Adult Degenerative Scoliosis

[Jomaur]

I have suffered from increasing pain in my back and legs since a fall in November 2021 when I fractured my left humerus in 3 places. I have had Polymyalgia Rheumatica since January 2021 and at first it was thought my pain was due to this. Eventually in July 2022 my GP agreed to send me for an XRay of my back and received a report back which just stated some degenerative changes which he said was normal for my age - I was 74 at the time. He didn’t offer any advice or treatment for my pain and I was really left to sort it out for myself. I then set out on an expensive journey through seeing a chiropractor, a physio who persuaded me to join her Pilates classes which by the 3rd session I was in more pain. I saw an Orthopaedic Consultant who suspected Spinal Stenosis but an MRI didn’t confirm that, a Rheumatologist who diagnosed Fibromyalgia as well as Polymyalgia and recommended 2 Paracetomol 3 times daily and swimming three times a week- this was in December when public swimming pools were turning down heating because of the cost.I also had and am still having Deep Tissue Massage which has helped a little but only temporarily.I had asked my GP for a referral to Rheumatology but he said there was no need but by March this year I was so incensed by one of the other GPS almost laughing when I asked him about pain relief that I insisted on a referral to the Pain Management Clinic at our local hospital. I was overjoyed when I received a phone call a few weeks ago offering me an appointment the following Sunday.

Sorry this is such a long post but it has been such a difficult time as for about 18 months now I have been in pain every day and can only walk very short distances with the use of a walking stick. The first thing the doctor at the Pain Clinic did was to show me the actual XRay of my back taken in July 2021 and ask me what I noticed. I thought it was a trick question as it was glaringly obvious that my spine curved to one side but I told him this and his answer was that Yes You’ve got Scoliosis which could be the cause of my pain and walking difficulty. I am going to have an investigative procedure at the beginning of December and if that is proved to be the problem at another date they will block the nerve endings. Sorry bit hazy about the last bit as I was totally thrown to be told that someone at long last might be able to help me.

Can I ask if anyone has been diagnosed with this and have you been treated and how are you now?

[studebaker]

You have my sympathy sa the back pain is such debilitating condition to live With.

I also have scoliosis but I have also severe inoperable stenosis, degenerative disc disease and osteoarthritis.

I have had the usual physio,osteopath, chiropractor therapy. Very expensive and not much help.

I also had nerve blocking injections and now I have been getting Radiofrequency ablation therapy. So far I had 3 of them and that helped with my pain except when I am standing for more than few minutes the pain is really bad still.

You might get good results with the treatment if your doctor is correctly diagnosed the problem is the scoliosis.

I wish you the best of luck

Dana

[Jomaur in reply to studebaker]

Thank you for your reply Dana and I am so sorry to hear of the problems you have. Here am I complaining about my pain when yours is obviously very debilitating. I think I am more angry that not only wasn’t this picked up earlier although I don’t think my GP would have seen the original XRay film but just the report and obviously the radiographer felt the curvature was of no significance., but also the fact that I wasn’t offered any further investigations or pain relief by our drs. You are then left to really be your own doctor and that involves going down the private route which as you say is expensive. Luckily we could pay for it but it’s had a big impact on our “emergency “ savings as we are both retired. I hope the diagnosis I have been given is correct and that the suggested treatment works but at least I am now being seen on the NHS by doctors who don’t look at you blankly when you ask for help.

Wishing you all the best with future treatment and a less painful life.

[Defenders]

Hi, I’m from the UK too. I have Scoliosis and a degenerative lumbar spine. Basically my back is knackered! My left shoulder and upper arm is also the same and will have a steroid injection soon in my shoulder. I’m 77 and not ready to quit. I have intense pain in my back, between my shoulder blades, which I expect is the Scoliosis wanting my back to bend more and ai’m not letting it! Whoever said ‘old age doesn’t come alone’, was quite right. I also have Peripheral Neuropathy in my feet and ankles caused by the antibiotic Ciprofloxacin, as was Axonal Sensory Neuropathy! I will carry on fighting no matter what! Take care xx

[Jomaur in reply to Defenders]

Good for you that’s exactly how I feel. At our ages we don’t have time to waste and that’s what’s make me so angry that our GP has not bothered to give me any advice or treatment and after about 15 months of this I pushed to be referred to the Pain Management Clinic. Prior to this I had asked him if he could give me anything for pain relief and his reply was that he could prescribe me something but I would probably get addicted. As the strongest pain killer I was ever given was 15/300 codeine/paracetomol when I fractured my humerus in 3 places I felt that was insulting.Do battle on and thank you for your reply. xx

[Defenders in reply to Jomaur]

It’s a ‘do it yourself’ health service! No advice, no effective treatment! I’m in North Wales and Labour are in charge in Wales! I’ve been to the pain management clinic and was disgusted with them, do hope you have a better experience! Keep well and warm over the winter period xx Isobel

[Jomaur in reply to Defenders]

You live in North Wales! Our daughter and her husband live there as well and so do all his family. It’s a beautiful part of the world but our daughter says that all the drs at their surgery are locums, you can never get an appointment and the treatment her mother in law who is 80 and has suffered at least 2 TIAs is downright appalling. If you showed it on television no- one would believe it. Can’t name the hospital on here but you can probably guess which one it is. Seeing that the NHS was founded by a Welshman Aneurin Bevan, he must be turning in his grave.My husband says that the Government at Westminster has shortfunded the NHS in Wales so that might be a reason things are so bad. Our daughter and son in law are moving to a more isolated place soon and she is actually buying a defibrillator as when they were told to call an ambulance for her mother in law after the second TIA it still hadn’t arrived after 11 hours and 999 then asked if they could take her there by car. Stay safe and Pob Iwc

[Maxgate2]

I hope I can help as you definitely need some encouragement. I really do feel for you. I have not had an ablation as the test I had to see whether I was suitable proved I was not. However, I have what is classified as severe scoliosis (my Cobb angle is 60), I have had a spinal decompression, multilevel facet joint injections, two caudal epidurals and several nerve root blocks. I also have rib on hip impingement and PMR.

