The MRI is positive! Crap!

The BBQ Pit
1

I’ve never been more upset to hear that I’m healthy in my life. The long and storied tragedy that is Jarbaby’s Spinal Column has come to a most unsatisfying conclusion.

I got my second MRI results back today which were to inform me of whether or not I need spinal fusion surgery or not.

The nurse cheerily told me “the MRI shows a marked improvement in your herniated discs!”

Hooray for you, Mary Sunshine…but here’s the thing. My back still hurts. It still hurts every day. It still prevents me from lifting weights, from riding comfortably in cars, from sitting for more than two hours at a time. IT STILL HURTS. I still have seven different bottles of pills in my medicine cabinet to help me sleep and function.

And now, thanks to this “positive” MRI, I’m “positive” that I’ll never get it taken care of. I can just see it now, going to the doctor.

“Looks like your back’s all better!”

“No, it still hurts”

“No it doesnt! I have the films right here!”

“Yes but it still hurts. Could I have a chiropractic referral? Osteopath? Napropath? Massage? Spinal Replacement?”

“No ma’am! The MRI says MARKED IMPROVEMENT! So it’s obviously all in your head, you hysterical crazy bitch.”

So now what? NOW WHAT? I’M NOT MAKING THIS UP! Why would I make up this pain in my back? Why would I ‘pretend’ to be in pain EVERY DAY when I wake up and have to crawl out of bed because it hurts too much to stand.

Back to square one, and there’s nowhere to go from there.

Fuck.

jarbaby

2

Aaarrgghhhhh I sooo feel your pain! I have two bulging discs that according to the doc (and his review of MRI/Xrays) “shouldn’t be causing you any discomfort!”

Fuck you Doc. You think I do a half hour of stretching exercises every morning because I wake up early and have nothing better to do? I know, I should lose some weight, but that is a slow process - thanks for telling me I won’t get any pain meds till I drop 50# you evil bastard.

I’d offer to trade massages but you already have a good masseuse I hear…

3

If you have a herniated disc, I would stay as far away from chiroprators as you can . . . Though now that I think of it, they might injure you sufficiently to MAKE something show up on your next MRI, so you could qualify for spinal fusion surgery.

In any case, this does sound like awfully hard cheese on you, dear—I hope it somehow works out.

4

From my limited reading (and luckily I don’t have the same problem, altho a chest x-ray two years ago disclosed “moderate spondylosis” of my thoracic and lumbar spine), there is no correlation between the pathology disclosed by films of your spine and your actual pain. Some people with bulging or herniated discs have no pain at all. I have moderate spondylosis (which is dessication of the nucleus polposi in the discs, resulting in narrowing of the intervetebral disc space and what chiropractors refer to as “subluxation” of the discs), I have no pain whatsoever.

Moreover, from what I read it’s better to forego surgery. How long has your back hurt you? I’ve read that the pain will resolve with conservative treatment, usually within a few months. I definitely would not undergo surgery unless it really becomes unbearable. It may help, but it actually may make it worse due to the scar tissue caused by the operation. Arachnoiditis, or inflammation of the covering of he spinal cord, also occurs sometimes.

Then after the first operation does not resolve your pain, you undergo a second, and maybe a third, and then they say that you have “a failed back syndrome.” A vicious cycle which should be avoided, if at all possible.

5

Well, this particular back problem (my lower left side) has been persistent for about three years, with varying degrees of pain from having to miss work, going to the emergency room or just taking advil, which i’m not allowed to take anymore since they think it will make my stomach bleed (I was taking about 12 advil a day)

I was very scared about surgery, I’ve heard horror stories, but it seemed like something that would bring an end to the pain, if we just fused the three vertebrae together and were done with it.

No chance for that now.

Jarbaby

6

I get the same thing from the doctor in regard to my knees…

They are in really bad shape but he thinks that pain-killers are the answer.

I disagree with my otherwise capable M.D. so am looking to get a second or even third opinion, I am willing to go under the knife to have things fixed.

7

I wouldn’t be too overly hopeful to get surgery. It’s quite a risky operation, and the surgeon flubbed by Grandfather’s to the point where he now has back pain AND leg problems.

Still, I’m sorry to hear that you’re in pain. Bad things shouldn’t happen to nice people, and if the asshole doc is trying to tell you that there’s no discomfort, he deserves to have a few of his discs permanently removed.

8

My dad had his vertebrae fused. Only helped his pain temporarily.

9

I think Jarbaby should post a picture and let us judge for ourselves whether her spinal column comes to a satisfying conclusion or not.

Obligatory semi-flirt aside, it sounds like they’re hoping that the situation might resolve itself without surgery. Are there any exercises/therapies that might hurry the process along?

