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.

1 - Pilates. Another vote for pilates - saved me. Iwas supposed to have major surgery and end up in plaster cast for six weeks, until a physio at the same hospital recommended I try pilates first. Again, not the group class at the gym, but at least a few 1-2-1 sessions with someone good.

At the very least they can work with the issue, maintenance of muscle strength, and protect his back from further issues.

2 - Nerve Flossing. Meanwhile, pp mentioning the cross trainer sounds like a homemade version of "nerve flossing " which might also be worth a look. Can being really great.

3 - b12 - agree, could be making it a thousand times worse. If you get offered b12 injections/ high dose, make sure he takes a good B vitamin complex, you need them all together. In fact there's no problem in taking that anyway, after the test is done, as it is very important for nerves, both in dealing with pain, and mood. Look for an "activated" version.

4 - one of my children had intractable gut pain, which began with a horror of a gut bug. I starting reading, and found that the brain/cns can end up with a broken pathway, where it just keeps saying there's pain, even when it's no longer required. This is where things like pp's app come in. I suggested EMDR to his psychologist (who was helping with school challenges). She had never used it for pain, but it resolved the problem in one session, after a year of acute pain.

Look up EMDR, turns out it IS being used for pain.

If I think of anything else, I'll come back.

(I'm just an ex medical publisher, who has also worked for a neurosurgeon and a pain physician in recent years, and had family experience as above. But I don't think I've recommended anything that does not work, and caveat emptor and all that).

Obvs the key is the MRI results. He could have a bulging disc pressing on the nerve or a bone spur that's pressing on it. If it's this then a steroid injection will ease the pain and it should dissolve. If it's bulging disc he could try an osteopath, they will ease it and give exercises.

Or it could be spondylolisthesis, which again a steroid injection will help.

i hope you find some nuggets of help in all of this. Some brilliant suggestions to look into. I just wanted to add that I do Pilates twice a week with two separate instructors. I was doing one session and then added another mid week and the difference was phenomenal. Different exercises and that extra session sorted out my niggling back… as while I had no sciatica I was having problems with my si joint and felt I couldn’t stand up straight. When walking I had to stop and stretch and twist to loosen my back off. It’s fixed now. I’m so relieved. I was a bit frightened it would be there forever. But from that and the sciatica I know it can change and is short term. It is effort going going out twice a week to do a class and I’d rather sit on the sofa for an hour… but I make the effort and go.
Make sure the Pilates instructor is well qualified. Don’t just use a fitness instructor at a regular gym class. Mine are both physio trained. They constantly check our positions.
As a note I tried yoga too and was a bit horrified about the brutal stretches and straight leg poses which could have set it off. So be careful with who you choose. let us know how you get on.

Your poor boy!

Weirdly I had quite a similar experience. I tore my hamstring in 2018 and was on crutches then had physio for that. It took ages to heal and it seems as though that aggravated something and I got exactly the same symptoms as your son. Pain from lower back around hip and to toe. Numbness etc.

Because I'm almost 50 and no athlete I haven't been pushing for a solution but I am absolutely sure I can feel the part of my back that is causing this. I went back to see the physio who has given me orthotics to try and adjust the way I am walking and that has helped massively. I think post the hamstring injury, I changed my gait slightly and that has affected my back/hip/leg.

Also weirdly and slightly coincidentally I had a health check that picked up I was low in folate and though ok in B12 they felt slightly on the low side which was giving me Macrocytic anaemia quite badly. I've been taking folic acid plus a B12 spray and I must admit, my tingling/numbness has almost disappeared.

I didn't link the two till the poster above mentioned it.

Good luck with the MRI. I would consider seeing another specialist physio perhaps one linked with a hospital in the interim.

Btw it took about 3-6 months for my blood cells to stop being so large and come back to normal size so if it is a deficiency, it can take some time to fix it and for the symptoms to stop.

Really hope you get to the bottom of it soon.

Been through this with DD. MRI is key. He may need surgery. If nothing showing, pay for private high quality physio (NOT NHS). PM me if you like as DD ended up having spinal fusion surgery. Good luck.

