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.

I second the recommendation for the crosstrainer. I have (or maybe had?) a herniated disc in the same position and the pain was just unreal (I have given birth several times with zero pain relief, this was so much more painful).
i tried acupuncture, painkillers, chiropractors, osteopaths, referrals to consultants, pain clinic etc etc etc. Now I use a crosstrainer for 45 mins a day (it’s a lot) and the pain is non existent.
You do have to be really careful for the signs of CE, and also understand that looking after the digestive system can have an impact on pain in this region (constipation will make it worse).
I really feel for your son op, my child was injured through overtraining on an elite sports pathway too, and it was heartbreaking. I was quite cross about it for a while.

I herniated my disc when I was 16 and had horrendous sciatica. I was on so many painkillers and they barely touched the sides. I was referred for injections but when seeing the consultant he said there's no point and bumped me to the surgical list. I had my surgery around 8 months or so later and it changed my life. I was finally pain free 90% of the time (the 10% was when I'd overdone things and I'd have moderate sciatica for a day or two). Unfortunately my disc did reherniate around 5 years later and my mri scan showed a herniation at the same place along with scar tissue. I had a second microdiscectomy after a couple of years and I have been fine since, no pain at all.
If your sons issues been going on this long I don't even think the injections would do much, his disc needs sorted out or it will continue to press his nerve.
Has he visited his gp about his mental state? My mh suffered massively the first time, one day you're young and invincible, the next you're not and its hard. They wrote a couple of letters to the orthopaedic consultant explaining the effect it was having, not sure if it made it any quicker or not but worth an ask.

Facet joint injections helped me. Also a sciatic stretch. Sit on hard chair, simultaneously tilt chin and head back whilst lifting foot of sciatic leg to straight so knee and ankle make leg straight line in front of you. My problems are lumbar but what helped me may not be suitable for your son, I think tilting your neck back can restrict your neck artery so if he has blood pressure problems it’s not a great idea. Also at its worst there was no way I could imagine lifting my lower leg up and out in front of me whilst sitting. I hope he finds some relief

I had the same thing in my 20s, couldn’t walk etc. Had the surgery and was completely fine after. The injection thing did nothing. Push to get the surgery asap!

I had similar. It was pre MRI and back then, no one thought teenagers could get ‘slipped discs’ as it used to be called. I struggled on for a decade before my disc herniated. Luckily by then MRI was in common use and I was lucky enough to get surgery. I’ve been mostly fine ever since. Still a few niggles but at least the major sciatic pain has gone.

Is it sciatica or neurogenic claudication. I wouldn't do any exercises suggested until you are clear on this as backwards extension of the spine can really exacerbate NC

Ex medical secretary here. Worked in orthopaedics for years. My advice would be to ask the NHS secretary where the surgeon works privately. The private hospital can request the MRI (or the NHS sec can). See the surgeon with the MRI results and go from there. Scans will be sent over electronically. Just keep badgering before the appointment that they have been sent. Good luck.

Posted before under a NC, but I would think that will end up needing surgery as it's so similar to mine
Please please watch for cauda equina red flags
If you can, offer to take any last minute cancellations, I got a call asking if I could be there in 25 mins and that's how I got an appointment

Just re read your post
Before op - couldn't walk without dragging my foot, no feeling, excruciating screaming pain. No chance of exercise
That was 2017, I was back riding a horse in weeks, and today I just did a spin class and upper body weights. Ortho wouldn't touch me and mine was done by neuro who laughed when I asked if it would fix itself
My back gets stiff sometimes and I'm cautious not to do massive high impact stuff but I can jog/cycle/horse ride/weights etc

I had several, years long episodes of sciatica. What helped me was seeing a private, very experienced physio and getting epidural injections ( I'm not sure if that is what your son is being offered).

The injections gave sufficient relief to enable physio massage/manipulation and for me to work through a programme of rehab exercise.

