18-year-old DS's excruciating, years-long sciatica – need hope

[DaringDIYer]

I'm desperate for advice and hope from anyone who has cured their sciatica pain and/or has medical expertise in this area.

DS, nearly 19, has experienced sciatica in one leg since incurring a sports injury nearly four years ago. He was on an elite sports pathway at the time and was pushed too hard in training. The injury (hamstring) healed but sciatic nerve pain has persisted on his left side, from lower back to foot.

COVID arrived, which slowed investigations and treatment, but he had an MRI in mid-2020 which showed a "slight change in the shape of the L5/S1 disc". Two private physios felt this could be causing the sciatic pain by the disc irritating the nerve, but the sports injury consultant DS eventually got referred to disagreed and prescribed excruciating exercises (he wanted DS, then 15, to cry), which DS did. They improved his flexibility but only aggravated the pain.

We have since seen physios and a chiropractor privately (and DS has done and still does his latest prescribed exercises and what he can in the gym) but they will no longer see DS until a potential disc issue is reinvestigated. Piriformis syndrome has been ruled out (I can't remember why, but DS's symptoms do present as this).

So DS has now been referred via his GP to an NHS orthopaedic team and had a repeat MRI a month ago. We're waiting on the results - he has an appointment in a month. But he's been warned the MRI may show nothing.

Today, DS messaged me from work in agony, sounding utterly defeated. He says the constant pain is ruining his life and he's so fed up. He said four colleagues today commented on him limping; he's adjusted his whole gait in compensation and now has new aches and pains as a result. He also has intermittent numbness/tingling in his foot, which I thought would escalate his case but it seems not (isn't this a risk for nerve damage?). He's on nerve blockers currently while the orthopaedic team investigate the MRI; they've helped somewhat but he still has days with awful pain - this week has been bad. This flare-up has been the worst yet and gone on since July last year without let-up.

Most of all, we want DS to be pain-free. If that's possible, it would be wonderful if he could participate in team sports again, which was/is part of his identity and which he misses desperately. (He's been an incredible athlete and has had to go through a grieving process with this pain.) He has a place on a sports-related degree course at a sporty university and I am scared that when he goes this autumn, this issue won't be resolved, that he risks losing continuity of care, and that all the elite athletes around him and the currently-unusable-for-him sports facilities and opportunities under his nose could tip him over the edge.

He's an otherwise fit and healthy, sporty, lovely 18-year-old with so much going for him. This just seems so unfair and unending.

Anyone know what might be going on here? How do we get the best out of his next orthopaedic appointment? What if the MRI shows nothing? Anyone else cured their own long-term sciatica? We're so desperate for help and hope.

Thanks for getting this far.

No answers OP, but sending you strength. What an absolutely crap situation- so unfair. I really hope you get some clarity soon for your DS.

No answers here but sending best wishes. What rotten luck he has had!!
Is there any chance of going private?

Thank you, @Bibbetybobbity. Yep, absolutely crap. It's just going on and on. Appreciate your kindness.

That's so bloody tough.

Bumping for you, and really mystified by the sport consultant's approach, but I'm not an expert. I really hope he gets some answers.

My only contribution is, if he's referred to a pain rehab or pain management clinic, try to see it as a positive intervention, simply because the physio-led pain rehab course my late dh went on for back pain really changed things for him.

Download the Curable app and listen to the podcasts/science behind cures for chronic pain. They talk about case examples where MRIs have shown nothing and different types of pain. Look up the Cure for Chronic Pain podcast, Dr Howard Schubiner, Dr Alan Gordon, Nicole Sachs (she had/has recovered from a serious spinal problem herself if I remember correctly) if you want to get a flavour before paying for the app.

And thank you, too, @justgettingthroughtheday. Going private is in the back of my mind. We've done it for physio and to see a chiropractor. But it's all down to me (his dad has no income - we're not together). And we don't have private healthcare cover.

I have some savings. Because physio/chiropractor appointments and exercises aren't shifting it, I guess we'd be looking at a private consultant, their own tests, etc. - which would cost more than a £50 physio session.

I'm open to anything by this point, and can always discount what I truly can't afford.

Thank you, @PermanentTemporary. We'll try to keep an open mind if pain management is the referral pathway, although I know DS's (and my!) morale and confidence have suffered after nearly four years of this, and on the face of it, that would feel like 'another thing that won't work'. But we need reminding to keep an open mind so thanks for that. I'm glad it helped your husband, and am sorry for your loss.

And thanks, too, @Heroicallyfound. That sounds like a whole untapped area for DS and I to look into. Thanks for linking.