I had excruciating sciatica following my back ‘going’ and it can be unbearably painful, I have total sympathy. I saw an NHS physio who got me to arch my back backwards increasingly strongly over their sessions and this method caused a big relapse. I was a mess. I couldn’t sit, I walked with a limp and I could’t bend to sit in a car or lift my little kids. I got recommended a physio privately whose approach was different. He sent me to get a scan that showed an L5/S1 disc bulge. Essential to have this scan so that treatment could tackle the right problem. I am cautious about recommending treatment as everyone is different so please I do realise this is a very personal journey, it can feel lonely too, but I had the following and if it can help anyone that is a plus. First an amazing positive mental attitude from my physio who assured me I would be pain free and was so positive about moving and helped me overcome my fear of movement. Second hands on massage to help free muscles that were in spasm constantly in response to the disc bulge and a large part of the continuing sciatica. Stretches for these surrounding muscles including my leg muscles. Gentle rolling along the spine to try and get some movement. Barely moving at the beginning but gradually freeing up the spine. It was six months before I felt back to myself, limp gone and relatively pain free. Then it was to maintaining my back health via various books and Stott Pilates. My Pilates instructor really understood my issue and had great training in how the body works. I have kept myself pretty much pain free for ten years. I see the warning signs and know movement is the key and what can trigger it. Having the right specialist you are confident in is so important. I hope DS can be pain free soon. Keep positive.

Hi everyone

I've logged on this morning quickly before work and I feel blown away by the empathy and care, and all the ideas for us to think about. We've been bounced between (disagreeing) specialists for years, yet today I actually feel there's hope and we have options. Thanks so much - this is Mumsnet at its best.

I need to work so can't thank you all individually - sorry. But I want to pick up on a couple of things.

Several posters mentioned about DS's A levels and whether he'll be able to do the sports-related degree. I wasn't clear enough - apologies. DS is in a gap year, working. He has his (excellent) A level results and an unconditional offer for this degree course. It is a non-sport subject he's very interested in but the degree looks at it through a sports lens - so he won't be required to be active as part of the degree. So he can still go and really wants to. He's pumped about the sport offering and facilities at this uni, and I just want him to be able to grab these opportunities with both hands, not feel like a bystander. It looks like he may not be able to do that immediately, but maybe if we can get this resolved, options may open up after that.

Interesting points about Pilates versus yoga. DS did some yoga on Tuesday and that may have aggravated it this week. I've told him this morning to STOP doing yoga! I've also quickly shared a few things with him from this thread, like getting booked up to get his B12/folate checked, and trying the cross-trainer when he's next in the gym.

Thanks so much to those who shared surgery stories - heartening to hear this has resolved your/your loved ones' issues. DS's chiropractor told him he wouldn't be considered for surgery because of his age. But what he's experiencing can't go on for sure.

I've asked DS to call the NHS orthopaedic team today, when he has a lull in his work, to ask if his MRI report is through yet and if they would consider sharing it with him. At least we could then pay someone private to look at it earlier than a month away.

Thank you to the poster who flagged the importance of safeguarding DS's mental health and him defining himself in ways other than sport. I completely agree, and this worries me somewhat about DS going to a sport-heavy uni. But we have talked openly about this, and he has said that if anything, the facilities there (e.g. swimming pool on his doorstep, incredible gym) would support his recovery. He has interests outside of sport, and as I said, his core degree subject isn't sport. So there is more to him, IYSWIM. But you're absolutely right; sport mustn't define him, and we'll keep that in mind.

So many things to think about and look into. I need to work now, but thank you all so much again, and I'll dip in again when I can. (And @Biscuitsforsupper, depending on what the MRI shows, I may well PM you - thanks for the offer.)

Thank you, @LibiB. So pleased you're pretty much pain-free now after what sounds like an horrendous experience. Great advice. Pilates is sounding like the go-to! (I think the delay of COVID then seeing the awful NHS sports injury consultant made it worse for DS too.) Must work!

