Comment by slr555 | Hacker News Reader

Comment by slr555 | Hacker News Reader

The thing is, when you've seen one back problem, you've see one back problem.

The spine is a maddeningly complex assembly of bone, nerves, cartilage, articular surfaces, vasculature, packed tightly, subjected to immense forces, and articulable is many directions. It is a miracle of evolutionary engineering and a miserable failure. We needed to crawl longer before we stood up and walked as a species.

I have been through 2 spinal fusion surgeries. First, L4-L5, L5-S1. Then L2-L3, L3-L4. One surgery was nine hours the other was eight. Recovery was approximately 1 year for each surgery to complete return to maximum function. It was the hardest thing I've ever done. And news of the need for a second surgery almost crushed me.

But...

I am virtually pain free for 3 years now. My activities are virtually unlimited. No boxing. No golf. Oh boo hoo. I can hike, scuba dive and travel.

Your mileage may vary, but the real question is why? The quality of both surgeons and diagnosticians varies widely across institutions and geography. I am fortunate that I live in a city with the best orthopedic hospital in the US and my surgeon is world renowned in the area of spinal surgery.

It took me ten plus years to get the right diagnosis and find the right clinicians but when I did they repaired my spine to provide me maximum function and pain relief but it is not a new spine. It is never like new. But it'll do what I need it to do.

For anyone in pain. I hope and pray you are relieved of it. Search for the professionals who really know what the fuck their doing and GET WELL!!! Be a zealous and merciless advocate for your own healthcare.

I'd love some help. How did you find someone who could actually give you some sort of prognosis/diagnoses? Mine just say either "more PT" or "here's some pills." Neither work. My disc is budged and it seems like moving the wrong way will trigger 2-3 days of intense pain and immobility. No one seems to offer any suggestions on how to fix it. Is it fixable? I don't know...

P.S. the back pain industry is a sham, but there are a few of us out there that legitimately need help, but can't get it due to the opioid epidemic and snake oil salesmen.

My number one advice is to not accept "No". Someone out there has an answer for you. Keep asking, educating yourself, searching.

Dr. Srinivasan in Seattle did my spinal fusion. She's the best. http://seattleneuro.com/about_dr-srinivasan/

If you are trying to find a neurosurgeon near you... Ask Srinivasan for a referral. Or find other doctors that learned, practiced, taught where she did (birds of a feather).

I'm all for being relentless when searching for answers. And then for relentless researching and checking them.

It is important however also to hear the "No", as the article explains: Most doctors would say "No" when it comes to their own backs. There are certainly a lot of spine doctors out pushing procedures but anyone who is on the desperate search for a solution likely also heard from another doctor the word "No" and did not properly listen. Understanding the "No"s is important to weight the alternatives and risks.

Word.

I've been sick (chronic life threatening illness) my entire adult life. I've done some very stupid things, knowingly and unknowingly. And a handful of my doctors, care providers have harmed me. But what else you gonna do?

I've also had severe back pain that got worse over the years. Finding solutions that worked for me required lots of trial and error.

Now comes my second most important piece of advice:

Everyone must have their own patient advocate. To fight for you, to keep track of what's happening. And to keep you honest. Self assessments are notoriously unreliable.

I went through the PT option for many many years. It definitely helped, but never provided lasting relief. Finally, after a period of nearly a year without any pain relief at all (I now have extreme empathy for people who suffer chronic pain), a microdiscectomy/laminectomy resolved everything. After 2 weeks I could go back to work, after 3-6 months I felt fairly normal, and after a year I felt better than I could ever remember.

I kept seeing experts, getting more opinions, and aggressively pursuing all options. Eventually I was referred to an amazing back doctor who took me through all my options - first PT, then a series of epidural cortisone injections, and finally surgery.

Worth noting though, I did a ton of research about failed back surgeries (it has its own name - "Failed Back Surgery Syndrome"), and while you can put the odds in your favour, there's no sure thing. However, getting a highly rated doctor and surgeon working together to get a very accurate diagnosis, combined with the latest surgical techniques will maximise your odds of success. The microdiscectomy with metrx is pretty incredible for being minimally invasive and keeping recovery time as short as possible.

I've been a back pain sufferer for most of my adult life (I'm 45, this started at 20) after being attacked and having my back bent badly backwards (with a knee placed in the small of my back). I know how you feel in terms of wanting help, so here's my (anecdotal!!!) experience.

I'll spare you the full story, but I've tried just about everything - Chiropractor, Osteopath, Yoga, Pilates, Exercise of all sorts, Physio (NHS in the UK), etc. Nothing has really helped - more paper the cracks than fix the wall.