I am so sorry your son is having to go through this. I really do hope that you can find the best treatment for him

Whilst waiting for the spinal team, you could see whether his GP could swap amitriptyline to nortriptyline or imipramine. They are not first line as more expensive, but often better tolerated and can work better.

Crikey you can see it in the scan can't you. Poor boy. I don't have any useful medical advice but I can totally understand how he feels. Even if you're fit, if you're not specifically swimming fit, you can definitely feel it in the pool.

I had IDD therapy for mine. It cost about £2k and I had to go 3x a week for about 6 weeks but it really helped.

@DaringDIYer OP, I am amazed and oddly comforted to find someone in a similar situation to us as it is so rare in their age range - DD is also 19 and massively struggling with sciatica for the past year and a half due to a disc bulge at L5/S1.

I am also a physio (specialised in spines for years) and can count on one hand the amount of times I’ve seen sciatica in teenagers, when DD developed it I was almost in a bit of disbelief. We are fortunate enough to have private health insurance so she saw a spinal consultant and had her initial MRI within a few weeks of onset. At that point he was certain things would resolve on their own with time and suggested a nerve root injection to help with the pain while the disc healed itself. She had this done and got temporary relief for a few weeks but unfortunately the pain then returned.

Now a year on, countless follow-ups, lots of physio/pilates/yoga, another nerve root injection, multiple top spinal consultant opinions from all over the UK, updated MRI , different medications all to no avail. The disc still looks the same, actually a bit worse and her pain is still there. We’ve run out of options and tried everything so now looking at decompression surgery in July.

Right from the very beginning her consultant had said that he didn’t want to operate on her - outcomes for disc surgery in teens are often poor with a high chance of needing further surgery down the line. This is due to the fact that although they are technically adults, their disc pathology is more similar to a child’s, therefore what is effective in someone older may prove the opposite for somebody DD/ your DS’s age. We feel at this point even thought the risks are very much there that we have to give it a go, she can’t live in pain forever. I just want her to be a happy, carefree teen again as she is a shadow of herself

We are very fortunate to have private health insurance and the most wonderful, caring consultant who has gone out of his way for us but even with all of this it has been incredibly difficult - I really wish you and your DS the best of luck, keep us updated x

i broke my back playing sport. Minor bones, but right in an area with a lot of muscle so I know somewhat of what your ds is dealing with. I feel very sorry for him.

Go private. NHS physio was useless. My mum paid for me to go to a rehab centre for 3 weeks and it is what fixed me. The equipment, the exercises and the aims were totally different. NHS dismissed me once I could get on and off toilet and in and out of bed as that was “return to daily function”

I also use Shakta mats, acupuncture and yoga and massage to maintain. Kind of funny considering I was a rugby player.

I’ve recovered fine and am back to competing in a different sport. Retired from rugby as picked up other injuries over the years and I was getting too old to play at the level I wanted to stay at.

Totally get your worried about university. However, I wonder what the sports recovery and rehab is like there? It might be worth getting in touch with them. If it’s Loughborough, then it’s got some of the top sports injury specialists. Worth exploring. He’d do well to join his sport’s team or club at uni and take evidence of his past success, and then work with their sports rehab to get back to competing again.

Get your worries about! Ugh I hate not being able to edit posts

For day to day relief while you find a path forward, I found a little tens machine helped immensely. You can get them on Amazon and you just put the pads on and stick the little control unit in your pocket. Certainly made my life more bearable while mine resolved.

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?

What orthopaedic person said is broadly correct. With caveat that surgical techniques improve all the time so surgeries happening now could be more successful than surgeries that happened years ago. Plus, your son is an individual not a statistic. I don't know the procedures well enough to comment on your specific son, but surgery mostly hasn't been that effective compared to other strategies.

Articles:
https://journals.lww.com/spinejournal/fulltext/2007/07150/surgical_interventions_for_lumbar_disc_prolapse_.8.aspx
https://www.bmj.com/content/381/bmj-2022-070730.full

People opt for surgery anyway because they are desperate, that's why surgery happens so often. Doctors want to help so they try.

