What are my options? Impossible to get anything straight out of drs anymore

[Mojo the UPSer]

Back in 2010, after over a year of late nite ER visits and numerous appts one dr had the sense to order an MRI on my neck. I had a disc bulge in my C5/C6 that was jabbing into my spinal cord casuing excruciating pain and my hand to ball up when i sneezed or coughed. I recd a fusion a week later and all is well.... Until now. My lower back and hip (both right side) are in constant pain, Im bedridden and cant walk. Ive seen more drs than i can count and they all conclude that my mris and nct etc look fine! Moderate disc bulging in L4/L5, that is likely causing my pain but its not too serious (this is a paraphrase), the disc may have torn but nothing could be causing the level of pain i describe. Most drs have just stood up at that point and literally "wished me luck", ie " please dont come back, i cant do anything". One dr wants to do a steroid epidural on my L5/L6, but im not so sure thats the cause of the pain, i think its my hip. But he wont even consider it! Or do an MRI on the hip to be sure! He just insists on the SEI. The feeling Im starting to get is that these drs see a young 26 year old with no obvious sign of pain and think "guy wants pain meds". I want to get better, to be treated, to pick up my daughter. I dont even ask abt pain meds, just whats wrong and how do we fix it.

In so many words, what are my real options here? I think its sacroiliac joint syndrome, as most of the pain is there and i can namecheck the symptoms. No one seems to want to take a close look, im not crazy... Something is wrong. Any advice? Anyone in my area who know of any "open minded" orthos/pain specialists, i put that in quotes bc apparently spending 5 mins looking at another persons conclusions and not the mris or xrays themselves constitute openmindedness today. This is excruciating, im not going through life like this and my insurance (ups union benefits) is too good to not have a solution present itself, bcbs has been very helpful, ill give them that. All they said to me was to show up to the appt and they will do whatever it takes

[jsewell]

Mojo, i feel your pain. Although with my bad spine, i did immediately find an excellent spine surgeon that completely looked into every possible cause and cure for all my problems. I unfortunately have the spine that keeps on giving, Pain that is.
There must be someone decent in your area. I have no info though. I wanted to welcome you to this site and wish you the best of luck finding a good surgeon . I hope some people here know of some people in your area. you should here soon.
judy

[Maria]

If you're in that much pain what I would do if possible is to go to a good Pain Mangement doctor to get some intermediary pain management so that you could get out of bed and function a bit and then further pursue 2nd and 3rd etc opinions.

It does you no good to sit and waste literally in the bed (I learned this the hard way) when you could at least be getting some relief and being functional esp. if you have children and then in the meantime working on your other surgical or just other opinions.

Pain Management is not a monster... can just be a temporary step to help a person abide what they must to further pursue more research re their own conditions (opinions esp. surgical). Now that being said I'm guessing that your spine situation isn't emergent so that you could get some decent PM and then from there there the further diagnostics to determine what it is you have and what you might possibly need?

Good luck! you've alot on yoru plate. Please keep us up to date now that you've stopped in!

[Mojo the UPSer]

Thanks for the info, i really appreciate it. Ive actually got a great primary who tries his best to help and at least dull the pain as best he can, or as best i let him. Im actually very wary of pain meds, both bc of the abuse potential and because it really is almost just an illusion of wellbeing. I mean no disrespect to anyone who can only find releif through them. I mean for instance, if i take a med, i feel normal, thats not so bad. It becomes an illusion when i think i can pick up my daughter when i really just cant.

In our state we have a database that the cops watch for dr shoppers, as Orwellian as that is i have nothing to hide as ive always insisted that any and all prescriptions get referred to my primary for his consideration and writing. I digress though...

The more i look into all of this, the more limited PM seems, not in a bad way, almost as though its a really young field of medicine that we are just starting to even look at, let alone understand. Maybe limited isnt the right word, perhaps young is better. It looks like for almost every ailment there are 3 options: PT/meds, epidurals/injections, and finally surgery. Each one more invasive than the previous one. Or maybe im just young and havent looked around enough yet.

Im supposed to get the epidural tomorrow, im going to cancel as ive read they really have a small impact on overall pain level as well as having very little impact on the healing process. But mainly bc i want some of my questions answered, i was literally called with an appointment to get them 1 hr after my dr visit. Again, i appreciate your responses!

[Maria]

It's a relatively young specialty tho really managing pain has been around a long time it's just under more scrutiny and control now so regular doctors no longer want to prescribe this catagory of drugs nor should they with a specialty dedicated to pain management.

I wanted to back up here and state that it seems a good doctor would want to see that one had exhausted conservative measures before jumping into offering surgery as spine surgery isn't as predictable as many of the other orthopedic surgeries out there with regard to outcome so maybe if you agreed at least to trying an ESI and it didn't work for you that might bode better for you than just flat refusing them or referral to PM. You don't have to take opioid pain medication for pain relief and I can understand with a young child why you may not want to take pain meds at all tho the ESI or other injections may well be worth a try. They actually did help me greatly for 10 years that I got them (not the case with everyone tho).

