Advice Needed: Pain Managment Program vs Surgery

[petrkr]

Asking for advice:
I guess everybody would like to know if a surgery was going to help. I had an Microdisectomy L4-L5 and a very minor surgery (epiduroscopy) done in 9/2008 and 6/2010 respectively. I also had seven epriduarl injections and yes they do help for at least a while. They do not make me be fine, but reduce my main for at least few days to 2-4 (10 scale). I have been in non stop pain for 3 years now - I am so f...ing done. I had to stop working on 2/16/2011 since I can no longer focus and was medicated up to wazoo just to get there. So now my financial situation will be very though.

My recent MRI is from 3T MIR (Highly recommend it by the way, the images are crystal clear with stupid amount of detail. It is basically doubling or tripping resolution of most MRI's in the US (1.0 - 1.5 T)

1) The Chicago Bears surgeon recommended dual fusion to stabilize the back if I can't take it anymore.
2) Dr Boeree recommended dual M6 L4-L5-S1
3) Pro Spine recommended dial Prodics (of course)
4) Dr. Ann (Rush Medical) - recommended pain management first 90 days (this is a 8 hour/day program for 4-5 weeks to try to get the mental and physical problem in check.) - I am doing this.
5) Dr Ann's Fellow actual said I may need to open the foramen to give my nerves a space. He seemed to really care and really think about it.
6) Joel Press (one of the best Physiatrists in Chicago told me to to live with it and learn to deal like a man, haha.)

The real problem is that I get quite a few non surgeons telling me that my back is not that bad and that it should be manageable. But when I sit down for more than 3 minutes without medication I am in 7-8 pain. I do think that is physical problem and not in my mind.

So I am doing the pain management for 30 days starting Monday, not sure what to do next... concerned about doctors telling my back is not all that bad but I can barely function.

Thank you Peter

[KBear]

The real problem is that I get quite a few non surgeons telling me that my back is not that bad and that it should be manageable. But when I sit down for more than 3 minutes without medication I am in 7-8 pain. I do not think that is not physiological.

Welcome to the forum. I got treated like a crazy lady for 2.5 years and they just 'didn't know why I was in so much pain.' It's easy for them to say you don't need surgery or to live with it, because they aren't the ones suffering day in and day out. Chronic pain wears you down and until someone has lived with it, they don't get it- don't care how empathetic they are. I had doctors, family and friends who thought that I shouldn't have surgery (doctors because they were saying fusion and I was too young). I am so glad I had surgery. It was a little after 3 years of being in pain when I had surgery, took another 18 months to completely heal and be pain free; but it was worth it. Ultimately only you can decide when enough is enough and it's time for surgery.

[Justin]

Hey Peter,

Welcome to the Spine Patient Society.

You've been through a lot, and it's obvious you have a lot on your plate right now.

The real problem is that I get quite a few non surgeons telling me that my back is not that bad and that it should be manageable. But when I sit down for more than 3 minutes without medication I am in 7-8 pain. I do not think that is not physiological.

So I am doing the pain management for 30 days starting Monday, not sure what to do next... concerned about doctors telling my back is not all that bad but I can barely function.

Thank you Peter

I'm guessing you meant psychological (not physiological), right? Anyway, my personal opinion is if you are not having gross neurological deficit (loss of bowel/bladder, increased difficulty with purposeful movements of your limbs), then I would not pursue another surgery. *Of course, this is not medical advice...just my personal opinion.

Trust me, I completely understand barely being able to function...I was there for most of my 20's. It's great to read that you are in a formal pain management program at Rush that works on both your physical & mental needs. Unfortunately, a lot of surgeries offered to us, Spine Patients, will not ultimately produce a better outcome than conservative care along. This is not to say that you have to live in 7-8/10 pain daily. I think a strict, daily routine that includes physical therapy to work on your core and pelvic/spine stabilizers and cognitive behavioral therapy to address the learn behaviors and deal with chronic pain. The mind is powerful and something as simple on your outlook on a situation has been shown to dramatically decrease pain levels.

We all want a fix all. If I could make a "fix all" pill for Spine Patients & those dealing with chronic pain, I would be a very rich man.

I think your situation comes down to trusting your gut. Answer these questions for yourself: will surgery ultimately help and improve your quality of life? Does your current quality of life require drastic (playing devil's advocate here) intervention such as invasive spine surgery?

What does your MRI have to say? How do your lumbar facets look (any hypertrophy)? Any ligamentous issues (ligamentum flava hypertrophy)? How's your general health? Overweight? Smoke? etc.....

I'm just throwing a few things out there for you to think about. You are way ahead of the game in that you are a well-informed patient (the one's we love to see ). The ball is in your court so to speak. Keep asking questions. Make a list of your options with pros and cons for each.

I always tell patients that this fact is something one should remember when contemplating spine surgery: patients that underwent invasive spine surgery and patients that pursued conservative therapy (rehabilitation) had very similar outcomes at 2 years post-op.

I wish you the very best. Welcome, again, we are glad to have you here!

[ajj1001]

The real problem is that I get quite a few non surgeons telling me that my back is not that bad and that it should be manageable. But when I sit down for more than 3 minutes without medication I am in 7-8 pain. I do think that is physical problem and not in my mind.

