This coming Friday, 24th, I am going to a face to face appointment to see a spinal consultant. I am in severe pain in my lower back and top of my legs. So much so that I can only walk a few steps and stand for about two minutes.
I had some MRI scans done in March which showed that I have misalignment of the spine and several prolapsed discs. Then of course, we had lockdown, so I have been waiting all this time to see anyone about what was classed as an urgent referral.
I wonder if anyone on here has anything similar and what has been done about it. Also is there anything that I should remember to ask the consultant? My health is not good in general so I have many worries about if they would even perform an operation if it was needed.
On my, you have my sympathy and understanding. I was on holiday in South Africa last year when I was struck down with excruciating lower back pain running down my legs. An MRI in hospital there showed 3 prolapse discs, lumbar misalignment and stress fractures, all causing pressure on the nerves. I spent 3 weeks on my back in hospital there before being medivaced home. I waited 3 months for an urgent several to a neurosurgeon here who repeated the scans with the same diagnosis. Basically he prescribed a mixture of physio, rest and pain relief and my review due in April has never happened. He suggested surgery would be unwise because there are so many problems it could make matters worse.
So ,I genuinely understand your pain and worries. I did the physio concientiously, it does help but it can hurt and it's slow. I walk every day to try and keep the muscles strong to support the damaged joints. In truth I do still have pain every day but it's not unbearable and I am more scared of the surgery than the pain. I find a mixture of rest and activity is best, judicious use of pain relief helps me cope and my GP is best help there, though the consultant said he could do a spinal injection which might help for a short while but carries risks. I find heat packs help the nerve pain, and if I listen to my body and pace myself I can do most of what I want to most days. I have learned to accept my limitations and value the things I can enjoy like going to walk in the countryside with the dog. For a while I didn't know whether I would get out of the wheelchair I came home in so I really do count my blessings, most particularly the NHS and the amazing staff within it, my 3 weeks of bed rest with pain relief on Africa cost in excess of £20000, it was£500 merely to be seen in A&E, £200in cash before they would do xrays, etc.......We really are very lucky despite the delays and frustration.
When you see your consultant ask about physio, and what are the positives and risks of he suggests surgery. Also I asked about what activities were likely to aggravate the condition. I hope you get good advice soon, and relief from the relentless pain, it's so very wearing. Apologies for my long ramble.
Thank you so much for taking the time to answer my questions rounder. I have had all sorts of pain relief but they have been of very little help. I can't take anything with aspirin in it because of having asthma and a hiatus hernia. Tramadol and paracetamol taken together are what I took for my usual pain but this is above and beyond that. I wear Matrifen pain patches and I take Oramorph liquid when I just can't cope any more. It just about takes the edge of it and that is all.
Because of back pain which I was told was degenerative disk disease some years back, I have had several sets of sessions of physio and although I worked hard it it, it didn't help much. I have also had acupuncture which didn't help either.
It is worrying as I get the feeling that they are going to say that there is nothing to be done for me and I don't like the thought of being like this for the rest of my life. We have had to install a stair lift and I also need a special chair to get in and out of the bath.
My husband is very good and does everything in the house, but I just want to get back to doing things and living like we used to do.
It's really scary worrying about the future isn't it. I think it's important to be honest with the medics about your fears. I do wonder whether referral to a pain clinic might help, perhaps you could ask the consultant.
Since my back issues I can't get into the bath so we converted our downstairs cloak room into a walk in shower which has made a huge difference.
Eventually I think for our sanity it's good to stop looking back longingly but try to recognise the good elements of our present life, grasping the small victories with both hands and trying to enjoy what gives us pleasure now....well at least it's how I cope. When lockdown started because I'm shielding I started getting horribly stiff which aggravated my back pain, my arthritis knees and my RA affected joints so I knew I had to find a way to safely get moving. I can't do most exercises because of my back so I started getting up really early and walking circuits of the very quiet cul de sac we live in, to begin with 2 or 3 laps were all I could do, but by gradually adding a lap every few days I got to the stage where I regularly walked 4 miles before breakfast, it was a slog, a real effort of will, but knowing what I could do boosted my confidence. On bad days I couldn't do any laps, and after walking I had to rest to avoid increasing the nerve pain from my back, but it was the right thing for me, we all find our own way of moving forward I think.
I am glad that you have managed to get moving again and walking four miles a day, that is amazing. I have already attended two different pain clinics at different hospitals and they tried different things, such as acupuncture, steroid injections, hydrotherapy and attending a pain mindfulness group, but I am afraid I didn't get any benefit from them.
I have also been shielding and thought I would get so many of my hobbies done, but there is still so much to do, I don't think I would ever get bored.
I agree with you about finding things that we enjoy and that is the way I have coped. I make greetings cards and when I sell any, the money goes to charity. I also love reading, having friends round, Facebook, sorting out many years worth of photos I have taken and putting them into albums with decorations around the pages. I also love playing the guitar and keyboards but am in too much pain to sit properly and do that now.