Just thinking you should try to help yourself so you can work on getting your other surgical opinions/options. Bed is bad for the body period and if taking a pain medication helps one to keep the rest of the body up and going (which it has for me) then it's well worth it vs. allowing one's whole body to decompensate thru prolonged bedrest.

good luck w/all. You may want to try talking with Mark Mintzer (mmglobal) here.

[jsewell]

Mojo,
With my lumbar pain , i was once helped for almost a good year with an epidural. I was very aprehensive before my first one, but have come to see they do at times provide relief while you are figuring out your next step.

I also went to pain management after a few years of annoying pain and some really painful surgery. I actually had a disease which effected all my muscles and it was not diagnosed for a year so it had caused all the horrible pain.

I have been on opiods for a few years and i am not addicted or feel any problems with it. Don't worry about it making you feel totally normal, the meds only take care of maybe half the pain, just enough so you can get around and do things.
I would strongly recommend trying those 2 modes to get you up and enjoying some of life right now. You will still know you have a back problem.
judy

[mmglobal]

I wish I could find spine surgeons all over the world who will embrace the diagnosis of SI joint dysfunction. Unfortunately, I cannot. While I have handled about 1,000 cases now and have dealt with many dozens of surgeons, I only know one doctor who specializes in this. Search this forum for what I have written about Dr. John Stark in Minneapolis. It's stupid to suggest traveling across the country for something we should be able to get in any major city.... but all of the other surgeons I know will literally scoff at the suggestion.

Having said that, CindyLou cancelled her hip replacement after seeing Dr. Stark. Her SI surgery resolved the hip pain that would NOT have been resolved by the planned hip replacement. I'll bump those stories to the top.

Good luck! All the best,

Mark

PS, I think your username requires an explanation!

[John Galt]

UPS, unless I missed it somewhere in your writing, I'm surprised no one sent you to Physical Therapy.

Also, if you can find a good Sports Med doctor they may help or try a
Physiatrist

What is a Physiatrist?

I can understand not wanting a ESI, I refused them also.

You need a diagnosis not guesses,. keep going until you get one.

[mmglobal]

you may find the pain management specialists more interested in SI joints than the spine surgeons. That is because the diagnostic injections / nerve ablations are quiet lucrative. Even so, that may be worth your while... not only for the pain management, but for ruling out other diagnoses.

Mark

[Hooch]

All that is likely going on as with most cases of severe functionally incapacitating back pain is you've got some bad arse annular tearing going on, but on the MRI all you see is a typical grey disc with reasonable height.

Typically this is why people with severe incapacitating back pain are palmed off, as you cannot image annular tearing reliably without discogram and dye, and if you're doing that you're considering surgery.

As for the patient expressing intolerable pain, well the good doctor didn't go to med school for x years to have to listen to someone of such a lowly status as a patient.

Your doctors are unfortunately incompetent and you're going to have a find a way around them to get diagnosed let alone any possible surgery.

I'm sure lots of people on this website and others can give you names of more up to date spine surgeons.

I don't how long it's been this bad, but the acute stage can last longer than this arbitrary made up 3 month limit. If the condition has been degenerating slowly and is chronic then the outlook is a bleaker.

Good luck.

[Maria]

an annular tear I have to say I've lived thru one that hasn't actually progressed any further and stabilized enough not to be a major pain generator. I've had it since my early 30's and it was greatly painful in my early 40's tho that didn't really last that long compared to all the other back pain probs I had ESP a failed percutaneous discectomy at L4 that changed my episodic pain to horrific chronic pain 24/7 which lasted 5 years in an acute stage also gave me burning neuropathies (severe) from waist to feet bilaterally and then after this severe pain let up I still had chronic low back pain and in both lower discs that had been surgerized (discectomies). They both bulged again and I was put on a low dose opioid medication, had 10 years worth of ESIs and 12 years of Neurontin 1800mg/day for neuropathies.

I was recommended to have more surgery by at least 4 spine surgeons who all more or less agreed on type of surgery but decided not to do anything else and to date I'm still very pleased with this decision.

Be careful whatever you do for whatever reason because you have to live with the consequences and they may be good, not so good or terrible. Either way.. the patient is the person that has to accept whatever condition we end up in and hate to say this tho I think for many it's true.. one spine surgery begets another, sooner or later . I'm not saying to not have surgery.. just to be as sure as you're able it's the right thing to do for the right problem.

[Spine Advocate]

Let's not mince words here. Many doctors are unethical and incompetent.

I found a great blog that exposes the spine industry. The Spine Blogger