I'm sorry about your son's challenges. I also got back issues at a young age. I can only recommend he keep trying different things.

I spent ages puzzling over this article then realised they combined cohort with RCTs & other study designs: which is why acupuncture looks so good, I guess. Tsk Tsk. Bad science.

Re surgery outcomes. When I had my surgery the system was to book several patients with the same surgery into one day, so there were 10 women on my ward, all having the same procedure. The other 9 women were obese and fairly immobile, possibly due to years of pain. Does the research allow for the physical condition of those having the surgery and the mental attitude towards recovery?

Fir me, surgery was nothing short of a miracle, but I can see for others it may not have been as effective.

Does the research allow for the physical condition of those having the surgery and the mental attitude towards recovery?

Short answer is stratifying results by age group or starting health condition is harder than you'd think, so not usually done. I started to try to explain why but it's too complicated (!) You'd need relatively large populations of young relatively healthy people to have the surgery or not, chosen at random, to get a confident answer.

Not sure what "mental attitude towards recovery" means, but yes = quality of life improvements are often monitored.

Definitely most procedures work well for people who start out in better health.
This is where clinical experience of the doctor comes in, and indeed is the foundation of "personalised medicine" : judging if an individual is likely to have more or fewer benefits than average.

I've little to no experience of sciatica OP but I do feel for your son, I was diagnosed at 26 with arthritis.

Has he tried a tens machine? One with separate electrodes and two channels not the maternity ones? I borrowed one from physio and then got my own. The reason I recommend is that they work by confusing the nerves by interrupting their transmission.

https://www.amazon.co.uk/Analogue-Operation-Self-Adhesive-Electrodes-Eligible/dp/B00MY1H8PI?source=ps-sl-shoppingads-lpcontext&ref_=fplfs&psc=1&smid=A3P5ROKL5A1OLE

I take a cocktail of drugs but basically pain killers, anti inflammatory and anti depressants.

I take amitriptyline, it is an anti depressant but is used to control chronic pain. Lots of people start it and give up because of the side effects. I was given advice to stick with it, when you start to take it there are no side effects, then you start side effects that get worse for about 2 weeks then improve for two weeks.

I use heat and cold depending on the type of pain I am experiencing.

I also do physio and I have splints from the orthotist. If he is limping then, as you said, his body will move differently and can cause more damage, an orthotist can create insoles for his shoes that may help.

Sorry I can't help much with his actual problem but I hope I have given some ideas on controlling the pain.

I'd get a bank loan or a payment plan from the private provider and just get it paid for. I know it's a lot of money and getting into debt is generally a terrible idea, but it would get him the treatment he needed and possibly next week.

As an experienced medical person you have probably come across many patients who ‘become their illness’, ie it becomes a huge part of who they are, and others who are really determined to get back to health. It’s not a judgement on either type, chronic long term pain is dealt with differently by everyone.

We now understand a lot more about how we feel pain so I would hope we would get more success stories as the medical professionals become better equipped and more knowledgeable about supporting patients to manage chronic pain, and recover better from surgery. This knowledge, linked with our improving knowledge around inflammation within the body and it’s effect on healing could be a real game changer.

Sorry your son is going through this. Is deferring uni for a year an option? Gives him more time for his treatment, especially if he ends up needing surgery. He could potentially earn some money during this year as well which he could put towards more physio, osteopath, etc. have to say I’ve found osteopaths to be much better than either physios or chiropractors.

DD19 has recently had S1/L5 fusion and is pain free for he first time in 3 years - it has been life changing for her and now she can look forward to uni. SHe had broken vertebrae spurs so needed surgery anyway to pick out the debris.

The best pain relief she found was voltarol in suppository form - has to be prescribed but I'd really recommend asking the GP for it.