It sounds a bit random, but get his B12 and Folate levels checked. My sciatica was put down to an old injury and disc degeneration for years, but it turned out to be B12 deficiency. The sciatica disappeared once I was on B12 injections, even though my degeneration has got worse since

Oh wow, @AriannasGuitarCase - I'd never have thought of that. Great that this sorted your sciatica out. Can I ask: did you have it on just one side/leg or more generally? We'll definitely ask the GP to test. Thanks for sharing.

Oh your poor DS! I have no idea but I really do hope your next appointment helps.

I feel quite emotional for him, I'm sure he is absolutely sick of it. He sounds brave.

Do you think what the sports injury consultant did was correct? I wondered if there might be grounds for complaint.

I had a slipped disc years ago when pregnant and was left with terrible sciatica after the birth, settling in my lower calf. Related to L5. I had an injection in my back and although it took a while to work ( I can’t really remember… weeks?) it did. When my sciatica was bad I used to cry in pain when I had to stand still. Since then I have always been so careful with my back and posture. But I got back to running and made a full recovery. I now do Pilates twice a week and it keeps my back and core in brilliant condition. Ds is a keen sportsman and also does a lot of Pilate type exercises to warm up. Don’t give up hope. Good luck

Accupucture, I swear by it

I could write a novel but I'll try not to!

Had sciatica for years after roller skating down concrete steps and landing on my bum, exacerbated by falling off horses and then falling down stairs again and breaking my ankle
Would flare and then settle, saw many physios and had treatment

Adding dates for timescale
Jan 2017 woke up with sciatica that felt wrong, not my usual
March 2017 go to the GP. She sees me walk in, winces and starts typing a prescription before I sit down. Start diazepam, dihydrocodeine, naproxen and paracetamol and referral in
April 2017 go to a&e as not coping with pain, given morphine to take at home, scanned and massive disc herniation found
Attend referral after I take a short notice cancellation, agree to surgery

May 2017 (48hrs before op), get into bed and feel like warm water is running down my legs. Ponder for a bit, go to a&e, end up discharging myself oops as I had PMT and wasn't thinking straight
Op (discectomy and laminectomy) done, 5hrs with a 15mm herniation at L5/S1 and cauda equina. Walk after an hour, discharged after 21hrs when the neurosurgeon calls me wilful

Do private rehab/PT, build up walking to 5km, back on a horse after 8 weeks and running/lifting weights after 5 months. Follow up results in neurosurgeon saying wilful patients often have good outcomes and to please try not to fall off a horse

HELPFUL THINGS

Don't sit, it's awful for discs. Stand or lie, use a pillow between knees if on your side. Google log roll out of bed for how to get up

Try not to bend over, especially for lifting anything. Squat instead and don't twist

Thermacare lower hip and back wraps (Amazon) were one of the only things that kept me sane when I wanted to cut my leg off. And take painkillers regularly, paramol is decent if not on prescription codeine and then add ibuprofen to that or whatever combo you can get

Take any cancellation if you are close enough to the hospital, I got 20 mins notice to get there

If they are offering surgery, take it. I wouldn't hesitate if another disc goes. I do have some slight nerve damage to my foot and lower leg but it's minimal

GOOGLE CAUDA EQUINA red flags. Any of those then straight to a&e

I would try acupuncture with a proper practitioner not a physio who does acupuncture as well. I’d also try an osteopath. I think if ask the GP if they can refer you for a second opinion. Find the regional specialists for your wider area.
I wish him luck with it, chronic pain is awful for your mental well being and especially cruel when he’s so young.

@DaringDIYer I only had the sciatica on one side but I did have numbness and tingling on both

Also sometimes discs don't fix themselves. Some idiot told me I shouldn't have had surgery, if I hadn't I would have lost the use of my legs. The surgeon laughed a lot when I asked if it would fix itself, the disc was fucked

Definitely worth trying acupuncture with a proper acupuncturist. Not a physio whose done a weekend course. Try the British Acupuncture Association to find one that's qualified.

I don't know what prescribed exercise your DS is doing OP, but the only thing that totally cured my sciatica pain was using the crosstrainer in the gym. It is low impact so doesn't jar and I was going forwards for 10 mins then backwards for 10 mins increasing the tension levels gradually. Building up to 20 mins each way and alternating between high and low tension levels. I think the going backwards was key, not sure why.

I was in agony for two years, crying just getting out of bed, couldn't sleep used to wake with the pain when I moved in my sleep, painkillers didn't touch it but in just two weeks, going daily on the crosstrainer, the pain was virtually gone. In fact I was only pain free on the crosstrainer in the first few days! I kept that up for 2 years 3/4 times a week and it's never come back despite not going to the gym regularly over the last year. I got a home crosstrainer but it didn't work as well as the heavy gym ones.

