New Member - On the downward spiral again

[Swany]

Greetings! I'm really glad to find this group.

I have had back issues since my late 20's (I'm 45 now). My "pattern" is very predictable with an occasional surprise here and there. I never injured my back (that I can recall) but started having left hip pain in 1990. After having what seemed like every test known to mankind, I was finally diagnosed with a severely herniated disc (L4/L5) made worse by a congenital spinal stenosis. Apparently I have an abnormally narrow spinal canal which makes even a mild herniation cause pain. The thing that FINALLY got me diagnosed was that I kept telling the doctors that I thought it really odd that when sitting, if I tipped my head down, the level of pain in my hip shot up orders of magnitude. Even today, I can gauge my "level" of degradation by how much it hurts to look down. Almost always my biggest issue is hip pain. Occasionally I get the “my back kills me for the first 5 minutes after I stand up” problem, but that quickly is followed by excruciating deep hip pain.

After the diagnosis I went the route I'm sure many of you did. Pills (anti-inflammatories, nsaids, various painkillers, eventually steroid injections and then surgery in 1991). Nothing really helped for very long except the surgery, which was a percutaneous discectomy. This procedure seems a bit rare (several doctors years later never heard of it for backs). Basically I was told that a hollow needle was inserted into my back (while I was awake and guided by live X-ray) and then a "roto rooter" like thing ground up the offending disc material which was sucked out through the needle. It was quick, painless, and I walked out with a bandaid on my back. My pain was all gone and I was a happy camper for about 10 years.

So ten years later (2001) the same set of symptoms started coming back, but this time I knew what was going on. I had moved, so I started over with new doctors, but they immediately saw my L4/L5 issue and started the standard treatments again (drugs, steroid injections). This time the steroid injections seemed to cause the pain to increase instantly. I can only describe it as added “pressure” and more nerve pain. This time I started having the bottom of my left foot going numb. Then one night in 2002, I tried to stand up and had what felt like a 6” steel rod jammed into the middle of my back. This pain would not go away and I nearly passed out. This episode recalibrated my personal 1-10 pain scale (on the old scale I’d say this was at least a 40!) I went to the ER and demanded they cut me open now or shoot me, saying “I cannot take even 5 minutes more!” So they injected something in me which caused me to not even remember the 3 hours I had to wait until surgery. This surgery was “successful” in my eyes. I woke up and had absolutely no pain. Recovered well and went back to normal life, although I was very “protective” of my back, trying not to overexert and lift with my legs, etc.

Five years later (2007) almost exact same story as 2001/2002 except things progressed more rapidly. Same pain, same meds, same injections, same surgery, except L5/S1 was trimmed too and some bone removed to give the surgeon “a better view”. Same great result except I had a lot of groin numbness when I woke up. This freaked me out for a long time, but after six months the numbness was 90% gone.

This brings me to 2010 where the cycle is repeating once again except now it is my right hip that is hurting an my right leg and foot go numb when I stand for more than five minutes. I have an appointment in two weeks with the same doc who did the last two surgeries.

I am looking for other options. These discectomies seem to work, but not last. I have refused fusion, thinking I was too young (I heard after years it can cause discs adjacent to the fusion to blow out due to added stress caused by losing shock absorption from the fused area).

An artificial disc seems like a better permanent fix than fusion and of course would mean the troublesome discs would be pulled out. But I am a bit nervous because it is “new” and nobody has stomped around for 40 years with one (and I hope to need it for at least that long). So I am looking to educate my self and make the best decision on what to do, where to do it, and what doctors to have involved. I should add that the "when" to do it is a very big issue on my mind. Medical discoveries happen every day and if I can hold out as long as possible, maybe I will end up with a better long term solution.

To be honest, I am starting to be OK with the pain, even though it is typically Blue to Indigo (see next paragraph) every day now. This seems crazy to some, but to me it is a known quantity, I can still walk, and frankly I get used to it. Of course, I wish it gone, but I fear going from the frying pan to the fire. My brother has an almost identical story, except he had “failed back surgery”, has electrical gizmos under the skin, hobbles around with cane, and is much worse than me. So to me, I am not so bad... yet.

For fun, I now use a color pain scale instead of the typical 1-10. Pain starts at Red and moves up to Violet (ROYGBIV) with the occasional flash of white, which is the worst.

Thanks in advance for all of the advice, support, help, and guidance I expect to get here.

[Harrison]

Thank you for your eloquent introduction! And you ROYGBIV reference is really interesting and maybe helpful to others. but I am sorry what it means to you! I hope you will find a "0" in your pain -- would be the color white?!

I'd be happy to catch up with you by phone in the coming weeks. I hope we can help you in this part of your journey...