Some great advice here!
Another thing to consider would be a really good podiatrist- one who specialises in musculoskeletal issues. Really helped my mum when she had bad sciatica. (She hadn't injured her hamstring though - but worth a thought)
Poor lad - i hope he can get help

Hi, I’m so sorry to hear about your sons pain.
I have struggled with sciatica for three years on and off, it’s excruciating.
Yoga helped a bit but the pain always returned.
However, I started swimming lengths 6 weeks ago and it seems to have actually fixed it!
I was advised to specifically swim front crawl as breaststroke is apparently very bad for your back.
After starting small, I now swim 32 lengths twice a week and it’s changed my life already. I didn’t realise how much pain I was in. It’s so limiting.
If your son hasn’t tried this I recommend it.
Background: I was told by my osteopath that my sciatica is caused by a curvy lower spine and the high impact exercise I was doing, running, had damaged my back.

No one should have to live with pain. I hope this helps.

carriedout no there are no limits on pre existing conditions, just time limits for NHS appointments, if you can be seen in under 3 weeks & treated within 5 weeks then they don't pay.

He needs to see an osteopath. Honestly, I had really bad sciatica for ages. I could hardly walk and they made it a lot better in 2 sessions!

@DaringDIYer - I'm so pleased that A levels are done and dusted for him - one less thing to worry about. If he hasn't already then he should call the uni accommodation office and explain the situation as they should be able to prioritise him for a ground floor room. Some unis open the lists to medical cases before they open them more generally.

I'm not sure that his age is necessarily a contra indication for surgery - DDs consultant said that she would have been treated under the NHS but it would be a much longer process. I'm happy to DM you his details if that helps - he's one of the leading spinal surgeons in the UK and also a chiropractor so took quite a holistic approach (and has an excellent bedside manner with teens...).

I have a back issue like this and I have to avoid anything like sit ups crunches and definitely anything that extends my back backwards, like the cobra yoga pose. My back was as your son describes, I had four discs blown out and a narrower spinal canal than I was supposed to. I was getting neurogenic claudication when walking for 5m. I researched my options and requested an x-stop decompression. Did that and now it's a lot better. I still have to be careful though, no yoga, no backwards extensions, no jogging or high impact exercise.

THIS. Came here to post exactly this. If he is willing to accept that the pain is neuroplastic he can heal from this. It sounds cuckoo but it truly isn’t. I have come through my own issue with chronic pain doing exactly this stuff.

Yes!! It helped me with occipital neuralgia too - most painful pain I’ve ever experienced except labour.

Thank you for this info.

Go private. The longer it lasts the less surgery will help

Yes go private.
Also i agree with look ng at EMDR and psychological therapy and/or DBT. Do not underestimate the power of the mind to perceive pain. Good luck

Very, very similar story to @Kyse. Sciatica down one leg with a limp from the age of 16

@DaringDIYer

Its lovely to see that your thread has inspired hope

I mentioned about not letting it define him both with my work hat and my mum hat on .

Its amazing what people can cope with when have lots of "tools" in their box.

Young people are difficult from fully fledged adults in that they have a higher rate of recovery from chronic pain conditions.

Wishing you and your DS the warmest of wishes..

I’ve been thinking about you and your poor son, and actually remembered that I herniated discs and ended up with terrible sciatica, and crawled out of bed after 10 days, to a osteopath, and he got me walking again, so if you haven’t seen one, maybe go, as per pp.

Meanwhile, I’ve been trying something new for my back/leg, and it’s already making a huge difference (over 2 days). It sounds really dodgy because I found it in Short Videos, but they have a few YT videos too.. they’re called Block Therapy (based in Canada I think), and essentially it’s about working the fascia, which can become a huge problem with long term injuries. I was already aware of the concept, and just needed to find an example. Anyway, have a look and see if he can tackle one of their holding poses. I also found some videos of the nerve flossing I mentioned before, specifically for sciatic nerve issues.

Hi. I wanted to share an update - and request some more advice/support, if anyone has any, as you were all so helpful when I first posted in April.

So the good news is that DS was able to get his orthopaedic team appointment brought forward to late April. They had his MRI results through, very clearly showing the root of the problem, which was described to us as "a far lateral disc protrusion at L5S1", which is "protruding into the exit frame and compressing the nerve". (Scan images attached.)