I have disc degeneration in my back and also started using the lower back weight machine (sit down one) to build my lower back muscles which was better than using free weights as was in the correct position and couldn't over do it.

Worth a try if DS has not already tried using the crosstrainer?

I wouldn't have believed such a simple thing would have the effect it had, if I hadn't experienced it myself!

OP go private.

Our DS is under Sports Medicine , and NHS Paediatrician.
We were told that his growth spurt had created difficulties for his muscles and he was prescribed exercises.

As parents we had niggles and have literally scraped funds together to go private ( we literally have small change to our name at the moment ).

From an MRI which they expected to find nothing they have detected stress fractures in his lower back.

He has been in agony the past 2 years and it has been heartbreaking to witness his pain.

He couldn't go to school today because his pain has been so bad.

He absolutely loves exercise and sports so emotionally it is really tough .
I really empathise with you.

I'm so sorry to hear this - my (very sporty) DD19 had severe sciatic pain from 17. Her physio wouldn't do anything until she'd seen a doctor. We are really lucky in that we did have private cover and she was seen by a great consultant who does NHS work at the Royal Marsden. In her case it was caused by a stress fracture in the spur of the vertebra scattering debris which then sat on the sciatic nerve. Stress fracture almost certainly caused by too much sport. SHe took a gap year and had surgery to clear out the debris and remove the disc and fuse the bottom 2 vertebrae together. Two days post op she stopped taking the morphine as she said she was in less pain than she'd been the previous 2 years. If you could afford to see a really good consultant privately they might be prepared to transfer you to their NHS list afterwards. If you can make any headway then might be worth considering a gap year.

A few practical points - get a letter from the GP to tell school so that he can ask for adjustments for his A levels - mine got unlimited rest breaks and a private room so she could lie on the floor and had her pain meds on tap (had to be given to the invigilator during the exam). She also had an adjustable desk so that she could sit or stand as she found more comfortable.

It might be worth his having a chat with admissions tutor for his course to set the scene as pain can have a negative effect on A level results and it helps if they are aware of the situation (offer a copy of the GP letter and any correspondence with hospitals/scans etc). We found this out the hard way and reapplying grades in hand she emailed admissions tutors first and found some were really helpful and sympathetic and got some surprising offers where on paper it didn't look as if she would get in.

DD found that the best pain relief (although it can make you drowsy so isn;t ideal in an exam situation) is voltarol in suppository form. SHe baulked at first but eventually tried it and was converted. It is prescription only but shouldn't be a problem for the GP to prescribe it.

Get him to join Benenden health tomorrow, it's about £13 a month, in 6 months if he needs surgery he can have it done privately as well as any scans or physio he may need. I know 6 months is still some time away but waiting for the NHS will be longer. Has he tried a TENS machine to try & block the signals from the nerve that is causing the pain?

I didn’t want to post as seems like an actual injury issue with mris and such; and you probably don’t want to hear what I am going to say.

The poster above mentioned pilates so I will add to the vote. I had sciatica from a tipped pelvis, and pilates 1-1 with an experienced practitioner realigned that which changed the shape of my spine back to normal. I don’t know whether that’s applicable with an actual disk injury as my teacher would maybe be really nervous about that.

I would say generally when it comes to rehab you really have to go back to basics. I had to stop all other forms of exercise including yoga because to realign the skeleton means you have to realign all your muscles and for me that meant loosening off certain muscles and tightening others to help tip the pelvis back into place.

I think you might have to come to terms with the sports degree being on a non goer in the short term. The aim for his life long health and well-being is surely to recover and be pain free. I considered my slipped pelvis to be a quick fix as it was corrected in 6 weeks of physio, but I still had to be really careful, limit other activity and continue physio for another 6 months before it actually stabilised enough to not slip back. This sounds more serious. And whether it’s surgery or physio I don’t think 6 months sounds realistic to get back to elite sporting level. You might have to help manage expectations. I hope I am wrong though. Wishing your son all the best 💐

Not the same but my lower back is ruined by countless lumbar punctures and reformer Pilates is the only thing that consistently helps it be less painful.

Just to echo what others have said.

It is very likely he will need to take a step back from the sports degree whlle his MSK issues heal.

We have been told as parents that DS will need to sit with the frustration and allow time for healing- Specialist has warned that otherwise he risks long term injury , and it will impact his ability to do and enjoy sport at all in the very long term.

Encourage your DS to not let this define him.

As a mental health practitioner i have met s few males who have become chronically and clinically depressed because they could not accept or adjust to the change in their circumstances.

Encourage him to think about his other strengths, and what positives he has in his life , what things he enjoys, supportive friendships etc , to help him build some healthy ways of coping.

They may have limits on pre existing conditions?