My most recent interest has to be that I am writing a book and am now working on chapter five. I am really enjoying doing that.
Good to hear you have so many hobbies, there's absolutely always more to do than time. I've started making cards in lockdown, I love playing with colours and shapes, I do lots of crochet and give it away, and love to bake. Sorry the pain clinic wasn't helpful, I really do hope that you get some positive help soon.
I am glad to hear that you have started card making. It is very addictive and there are so many lovely crafting items to buy to make lovely cards. I am always saying that I won't buy anymore because I have so much that I have run out of room for it all now, but then I see something different and I go ahead and buy it. I am sure that you will become the same. My husband has made a room at the back of our house into my crafting room so everything can be kept in there now.
At present though, my son is working from home so he is in there as well so I am not getting to do so much as usual. I am glad he is able to work from home though as it is so much safer like that.
Keep safe and happy. xx
Hello 👋—
Recently diagnosed with DDD and stenosis—— stage 2 .....after two mri s and weakness and pain and whole body numbness.
It came on suddenly and my doctor thought possibly MS (still not ruled out).....
Had to wait to see neurologist....My first appointment with him, he told me I have bigger problems and immediately referred me to a neurosurgeon the next day. He fold me I need spinal surgery ASAP. He gave me no guarantees that it would help.....putting pressure on my spinal cord. Surgery was scheduled in two weeks, then coronavirus hit. Surgery got put on hold, I was told if it got worse, call. I it was almost 3 weeks and I called... I told him I wanna try the surgery. Fusion on c4, c5 &c6—-neck.
The surgery was done April 17th, I was in the hospital for two weeks, because I live alone and have no one to help. It is somewhat better, still experiencing weakness, numbness & trouble walking without my walker or cane.
Prayers and best wishes for you 🙏
in reply to
Thank you for you reply Redhead. You have certainly been through it and I wish you a good recovery. xxx
Thank you so much Brian. It is reassuring to hear of someone having good results for an op for their back. What did they do in that operation?
I think that we are often fobbed off with physio. I know it works in probably most cases but not in all. I was referred to a physio for very bad pain in my shoulder and arm following a nasty fall. It seemed to be helping at first and then it suddenly got a lot worse and I felt as if something in my shoulder was loose. I couldn't use my arm at all. When I told the physio, he got hold of my shoulder and arm and pulled it really hard making me cry out. This was the point where the pain became almost unbearable, so I decided not to go to physio again. When I didn't go, the physio rang me and told me off and I told him that it wasn't working and was making it worse. He responded by saying that I would only be back there again within a few months because I still needed it.
My doctor then finally referred me to an orthopeadic surgeon who was appalled at my X-rays as there was so much damage to my tendons that my arm was hanging with almost no connection to my shoulder. I had to have a shoulder replacement which has been wonderful.
I remember the Surgeon was reluctant at first saying that they where in “ Tiger territory “ But the pain and immobility was so bad that I told him it had to be done . I believe that he either took out part of , or reduced, some of the discs that where compressing the spinal cord
That sounds awful as being so near to your spinal cord could have meant that you became paralysed. I think you were very brave to go ahead with it. I have heard of some people having steroid injections in that area but I don't think they would be very successful with me, because I have had so many over the years that they are no longer effective. I even had a guided ultrasound one done into my shoulder at one point and that made no difference at all.
Unless anything thought to be dangerous is found you will probably be referred for physio....which is very boring & repetitive...but it does help in the long term.....but it will be down to you to diligently perform the exercises you are given.
I fractured Thoracic vertebrae back in February & following an MRI to confirm X-ray results ...physio exercises really have helped.....but of course they only help if I knuckle down & remember to do them!
Hope your coming Consult is helpful.
Thank you for replying AgedCrone. I have had physio on my back off and on for years and sometimes it seems to help a bit, but most of the time, I doesn't.
I am glad that you are doing well with yours. I will just have to wait and see what the consultant says on Friday. xx
I don’t mean physio manipulation by a physio I mean good old fashioned nitty gritty exercises at home ...3 times a day.
I’m not doing cartwheels or high kicks...just Controlled stretching & turning.
I was determined not to let my lower back muscles sieze up...& although I would much prefer not to have to make the effort...it does get less painful...I’m only on about week 4 of 5 different exercises & they get easier & less painful every day.
I hope you get some help on Friday... if you are advised to do some exercises....despite the initial discomfort..do give them a go.
Yes, if that is what the consultant says would be good for me, then I will give them all I have got. I know you didn't mean manipulation but that you meant exercises. I have had times of having to do a lot of exercises for various problems in the past and am usually very good and keeping to them, and only leave them off if I am feeling very unwell or am out for a long day.