Very little worked, and the pain has increased in frequency and intensity over the past 10 years or so - culminating in a prolapsed L4-L5 disc, and some nasty sciatic pain episodes around 7 years ago. The NHS treatment (pain killers and exercises) didn't help. I did all the exercises they gave me, and they did nothing. They discharged me without any improvement.

Three things HAVE really helped. Firstly, learning Alexander Technique [1] which got rid of the sciatica (and the need for daily pain killers) in a couple of weeks. Much later (in the last 6 months) some really specific exercises targeting the multifidus muscles [2], and reading "The back pain bible" [3] was eye-opening - having a good idea of what's going on in the back helped, and there were some exercises in there which with hindsight did help. I read somewhere (can't find it now) that once you lose the tone in your multifidus muscles, you don't spontaneously regain the tone/strength in them; other muscles cover for them and then you're in trouble.

At the end of last year I was at my wits' end - pain all day every day, no-one understanding what was going on, and being told by the chief physio of my NHS trust that "this is just how life is now" - despite me being the kind of obsessive person who actually does the exercises I've been set. So I decided to try things for a month and see what helped - some things did, some didn't (including a very expensive piece of mobilisation equipment). And the multifidus exercises (with leg weights) seemed to just 'switch on' the rest of me, allowing me to maintain good posture and protect my spine. I'm definitely not fixed yet, but I'm not in pain all the time - in fact I had a nearly 3 week period without a twinge last month, which was like being on holiday away from the usual hell. I really think the weakness in those muscles is the key to me actually improving for the first time in a decade (they were pitifully weak initially, and I'm sure there will be other areas where that's true). Maybe something that specific could help you?

For context, I'm 6'1 and around 90Kg with a fairly muscly build - I -look- fit and I'm certainly not overweight, but there's more to bad backs than appearances.

Anyway, hope that helps someone.

[1] - http://www.alexandertechnique.com/ [2] - https://www.amazon.co.uk/Multifidus-Back-Pain-Solution-Exerc... [3] - https://www.amazon.co.uk/Sarah-Keys-Back-Sufferers-Bible/dp/...

I am sorry to hear your in pain. I know how debilitating it can be.

Hospital for Special Surgery in NYC is consistently ranked number 1 in orthopedics in the US. They have spine surgeons and neurosurgeons who excel in implementing mechanical solutions. Perhaps I should have mentioned first that the pain clinic at HSS is fabulous for diagnostics and they are extremely conservative when it comes to opioids.

Getting a proper diagnosis is essential. I was diagnosed incorrectly for years before learning my underlying problem was a spondylolisthesis. Appropriate imaging studies (x-ray, MRI, CT, myelogram as needed) read by superb radiologists will get you a clearer picture of what is really going on.

Surgery may or may not be required. It all depends on the cause. If your doctor recommends diet and exercise/PT be relentless with your implementation of the program (being mindful of what your body tells you).

Finally I would have to say that my sister who is an MD helped me realize one very important thing. The susceptible human back gets "tweaked" from time to time. If your back goes into spasm for a couple of days once in a while (and deelowe I am speaking more generally here than of your specific circumstance) you could spend tons of time running it to ground, when it the long run a form of radical acceptance may bring greater peace of mind. Accepting - I am a person whose back fails me from time to time forcing me to be debilitated for a few days may be less anxiety provoking and frustrating. Good doctors can help you decide what option is best. As Aaron Sorkin said in the Steve Jobs meeting, and I think it applies to all of us, accepting "I am not well made" can be useful to all of us.

Would love to learn more about the activities or structural issues that led to getting the surgery. Also, what were the types of things you heard over 10 years (or treatments you attempted) before getting the surgery? Basically, would love to hear your story / more details here - thanks :)

My ultimate correct diagnosis was a cluster of a few interrelated issues. Bilateral defects in the pars interarticularis around L4-L5 led to chronic degenerative changes at that level as well as a grade one spondylolisthesis. This was coupled with sclerotic changes in a spinal canal that was congenitally narrow leading to impingement.

My earlier incorrect diagnoses included many of the usual suspects. Bulging disc, piriformis muscle entrapment/impingement, muscle strain, somatization etc.

Treatments attempted included injections, muscle relaxers, tens unit, NSAIDS, opioids, PT, and other things like spinal cord stimulators were recommended but not implemented.

2011 and 2013 fusion, laminectomy, foraminotomy, discectomy, placement of hardware.

And the story has a happy ending. Scuba, hiking, touring all successfully re-integrated into life. Hopefully it will last a lifetime but all this taught me that every pain free day is gravy.

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