I've just had a call from the A and E dept. who arranged my MRI, which I had on Tuesday afternoon.
Not a pleasant listen.
I've to be vigilant about the signs and symptoms of possible cauda equinas as I have a moderate central spinal narrowing.
The MRI also showed a large prolapse of L4/5, with nerve root compression.
All lumbar taset joints are inflammed and degenerated.
There is severe OA throughout all the lumbar spine.
L5/S1 are fused (I've had a previous disc enucleation at this level).
A and E are contacting the neurosurgeon who I have an appointment with on 30th June for my cervical spine issues, to ask him for an opinion on my back too.
Yet more convinced that I have a spondlyarthropody and have had for decades.
But.....I am being taken seriously, as there is undeniable evidence now. It is just a pity that I had such a bad start with my then GP and rheumatologist, who were told repeatedly about my neck and back issues. So much lost time, poor treatment and not being listened too 😥
Edit : and a grade 2 anterolisthesis too
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Mmrr
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Glad you are finally being listened to and while I don't profess to know some of the things you have I really hope this is the beginning of moving forward, as you say a lot of precious time has already been wasted. xx
Oh crickey Mmrr! Not a pleasant call to receive, that certainly isn't what you wanted to hear I can imagine and after all this time of trying to make someone listen you're now faced with this. Maybe now that they are contacting the neurosurgeon you may be seen earlier than end of the month. I'm really sorry to hear it but as you say, you are being taken seriously now - what a shame it's taken all this time!! Another case of GP and Rheumatologist neglect! Just dreadful. xx
The 30th will be fine for the appointment, so long as I'm aware of my situation.What can be offered on 30th is another story.
I’m sorry it’s bad . You have constantly mentioned your concerns and it’s maddening that Gp and rheumatologist dismissed you . Your an articulate person if you can not get through to them there’s no hope for many. I wish you well and hope that things progress quickly now there has been confirmation. Shame it took so long and you had to suffer.x
It would be so easy to let the not listening, inappropriate labelling and so on eat away at you, but I won't. I just need to wallow for a bit, then I'll move on.
But...I stopped taking nonsense from the medics a while back....and I will be no more.
Once my internet is reconnected I'll be reading up on everything I can get my hands on, and preparing for the up and coming appointment.
I like that last sentence. NO PRISONERS . You have dealt with this so well . Your internet will be smokin. I almost feel sorry for doctors but no quite. X
I'm always polite to a fault and so is my OH, we worked together for years and are used to dealing with large crowds of baying teachers out for blood and updating Scottish Government in meetings. A bit of a double act, he can be very amusing.....excuse me Dr, just for the record, are you saying.....as he takes the pencil from behind his ears and writes....
I didn't quite catch that .....no I don't need you to spell it...could you just speak up please ?
Now I now it's progress but sad its taken so long and you have probably now permanent damage caused by the delays. Have you any idea of what can be done now ? and what is cauda equinas ?
Cauda equinas (horses tail) is a rare but potentially dangerous situation where the end of spinal nerves, which look like a horses tail, are compressed due to bilateral disc prolapse or as in my situation narrowing of the spinal space. It can cause paralysis, and loss of bladder and bowel function. It is a medical emergency.
I don't have the signs and symptoms, but have to be aware as the spinal space is moderately narrowed, and a lot of other stuff is happening too. Only 13 days until I'm seen by the spinal surgeon.
My goodness that is a worry and awful to read. Hopefully you'll get some real help when you see the surgeon. You must be so careful and protect your spine as the risk of more damage is such a worry. x
I had cauda equina after a nasty accident. Had a fantastic surgeon who operated on me. Just luck of the draw that he was on duty that day or things could of been very different. I hope things work out for you as well as they have me. Ok my back etc… aren’t as they were but compared to what could of been I’m doing ok.
Oh that must have been a serious phone call. Not good news at all but you must feel vindicated. Not depressed, not a hypochondriac just knowing your body. Wishing you all the best for your appointment with the neurosurgeon. I sincerely hope that you get the apology from the GP and rheumatology which is so overdue
I felt very sorry for the junior Dr who called me, I hadn't seen her during my two A and E visits. She was kind and honest, by her own admission she didn't know much, but had been asked to ring me regarding being vigilant about the possible cauda equinas and letting me know they were asking the neurosurgeon to consider my lumbar spine too at my up and coming appointment. To be honest there were no big surprises, I knew something serious was amiss, obviously not what it was though 😂
If I ever have the misfortune to cross paths with the first rheumatologist who saw me (now thankfully retired) I'll need to say something. She lives in Edinburgh too, so possible I may see her.
Good morning Mmrr,I sincerely hope they can offer you some sort of solution for
this very worn out back of yours . It must be so worrying . There are some very good surgeons out there amongst some not so good . If you had plenty of money you possibly could choose the best out there and go private .
It's appalling that you were not listened to by your GP and Rheumy for so long. And yes so much wasted time. I hope now you can get on the road to recovery. You should be so proud of yourself for continuing to stay strong, despite the hurdles, and for advocating for yourself.