My sympathy. I’m in chronic and constant pain too with my lower back since I fractured my femur just above a 2year old knee replacement is 2015. Margate hospital sent me home with a cricket pad splint. They didn’t pin or plaster the leg. A doctor did ask me at 2am in A&E if I wanted them to treat me or be referred to the Royal Orthopaedic where I’d had the knee replacement. I thought it best that I be referred to the ROH. I was home dragging this heavy thing round on my leg when I had a call from Margate Hospital saying I was to be non weight bearing. I was taken that afternoon to The Victoria Hospital, Deal. A few days later a doctor, looking at the X-ray said the crack had moved. I NEVER HAD A REFERRAL to the ROH. I spent 8 days in Deal. I couldn’t walk or drive. MyGP surgery always had no appointments Because you only got an appointment on the day, not in advance, I live alone and truly had no one to help me.
The crack healed in a bad way, and I wasn’t in much pain, but my lower leg was starting to veer outwards. Now 5 years later the right lower leg is well out of line and I have severe scoliosis of my lumber vertebrae and my back is excruciating. I gave up on the NHS. I cannot really afford it but in 2016 I bought private medical insurance for a huge amount. I am 76. My Gp told me I couldn’t have spinal injections. This is not true. The spinal surgeon I have attended privately said the NH S no longer pays for cortisone steroid injections because they are not always successful. However in February I had these injections in my spine. They helped with the pain, but by end of April they had worn off. Because of Covid even the private hospitals were closed to non-Covid Patients. Now things have eased, I’m going to have a second lot of injections into my spine this month.
Then I hope to use my private policy to finally get my leg straightened. I know it will all take a long time and be painful, but like you I can’t take much more. I have lost 3inches in height, I cannot stand straight and without my stick would fold over sideways on my right side, like closing a book. I’ve had 3 frightening bad falls. I get some pain relief with codeine, ibuprofen and paracetamol. I only take 30mg of codeine when I’m on my last gasp. Codeine plays hell with my bowels! My greatest reliefs are ice packs on my knee, and a TENS machine on my back that is a life save. I pay £50 a week to dog walkers,and desperately need a cleaning lady because I cannot dust or vacuum. I retired after a long teaching career to live by the sea in 2012 but now I cannot even walk to the cliff top quite near. I cook simply and pay the bills. I have no social life and family is 3 hours away and in NewZealand. I’m sorry to moan. I’m not broke, I pay the bills, and I’m so much better off than so very many. My best wishes to all my fellow sufferers. I hope you will be pain free very soon.
Oh dear, I have just written a long reply to you and then I lost it, so this will be a shortened version now.
I am sorry to hear of all you have had to go through and think your treatment at the hospital in Margate was disgusting. It must be so hard for you being on your own. At least I have my husband to look after me and my son is very good too.
I sound very like you, as I am walking more and more one sided and think I look like the Hunchback of Notre Dame, it is the only way I can walk now and it must be putting other parts of my body out of alignment too. I have also had three bad falls, and one of them tore all the tendons in my left shoulder, with the result that I had to have a shoulder replacement last year. I have lost two and a half inches in height and that is not good when I was only 5' 1" to begin with. I will end up about 3' tall if this carries on.
I take both tramadol and paracetamol together but to be honest, they don't do much good. I can't take anything aspirin based because I have asthma and a hiatus hernia. I also wear Matafen pain patches which don't seem to help much either. I have a liquid morphine to take when things get to much to cope with, but I try not to take it very often.
Don't apologise for moaning 51114, you are certainly entitled to with all you are coping with. You are paying an awful lot to dog walkers, would it be worth thinking about rehousing the dogs and using the money for a cleaner?
I will just have to wait and see what the consultant suggests on Friday. I hope you manage to cope with everything.
Oh you have my sympathies! I had horrendous lower back pain only when standing. Like you I could only bear to be on my feet for a couple of minutes. Turned out I had spinal stenosis due to a crumbled facet joint, I had a a spinal fusion/realignment at L4/5 and haven’t looked back! Pre surgery I was in a wheelchair and now I’m back on my feet and that was 7 years ago.
I really hope there’s something they can do for you. xx
Thank you for answering me NanaFifi, you have given me some hope and encouragement there. I am in a wheelchair and can't move anywhere without severe pain.
How long were in hospital and how long did you take to be able to walk properly again please?
Hello Holly-Willow; I can feel many emotions in turmoil and COVID is certainly doing a weird spin on health care. And, we are in the initial phase, along with the rest of the world, on action plans especially in this critical area (health, well-being...). Certainly a new challenge as you have already been aware of and dealing with; delays in appointments especially that very important first one with a specialist. Those are some involved and serious spine issues. Everyone “owns” their own pain but I certainly can emphasize with chronic and debilitating pain and recognizing the limitations that come with it. It’s an on-going self-learning lesson that transforms its ugly head quite frequently.
