L5/S1 - Twelve years after orig injury, now a REAL problem

[zarni]

Laid up doc - you are so right.

I got the MRI (got my own CD!) and it looks the same as last year. The follow up with the PA was disappointing - "Look, it's a SMALL bulge, and it's not affecting the nerves." Well, yeah, we knew that. No follow up, no ideas for future. I smiled, left the office, and had my come-apart alone in the truck.

What I did get from him is that pain comes from 1) Nerves 2) Bone/cartilage? 3) Disc 4) Muscles. The PA said that it was probably muscles. I had an issue a couple years ago with my neck (radiographs showed it to be exaggeratedly straight) and muscle relaxers TOTALLY did the trick. When I'm having one of the Big Bang lower back pain episodes, the muscle relaxers (I tried four or five different ones) didn't touch it. I'm having trouble accepting that my pain would be caused solely by muscles.

So, because the MRI doesn't show a disc impinging on the nerves, I don't really know what to do. A coworker's wife had what sounds like a similar story (extreme pain, but not all the time, and no leg pain) and had what sounded like a minimally invasive surgery that helped immensely. I'm trying to find more about what her story really was.

I know I sound like an irrational patient looking for a silver bullet. I'm not trying to be that way. I do want to understand where my pain is, and what is causing it. I'm working very hard in PT. But I'm scared that this "Big Bang" stuff will come back, and I'm scared to do anything like normal life. I need to do a road trip, but "what if" I have this pain come back? I'm living around what I call a one or two (0-10) which is perfectly okay, I've done that for years. But the 8/9 is not stuff I can deal with, and I'm scared because I don't know what causes it.

Obviously I'm going to find a second, third, etc opinion. I just remember why I gave up on finding help in the past - This was the same "Spine Center" that I visited ten years ago to see the pain management guy who gave me the shots that hurt and SO didn't help. PA yesterday suggested the shots again. I was not amused.

Off topic, we have a darling Appaloosa mare who is overdue to foal. "Overdue" is a silly term I guess, because 'normal' is such a wide range. But my wonderful husband has been checking her all night until about five in the morning, when I get up. Her name is Sierra and she could use some good thoughts from anyone inclined to think them.

[Gilbert P]

Hi Zarni


What does your radioligst report say?

I had surgery in Colorado after a few years of research. Only 12 weeks out still debating if it is going to work.

Keep doing your research and find a solution for your spine!

Gil

[laid up doc]

find a doc who specializes in pain management - did their residency in anesthesia, physical medicine and rehab, or neurology, and then a pain fellowship. they're the best trained to find out what your pain generator is. a physical therapist who is trained in manipulation/spine is best too. i found that the combo of such a pain dr and PT to be the answer as far as identifying the problem and most effectively treating me. unfortunately.... my poor L5/S1 has been torn too many times to heal, so i'm having surgery - after 2.5 years of workup and PT and suffering the majority of that time.

it's not easy... that's why so many people come here looking for support. that is the best advice i can give you - it's what i tell my patients... surgeons only want to help you if you need surgery.

[zarni]

I haven't gotten a copy of the report. Another neurologist did see it and that office says there's nothing to do surgery on. Yes, my correct step is to find a pain management doctor who can maybe find a problem. At this point maybe it is just in my head. I don't hurt all the time. My leg isn't weak all the time. It's probably just fear causing pain. I clunk like a bad transmission when I get up after sitting. I feel like my tailbone is loose or something! Sometimes the clunk makes it feel better.

I have not been trying to say that it is the bulging disc L5/S1 that is causing my pain. I don't know what is. I have an appointment with my GP tomorrow to try to find a PM doctor. One PM doctor that a coworker recommended has about a dozen really bad reviews from patients, so I really don't know where to start.

I walked down a flight of stairs yesterday, because I'm trying to convince myself that pain is just in my head. I am moving slowly today, and I am sick of it. I am almost ready to put up with the Big Bang pain again, maybe I can describe it better next time and it will strike a chord with a doctor.

[KanRunMo]

Your pain is definitely not in your head. I've had the sudden "big bang" pain. Usually mine lasts off and on for about two days. It probably is a "temporary" spinal spinosis where your muscles have pulled your vertebrae out of whack and are pinching a nerve. In my case, it meant that I also had DDD and at times herniated discs. The minimally invasive treatments for spinal stenosis might ward off the bad pain episodes for 5 to 10 years. The Texas Back Institute suggests the X-Stop but there are many others. My explanation is that the little insertion device lifts the vertebrae so that a nearby nerve isn't being pinched. Just because a Dr. doesn't see a pinched nerve at the moment doesn't mean it isn't or won't be again.