I’m so sorry to read your post , but pleased at long last they are jumping on it . Unfortunately as seems to be the case it has to be when it’s literally falling apart are you taken seriously . I hope you see the neurologist ASAP 🤗
Oh goodness Marie I'm sorry to hear this but at least the outcome of the investigations give specific evidence of what's been going on.It is so disappointing that your weren't listened to long ago when you raised all the issues you were dealing with. I hope now the Rheumy and Neuro teams will communicate and together work out the best way forward for you. xx
Oh Mmrr. I just wanted to send some love your way, I have a mixture of emotions going on for you reading your message.
I just truly don’t understand why the medical profession just won’t listen at times.
So angry that you have been ignored and now have very serious and life changing health issues alongside all you already have to deal with. 😥. Gentle hugs 🤗. x
I trained as a nurse 1976 - 1979.We were always told listen to your patients, 'listen' to their non verbal communication.
We were taught that it takes 3 years to learn how to bed bath someone (the length of our training). It is your opportunity to assess your patient, head to toe....and their mental health by chatting to them. What are their eyes telling you as you approach the bed ? Their voice is it strong ? Skin colour, sweaty and so on. What condition is their mouth in, check their pulse whilst washing their arm, fast / slow / regular....and so on through every body system.
A very skilled procedure.
Sadly trained nurses are not involved in much nursing care anymore, and the skills lost.
And that is why so much is lost in telephone conversations! It’s the non verbal signs that tell the truth. We all live under the I’m fine umbrella. It’s what is not said that is the truth❤️🩹
So sorry to read your news. You are on the ball and knew something wasn't right and pushed for answers- and thank goodness you did. I wish I had half your knowledge and gumption in dealing with medics! Your OH sounds wonderful and a great support to you. I loved your 'no prisoners' stance. Hope you get answers and action on 30th. Thinking of you x
I'm really sorry you are in this situation, I hope they can offer you some resolution for these problems.
At the very least they rang you so you can be aware in the short term until you've been seen. I presume you will be classed as an urgent case, this can'tbe left to continue?
No surprises about the slipped disc and nerve root compression, I remember the pain well from 30 years ago and my previous slipped disc. Nor the OA, but the extent of degeneration and other bits and bobs has been a bit of a shock. Along with all the cervical issues my spine isn't too happy.My RA, if that's what I have, has never been so good. For the first time in years I don't have any painful joints, for the first time in 2 years my ankle joints are not swollen. It's almost as if my body is compensating in some way.
Goodness knows what can be done, the thought of stopping the RA meds for surgery, if that were suitable, terrifies me. I can't go back to the way I was pre leflunomide, toficitinib and prednisolone.
Yes, stopping the meds is my fear too. But I don’t know how long for as these sorts of surgeries can be pretty microscopic/delicate so perhaps not for as long as with something larger? Hope your neurosurgeon has experience with RA patients.
I comfort myself that my thoracic spine is perfect....
As long as I keep up the exercises and don’t sit down too long then neck and lumbar spine are ok’ish. Have bought new chair and footstool which is more comfortable too - but very difficult finding an upright chair with head support that doesn’t look as if it belongs in an old people’s home!
Sobering telephone call. Did they tell you how you came to have central spinal narrowing? I was told I have a 'constitutionally narrow spinal canal' which I assume means I was born this way.
ended up with a laminoplasty in 2002 - decompression and fusion from C3-C6. I'm wondering if a narrow canal can be caused by years of RA or whether it really was that I was born with it.
I wonder too, in 2002 I'd had it 31 years so plenty of time for it to do it's worst. Or, are some people just born with narrow spinal canals, who knows?
How would anyone know you were born with a narrowed canal, unless they had evidence from a scan taken at or around birth ? Many people do have narrowing of the spinal canal as they age, but not enough to create compression issues.
OA / RA are two of the biggest culprits, my money would be on these too.
I am pleased that you are now going to get the treatment you need. It would have been better had you been listened to earlier but there is no point in looking back. Look to the future and better days. Onwards and upwards.
I am so sorry in the way you were misdiagnosed and have to suffer so much. At least now they found out the cause and hope you will receive proper treatment which will help your recovery. Hoping for the best ,Good luck and I am really sorry for the ordeal you had to gp through. Much love
So sad to hear your spine is so badly affected by arthritis. Surely your neurosurgeon must come up with a comprehensive treatment plan now! I have everything crossed for you in the 30th.😘🤞
Sorry to read this, you must be very concerned. I hVe been battling with problems and have results of lumbar x rays today, . Was diagnosed with osteopenia over 30 years ago and yet to see consultant of any type. On the checklist i met every criteria. Now my leg has swollen and I have an appointment to see a GP today as well as getting results.my partner had an MRI yesterday and is waiting for his results so we are a little in the wars!
No quite a heady day, blot clot diagnosed in leg, infection diagnosed in ribs, scans and DVT clinic Sunday., so I think i will leave ball kicking to the experts tonight! In all the excitement we forgot the lumber scan.... maybe next week....!