I’m thinking back over my many encounters with specialists that involved eye-opening understanding of what the heck is going on?! It was with a neurosurgeon. She had the X-rays, the MRI’s....and sorta “blew me off” once she had decided that my back, spinal cord and discs were not worthy of her type of surgery. I wasn’t advocating for surgery at all but I needed to hear and process what she said next. Remind you that I did not just get up and say thank you very much and proceed to walk out. I sat back down as she held on to the doorknob. Something did not settle right with but when covertly pressured to provide more information to me, about me; I left with a more clear understanding about PAIN. For Me #1 Lesson: Even though my test results (the black and white evidence) were problematic for me, the pain level I reported plus lack of mobility were not in alignment with the expectations. My pain and mobility complaints were much more than what she saw on those test results! First thought, I’ve gone over the edge into imagining all of this ?!?! Thank goodness that I am stubborn and insistent; I had not budged at all off that chair! I saw in her body posturing that she had processed my concerns. Viola! She went on to explain that she has seen far more spine involvement, black and white tests, on others who did not express the type and extent of pain as I was in! And, that is when she sat down and introduced me to the enlightened diagnosis of, “pain, especially chronic, is processed for us beyond that initial on-set in our “own” way; we do, indeed own it! Like snowflakes; no two exactly alike, no matter that the composition is the same. What we, or our brains process this huge intrusion on our life varies in unique I ways. An Ah-Ha! moment for me! Humans tend to compare, my is worse than yours and so on.....avoid that, if possible, please. And, proclaim, this is MY PAIN! It’s not to be dismissed or belittled, especially by a specialist (she regrouped fast and was excellent at describing the above scenario) or by anyone! One more eye-opener from this appointment; Yes, this is MY PAIN, I OWN IT! BUT, IT WILL NOT OWN ME!
That is easier said than done:). This is when mental health providers can help out, as well as OT, PT and physicians, specialists included as well; tune in and listen to us, listen about MY pain. I am a Master at describing it.
Hope this helps, even if a bit in focusing on you, your pain, compare only within oneself (changes, medication effects....). Have a great start into the exploration of acceptance, adjustments and challenges of all kinds. God Bless you in this! Susan
Thank you for your words and thoughts Islandlife. I went to a pain mindfulness course last year and was told a lot of what you say and it all makes sense.
At that time, I was in severe pain in my shoulder and arm and could only lift it up about six inches. I was waiting for a shoulder replacement and that was done last November with excellent results. Then suddenly in January the pain in my lower back (which I had had in varying degrees for a number of years) suddenly got extremely bad and also came into the top of my legs. Since then I have tried many ways to help it, the obvious pain killers, morphine, exercises, rest, doctors etc to no avail. However, I keep busy and mostly happy and am never bored and I think all of that is important.
I can see where you are coming from and a lot of your thoughts are the same as mine and I also believe that we have to stand up for ourselves against doctors who are not willing to listen or spend time with us. In fact, about three years ago, I reported one of them and it got results.
Obviously I am concerned about how my appointment will go on Friday, but I am trying not to over think it.
Hullo holly-willow. I had similar surgery 12yrs ago. They warned clearly of all potential horrors, but just as clearly said that such results are extremely rare nowadays because they don't go in unless they're very sure of what they're doing. You can confidently ask to discuss anything you wish to. Mine was straightforward all through & a huge improvement. For the first week after discharge I ate, toddled about, & slept a great deal as had been full of morphine. Thereafter careful but steady return to normality. The wound was redressed once, can't remember time scale. Now I'm needing more surgery in a different area, because of other conditions I had a v thorough pre-op (in Jan!) They seemed sure of success. All pear-shaped now, of course! Hope this helps. Best wishes.
Thank you so much Hobbledhoy, it has helped a lot to read your post and I am so glad that all went well with you.
Do you know how long you were in hospital at the time? I am sorry you are facing more surgery. I had surgery to replace my shoulder last November and know that at some point they want me to have a knee replacement and I also need some toe nails removing so it seems never ending. Still at least things such start moving again soon.
Hi Holly I hope your appointment goes well.ibe suffered with lower back pain for 7 years. I've had lots of physio over the years but nothing helped I also had several mri scans.my mri from last year showed my back had got worse lumbar herniated discs tapping nerves and arthritic facet joints.i had a discectomy and facetectomy operation last year IN October and I was pain free for 6 months but ive been referred back to spinal consultant as pain is back to like it was before surgery. I hope whatever they decide will help you get free from pain.
Thank you for replying Kels. I do hope they are able to help you again, I am surprised that your pain is back after only six months. How long did it take for you to get over the operation? xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
UPDATE - First consultant appointment &diagnosis 
Update to consultant appointment & triple therapy
2nd appointment with consultant today
3.30 today, appointment with my RA consultant