In theory, this sort of problem should get better itself, but DS is clearly one of the one in 10 for whom this doesn't happen. So the orthopaedic team at our local hospital have referred DS to a specialist spinal unit and he is due to see a consultant there in early July. DS is likely to be offered a hydrocortisone nerve root block injection first, and if that doesn't work, decompression surgery. So DS is at least on a (slow!) treatment pathway now.

The not-so-good news:

(1) DS is struggling (more below), so I called the spinal unit yesterday to find out if there's the remotest chance his appointment can be brought forward. Nope. And I was also told that their current treatment times would mean that DS couldn't receive his first treatment before he goes to university in late September. Where he's going is not easy to get back and forth from for treatment. So we have a timing issue with getting him treated on the NHS before he goes to uni.

(2) Secondly, DS had a breakdown over it all at the weekend. Three factors are combining to make his day-to-day quality of life miserable: (a) continuing pain, albeit somewhat suppressed by taking prescribed amitriptyline; (b) the amitriptyline making DS feel emotionally flat, unmotivated and as though he's "lost half my personality"; and (c) not being able to do much sport/exercise, which he's thrived on since his primary years for keeping fit, social contact, and I guess the 'happy' chemicals it generates. The orthopaedic team have said no running, nothing with impact - just cycling and swimming for now. DS went for a swim Sunday but came back miserable because he felt so unfit. He is so low (he said he doesn't see the point in being here if this is how life is going to be), and I am worried about packing him off to university with this unaddressed, with loads of sporty types under his nose and without his family support bubble around him to get him through his lowest moments. I had my big, bearded man of a son sobbing his heart out – this is just awful.

(3) I have enquired at the spinal unit (which is a private unit contracted to provide some NHS services) about what it would cost to go private, assuming we're talking nerve block and eventually possible surgery. The initial consultation (~£200) and a non-theatre nerve block (~£700) we could afford. An in-theatre nerve block (~£2,500) would be a stretch. But if decompression surgery (£9,000-10,000) is needed, I have no idea how I'd afford that. And the NHS team told us if we so much as book even a 30-minute consultation privately, we will be removed from the NHS pathway and would have to go back to the beginning of the process if we wanted to reengage with NHS treatment again (by the time DS sees the consultant in July, the process will already have taken eight months since we saw his GP in November). We are not allowed to flit between the two (which I understand, but I thought we might at least be allowed to pay for one initial consultation without being booted out of the NHS system).

Moreover, the local orthopaedic professional DS saw said the outcomes by 12-18 months post-surgery aren't even that great; barely an improvement. This seems unbelievable to me - why would the surgery be done so much if it doesn't solve people's problems? I've tried to find more data on this online but haven't found any yet. Does anyone know much about long-term outcomes for lower spine/disc surgery? If you/your loved ones have had it a while ago, are you still feeling better from it now?

DS's dad doesn't work (we're not together). I have savings for DS to go to uni but if we spend these on surgery, he'll struggle to afford uni. The only other thing I can think of is remortgaging (with current interest rates - yikes). Or there is an outside possibility I might be able to sell off a bit of my garden but I have no idea if that's an option without spending months looking into permissions, etc.

I am desperate to get DS sorted. It's as though his life is on hold. He is so bright, thoughtful, kind and respectful, mature for his years - an absolute gem. He has so much to offer and I want him to be able to grab life (and uni) with both hands but he's a shadow of himself at the moment.

I know this is long - thanks if you've got this far! I just felt the need to share an update as you were all so supportive before, and one of you might have an idea of what we could/should do next, or what you'd do in the circumstances, that we haven't thought of.

Thank you.

His MRI is very similar to mind although I tend to have 4 discs all doing it. I would recommend avoiding a laminectomy if it's offered and ask for an X stop decompression if they think it's necessary. It helped immensely but I still have to be very careful and it will change the type of exercise he can do, no high impact, nothing where his back is arched or he lies on his front, no sit ups under any circumstances.