So I am doing the pain management for 30 days starting Monday, not sure what to do next... concerned about doctors telling my back is not all that bad but I can barely function.

Thank you Peter

Sounds like you are doing the right thing and totally exhausting all the conservative options. Even if you do pursue the surgical option the skills you will gain from a PMP will be useful in your ongoing management and recovery. Its also good that the fellow from the Dr who has sent you on the PMP is not ruling out a surgical option. You should be able to evaluate a way forward much more effectively based on their opinion if the programme fails to be as effective as they expect.

alison x

[Katie]

Ultimately only you can decide when enough is enough and it's time for surgery.

It's sort of like women and haircuts...we can go along for quite awhile thinking 'I should do something about this', and then one morning we wake up and simply can't go another hour without doing something...now I know, that sounds trivial, but I went four years trying to get someone to do something, anything to help the ever increasing pain. It took over a year to get any kind of pain control in the beginning, and then hopping from surgeon to surgeon trying to find an answer. Most of us here do understand only too well.

Conservative treatment is recommended for pretty much everyone, and for many it does work, enough. But then there are the rest of us.....

At some point, when the pain control doesn't work enough/anymore and quality of life continues to go down, hard decisions become much easier. Kathy's quote above says it all.

Answer these questions for yourself: will surgery ultimately help and improve your quality of life?

Unfortunately, until you go through it personally, you won't know the answer to that question. The best you can do is a great deal of homework and talk to those who have gone down this road...which is why you are here and asking the right questions. (And yes, good questions for a Devil's advocate, Justin )

[Hooch]

6) Joel Press (one of the best Physiatrists in Chicago told me to to live with it and learn to deal like a man, haha.)

The real problem is that I get quite a few non surgeons telling me that my back is not that bad and that it should be manageable. But when I sit down for more than 3 minutes without medication I am in 7-8 pain. I do think that is physical problem and not in my mind.

So I am doing the pain management for 30 days starting Monday, not sure what to do next... concerned about doctors telling my back is not all that bad but I can barely function.

Thank you Peter

They have no insight into your condition and frankly no insight into what medical science knows and doesn't know about ddd, but they wont let that stop them from telling you how to handle it. Don't include their opinions in your decision making.

You are clued up, and that is half the battle. Good luck.

[Justin]

Just to make sure everyone is on the same page: Joel M. Press, MD is a physiatrist not a psychiatrist (physiatrist = physical medicine and rehabilitation).

Answer these questions for yourself: will surgery ultimately help and improve your quality of life?

Disregard this question. I guess I was typing too fast; this question is not one you can answer preoperatively.

[dalhousie]

Hi Peter,

Sorry you're having such problems with your spine. I started with back pain at 29 years old. I was diagnosed with my 1st episode of DDD at about 33. I was told it was early stage DDD & to cut a long story short was unable to work throughout my 30's Over the following 6 years I went into hospital about 11 times for injections into my disc & facet joints & also had facet nerve ablations. My quality of life was extemely poor & lost all of my 30's to DDD. My DDD progressed to being advanced & I sought better advice & had a fusion at 41 years old & it transformed my life.

What I've learned over the years is that when it comes to pain levels there is NO association between the level of DDD & the amount of pain a patient experiences.

I started with another episode of early DDD in 2008 & knew where to go for good advice straight away this time. I'd lost all of my 30's & was determined I wasn't going to lose all of my 40's. My surgeon recommmended 3 months of intensive core strengthening/pilates & if that didn't help me gain my life back then he'd do ADR. I did the pilates about 7 hours/week & it did help but fairly minimally so I had the ADR op. My surgeon reiterated that the level of DDD isn't associated with the level of pain - an individual can have minimal pain levels & advanced DDD whereas the next patient can have high pain levels & early DDD.

I'm in the UK but I hope you find good advice you can trust & feel comfortable with. Before I had my 1st surgery I had a lot of ill-informed advice & wasted many years of my life lying down & in a lot of pain. I'll never get those years back so I hope that doesn't happen to you. I've been fortunate with my surgeries & not everyone is - even the best surgeons have their failures so I guess you just have to take a measured view with how it's affecting your life & weigh up the pros & cons.

Good luck with your research.

[Cindylou]

What I've learned over the years is that when it comes to pain levels there is NO association between the level of DDD & the amount of pain a patient experiences.

My surgeon reiterated that the level of DDD isn't associated with the level of pain -an individual can have minimal pain levels & advanced DDD whereas the next patient can have high pain levels & early DDD.

Welcome to the forum Peter. I am sorry you are dealing with so much pain. You have received so much excellent advice here already, and I hope you find it useful. I especially liked what Ruth said, and reposted it in bold because I think it is such valuable advice and it is so true. Doctors really don't understand pain, bottom line, and why one person can hurt like the hell with mild DDD, and how another can be getting along fine with severe DDD. But the bottom line is, when you do hurt and hurt severely, no matter your diagnosis, you need to be heard. No one should have to live a life in severe pain. I do hope you find relief during your month of conservative pain management, and I also hope you find just the right solutions for you, so you can get on with living your life as close to pain-free as possible. My very best to you, Cindylou