas, so if the rheumatologist gives an opinion on something outside their specialism and the spinal surgeon, whose area that is, contradicts it, I would believe the spinal surgeon.
I do understand your frustration, but wouldn't it be weird if a surgeon operated simply on the opinion of a rheumatologist? The surgeon has given you his expert opinion, albeit in a fairly brusque way.
It is generally accepted, including by NICE, that taking painkillers long-term is not good for people. It's possible that you have been saved from unnecessary surgery and from the side-effects of lots of pain-killers. Give the physio a try. If it doesn't help, go back to the surgeon or get a second opinion. Best wishes.
Why the hell do they have to be so rude??
RA and kidneys/bladder
Should we be writing to our MPs regarding the difficulties we are experiencing with drug deliveries from healthcare at home?
I am struggling to sleep
Cortisone injections Advice 