The horrible fact about adult scoliosis is that there is no complete correction. A spinal fusion is a huge operation with several risks and is definitely contraindicated for the over seventies! Any other procedure may help but the result is not permanent.

I have found acceptance is the first step forward. Next, the challenge is to find what works for you to alleviate your pain. Backintelligence.com is an excellent website. If an exercise causes pain, don’t do it. Find the ones which help you and do them daily. Heat is excellent, TENS may help you, Tiger Balm and Hemp Active Gel give me relief, and distraction works wonders. Diet is important as you do not want to put on weight. Stay as active as you personally can. Your goal is to prevent your curve progressing. Don’t be too hard on yourself; some days are easier than others. With clever dressing, you should be able to conceal your curve. Basically play around with all these ideas and find out what works for you. A friend of mine had a very successful ablation and I do hope you are a good candidate for one. Please let me know and the best of luck going forward.

[Jomaur in reply to Maxgate2]

Thank you for your reply. At first I was rather confused as I have only heard of the term ablation as applied to the heart and this was not a term used by the Pain doctor however I have looked it up and it is the procedure that he will carry out if the first diagnostic procedure proves it will work. Spinal fusion has never been mentioned and I don’t imagine it will be.I had no idea that I had any curvature in my spine and it isn’t visible as far as I know.As for acceptance I agree with you up to a point. I guess you are not in the UK although you may be and are lucky enough to have a more proactive doctor. If I had just accepted my GP’s reluctance to refer me to any specialist or further investigation I would just have had to resign myself to the fact that nothing could be done which is totally against my nature. In the UK unless you have private medical insurance, which at my age is horrendously expensive, you have 2 choices. Either you are lucky and your GP refers you to the relevant department at an NHS hospital and at the moment waiting lists for an appointment can be at least a year or you pay and go privately. I had to be quite forceful to get my GP to refer me to the NHS Pain Clinic and he was most reluctant. This was after I had spent a few thousand pounds on physios, massages and specialist consultations. I then waited over 6 months for my appointment, now a 10 week wait at least for the investigation as appointments are often postponed due to doctor’s strikes. If it goes to the next stage ? Many weeks till that. Hate to say it but our Health Service is broken and we need a change of Goverment to save it! Thank you for your tips and I’ll report back!

[Blackwitch in reply to Jomaur]

Sorry, but I’m late to this discussion and I really didn’t want to hijack it but - I became aware of my scoliosis in early 2021. In April 2020, my back just spontaneously popped, clicked, I had excruciating pain and started with urinary incontinence. Of course the ‘cauda equina’ bells started ringing as I’d had previous spinal surgery in 2012 and with a severely degenerative spine knew what to look out for. I phoned my GP first (should have gone straight to A&E but it was COVID time). Of course, he wouldn’t see me, told me to take Diazepam. I had to seek help urgently and was offered a private day case appointment for microdecompression. I ended up with an huge lump on my back which I was told was inflammation. My GP had no interest but referred me to the Musculoskeletal Practitioner, who in turn referred me to a Physiotherapist. Before all that happened, I saw my osteopath who looked at the “inflammation” lump on my back and said, ‘that’s not inflammation, you have rotational scoliosis. GP not interested. I then went to see a chiropractor who did the series of x-rays etc and proceeded to try and sell me a full body brace at well over £5.000. Apart from that, due to fibromyalgia, I can’t even wear a bra or tight knickers, let alone a full rigid brace. I sought a 2nd opinion but chose the wrong Orthopaedic ‘surgeon’ who obviously wanted me to pay privately to have my whole spine rebuil. Amazingly, following an MRI he informed me I had no discs at all in my lumbar spine (what!).

Next, I contacted the Scoliosis Association UK for advice. I needed to be seen by a Scoliosis Specialist. Can I find one in the whole of Lincolnshire? No.

I’m still stuck in the same position. I would travel but we have 3 dogs who would need to go into kennels. Being a wheelchair user now with Rheumatoid Arthritis, Secondary Sjögren’s Syndrome, Fibromyalgia and this painful lump on my back nobody is prepared to tackle the problem. I’m 68 now and feel that I’m considered too old to bother with.

I’ve tried Pain Clinics (x5 different ones due to a house move) and never got further than breathing and pelvic floor exercises). I’ve paid privately for seated Tai Chi (back spasms), Chair Yoga (cramps & spasms), TENS, hydrotherapy (pool closed), osteopathy and acupuncture (price). My only real help has been my trusty heat pad.

I’m trying to help myself but feel totally let dow, yet again by the NHS. Nobody seems interested. Any ideas?