Crikey mmrr I have had to get my google box dictionary out. You poor soul. The only positive in this whole sorry tale is that you were right. I wish dr would listen more we do know our own bodies we live in them every day!Hopefully someone will now give you proper help to ease your pain. Chin up ( or down) if it hurts. 🙋🏻
It sounds so arrogant to think we know more than consultants who have spent the best part of 20 years training, but so often the patient turns out to be correct. Often Drs just don't listen, or we don't fit neatly into the box.Someone on this forum wrote a few weeks ago that he has been correct with every diagnosis regarding himself and his daughter, whilst the medical profession floundered.
I am not at all surprised. Just stick to what you know to be true. Try to get in a bit earlier if you can. If positive thought help in any way there are motorway amounts travelling your way now. Look after that horses tail and keep safe. 🐴
Spot on! And yet people tell us not to Dr. Google. Yet it has helped so many people. We know our bodies better than anyone, and we know when something is not right.
Dr Google is mighty flawed, but it is not prejudiced and considers all options, and changes diagnosis as the signs and symptoms change. I hate to say it but AI medicine may be the way forward.
Hi M, as you say, you are at last being taken seriously. So much damage has been done already creating a complex situation. You must be, and have been for a long time, in agony and the frustration of not being taken seriously for so long must have made you feel like screaming. You aren't exactly in a position to kick a cushion to vent your anger either. I truly hope that you will get the very best of attention now and that everyone will be keen to try to make up for the time that has been lost. A step in time would have been worth nine springs to my mind. God Bless you. Look forward to hearing what the plan will be after your consultation. x
Hi I’ve had endless tests, mri , X-ray on my lumber region and nothing shows up and then I have realised that at the time of these, my back etc wasn’t inflamed. So this time I am going for a walk, bend so that the inflammation will show up. Your thoughts please.
I'm not that mobile at the moment because of the pain, but for the 24hrs before MRI, I was as mobile as I could bear to be. Sitting in the car is also so uncomfortable, so my OH took the long way to the MRI centre.I was MRI'd on behalf of the NHS at a private clinic, pleasantly decorated but had the most uncomfortable low backed 'designer' chairs that I chose to sit in, my appointment was running late, I could barely sit still by the time I was called and I struggled to walk to the scanning room.
The MRI itself was absolutely fine, a wedge was put under my knees which I found comfortable (I can't lie flat with my legs straight for the pain).
I took all meds as normal as my appointment was late afternoon and I would not have managed without them.
Sorry to read this update Mmrr, no wonder you have been in so much pain. Hoping the neurosurgeon can come up with a plan on the 30th that will bring you some relief. Big hug 🤗
Thankyou.There is also much relief in that I know I have just not, not been dealing with the pain. Nerve root pain is the only pain I have experienced that is on the same par as labour pains (except there is no rest with nerve root pain, it just goes on and on) and I've had 3 normal births.
Yes, when we have pain and the medics dismiss us, it inevitably makes us doubt ourselves doesn’t it? I get nerve pain in my damaged foot, and whilst I think it is probably nowhere near as intense as your back pain, it is definitely the worst pain I have ever experienced, I describe it to others as like having horrendous never-ending toothache in your foot. Has had me curled up in a ball rocking at times. Fortunately unlike you I have been able to tolerate amitriptyline which has diluted it a little.
Bless your socks, it makes me mad that we have to fight for help. Finally you will get the help and care you need.I had a chat with my GP who was part of the it’s a sprain no more than that team. I laid it on thick, and calmly about the extra time, pain and bone damage due to people not listening to me. I’m not a mean person, however by the end of our chat she could not look me in the eye.
We, my OH and I use the maintaining eye contact when asking difficult questions technique. I believe it gives great insight into the practitioner , usually medics, attitude and thinking.
Listening and advocating for their patients IS their job 🙄 not knowing everything is ok, none of us do, no matter what job we are in.The junior A and E, Dr who phoned me with my results, was kind and honestly stated she couldn't not answer some of my questions (I'm just the junior A and E Dr, you need specialist input) but the neurosurgeon would on the 30th June. She offered pain management advice in the meantime and told me not to hesitate to call 999 if I suspected signs of cauda equinas, not to call the GP.
Went to see Gp, who diagnosed a blood clot in my leg, gave me a test to confirm, and Apixaban, have 9 am DVT appointment at Oxford hospital on Sunday, no buses running, will have to get a lift. Diagnosed problem with my ribs, thought it could be an infection., so booked for CAT scan on them also next week. Forgot to discuss lumber scsn in the rush, hopefully have another appointment for this next week. All that and the respiratory consultant this morning too, am exhausted!
Yes a heavy day, am lucky that I live in Oxfordshire and therefore am served by the Oxford University Trust hospitals, not easy to get to for 9 am on Sunday morning, but good to have an appointment so quickly. Was there yesterday waiting for my partner to conclude his MRI scan and actually noticed the DVT signage, spooky!
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Mri scan
MRI results are in
My MRI scan results - can anybody help please?
Michelle
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