[laid up doc]

MRI findings do NOT correlate well w/ pain symptoms... this is well established and anyone who does spine (pain or surgeon) and is worth a damn will know that. if you MRI 50 people with back pain and 50 people w/o back pain, it would be hard to say who definitely had pain just based on the imaging.

radiologists vary A LOT in what they call - fwiw, my MRI is very unimpressive - some bulge and ehhh maybe evidence of an annular tear. my discogram, however, tells the story - big leaking annular tear and totally reproduces my symptoms. while i wouldn't wish a discogram on anyone (i've had 2) and canNOT say whether you do or do not need one... it and maybe in a few years some new MRI technologies are better at looking at where your pain is coming from.

bottom line - don't let people brush you off b/c your MRI doesn't look awful.

[KBear]

MRI findings do NOT correlate well w/ pain symptoms... this is well established and anyone who does spine (pain or surgeon) and is worth a damn will know that. if you MRI 50 people with back pain and 50 people w/o back pain, it would be hard to say who definitely had pain just based on the imaging.

radiologists vary A LOT in what they call - fwiw, my MRI is very unimpressive - some bulge and ehhh maybe evidence of an annular tear. my discogram, however, tells the story - big leaking annular tear and totally reproduces my symptoms. while i wouldn't wish a discogram on anyone (i've had 2) and canNOT say whether you do or do not need one... it and maybe in a few years some new MRI technologies are better at looking at where your pain is coming from.

bottom line - don't let people brush you off b/c your MRI doesn't look awful.

AMEN to that! I couldn't agree more. I got treated like a pain pill seeker for years because they just didn't see much on my MRI and then when they did, they didn't believe in ADR, wouldn't fuse me because of my age and still told me I shouldn't hurt. I seriously questioned myself if maybe I was crazy and it was in my head (just like you are doing). I had all the typical conservative treatments and just kept hurting. I was told more than once that 'we just don't know why you have pain' and/or 'there is no reason you should be in pain'.

When I finally arrived at Texas Back Institute, thinking that it was the end of the road and I was just going to be on pain management indefinitely, is when someone finally said yeah, we see something, lets get new imaging and another discogram and see. Let me also add that I had never seen my MRI and just knew what they had told me at that point (before TBI). The TBI Dr (who was a Physiatrist- pain management Dr) immediately saw DDD, but he ordered more tests, since my MRI was 1+years old at that point. The results of that didn't lie and I was diagnosed with a grade 4 tear, herniation, disc was black (dead), DDD, mild to moderate arthritis in facets.... I was beyond happy and mad about this (pissed that I had spent close to 3 years getting treated like a pill seeker), happy that I had finally been validated, I wasn't crazy and there was hope! I went on to have ADR and am now pain free and am so glad that I finally got the help I needed. It's hard to fight when you are in pain day in and day out, but it's so worth it in the the end. Don't give up, sadly this is too common where Drs blow people off and there is something wrong.

[Katie]

Hi Zarni,

KBear hit it square on the head.

Don't give up, sadly this is too common where Drs blow people off and there is something wrong.

So many of us have gone through the same thing and came out very well on the other side in the end by going either internationally or finding an exceptional surgeon near home, but that would take a lot of digging.

I experienced the glazed eye expression of many doctors who thought I was trying to scam them into getting narcotics, and heard the hopeless statement...we don't operate JUST for pain...as if it was just an inconvenience.

It turned out that I had a significant case of spondylosis (among other things), where my vertebrae had slipped ahead of the ones above, and until the surgeon went in, it wasn't apparent.

Above all, stay positive (no matter how difficult, and we know how hard that is) and find yourself some great doctors, not an armchair quarterback type who can't be bothered to look closer at your problem. It will get better if you believe in yourself and don't give up.

[laid up doc]

i was blown off for years... and i'm also a physician!!!

got myself to a physiatrist who does pain, and he nailed my dx right away. said my previous dx (SI joint dysfunction... for years after a fall) was pretty much a wastebasket dx, and he thought my pain was much more likely discogenic. he was right.

the above posters nailed the other points... and i will add that from the provider side of things - there are so many scammers out there that it's hard to separate real pain from addition at times. that's why you need to see someone who specializes in chronic pain and the spine - i don't, i explain this to patients ALL THE TIME b/c i'm not equipped to do the workup they need in my practice setting.

[KBear]

the above posters nailed the other points... and i will add that from the provider side of things - there are so many scammers out there that it's hard to separate real pain from addiction at times. that's why you need to see someone who specializes in chronic pain and the spine - i don't, i explain this to patients ALL THE TIME b/c i'm not equipped to do the workup they need in my practice setting.

This is so true, sadly narcotic addiction is a huge problem all over the United States right now (and probably world). My step mom is a family nurse practitioner that practices as a general family Dr. would. Even though in our state she can prescribe narcotics under the Dr. that she practices under, she doesn't. She will not at all and has made this a policy. If a patient needs narcotics they either see the Dr. she works under (and he's pretty picky about it too), or they refer them out. I know this is extreme, but in this litigious society, they have to protect themselves too. Right now for instance, one of my family member's extended family is on life support, brain dead from an accidental overdose. This person had a chronic pain condition and whether they took too much medicine intentionally or if it was taken as prescribed, isn't known and at this point, does it really even matter? This is all too common these days. We get so used to taking high powered drugs while in pain, that we forget just how dangerous they can be.