10

Jarbaby,

I’m going to post a very long story about being the caretaker of someone in your position.

My husband had what sounds very similiar to your condition. I had a baby and went through his first year with a husband who could not stand up straight for more than 30 minutes. If he was holding something you had to cut that time in half. He was in pain and lived on pain pills off and on for 3 years. After two MRI’s our doctor pretty much said that there was no real problem and he was going to have to live like this the rest of his life, that was also the day I started smoking again. Fast forward a week or two and we just decided that this was not going to be the last word. My husbands sister worked in the hospital system and she asked around about doc’s in the area who had worked on this kind of problem. So we got a name of a doc we wanted to go see and went back to our orginal doc to ask for a referel and got this hee haw about him not knowing this doctor and he didn’t usually do that and blah blah blah. I was amazed. He has already said he couldn’t help us but then gave us a hard time about trying to do something else. Soooo we get the appointment with Dr. B. a neurosurgen. He says that he doesn’t want to do anything until Mr. V stops smoking and loses some weight. He does. He gives it 4 months and the antiinflammatory pills are still not doing anything so he finally decides to do the surgery. The surgery Mr. V had was NOT the spinal fusion. This is from memory but what they did was drill a small hole through the 2 discs and scraped some of the bulging herniated stuff out. It did leave less cartiledge between the discs but enough.

I just dug out the bill and the name is “Laminectomy/ Foram Lumbar”. Dr. B sat us down and told us that he could have 10 patients with this exact same surgery and only 7 of them would benefit from it. He did not know why this was but wanted us to know. We decided to do it.

When Mr. V first woke up from the surgery it was horrible. He was in more pain than he had been in for the past year. He could barely move (and I had a 1 year old in the house!) but after about two weeks of recovery time it started getting better. It has been one year and he is so much better. He can sleep in any position, he is working full time again (in construction) and can go to the park with his 2 year old. It was very worth it for us.

We had heard sooo many horror stories about back surgery too. They were very scary. I just thought you might like to hear a positive one. Good luck and don’t give up.

Darby

11

jarbaby, my sympathies on your back pain. However, I’m with the other folks who’ve said surgery is not necessarily the answer. It might not completely resolve the problem, and it could well make the pain worse. (I researched the topic of back pain a while back for my mother, who has chronic pain and a host of other symptoms from a long-ago injury, exacerbated by both the corrective surgeries and my birth.)

It sounds like you don’t have a lot of faith in your doctor. (And who can blame you?) But when you’re dealing with an issue like chronic pain, you need to be able to communicate with your doctor, and trust that he’ll listen to you. I realize how hard it is to find an orthopedic surgeon who will listen - why are so many orthos jerks? - but it is usually possible to force a doctor to listen, to a certain extent.

When you see your doctor, start out in a non-confrontational way, asking what the next step is now that the MRI looks fine. (He may well have a next step; he certainly should. Lots of people have pain with clear MRIs.) If he’s got a next step, all is well and good.

But if he belittles your problem, blows you off, or doesn’t make any real effort, make his life difficult. Say you are in pain, point out that pain and pathologies that show up on film are not necessarily correlated, and then ask him how he intends to solve your medical problem. If he says that you don’t have a problem, remind him that the pain is your problem. And don’t let him tell you it should improve, or that you shouldn’t be feeling pain - if he does either one of those things, you say “But I am feeling pain. It isn’t improving. It is interfering with my quality of life and my ability to work. Something needs to be done.”

Act calm but determined. Don’t let him leave the room. Keep talking. Make it clear that you will not go away without an answer.

Sooner or later, he will come up with something, just to get rid of you. It might be another referral, which is fine - the new doctor may be smarter or more communicative or more willing to treat than the old doctor. It may also be a new med, a new idea, whatever. Try it, and if it doesn’t work, make another appointment and do the whole thing again.

The time factor is the key to forcing a doctor to listen. If you take up enough of his time, the pressure will temporarily switch from you to him. He’ll be thinking of his waiting room filling up, his lunch hour disappearing, the rounds he still needs to do over at the hospital, the calls he still has to make, and every minute that passes will make his problems worse. This is true of virtually all doctors.

The only problem with this method is that sometimes, by the time it’s come to this, you’re too depressed and exhausted from being in pain and coping with your problem to be able to do it. So if you don’t think you can do this, take someone with you who can. You’re allowed to have someone in the examining room with you. Pick someone who knows how bad the problem is, is very stubborn, and is not impressed by doctors.

Again, my sympathies. Here’s hoping you feel better soon.

12

jarbaby,
As you know, I had a spinal fusion- 2 18 inch rods, hooks, pins, etc. Nasty business. I now have chronic pain and disability from it. I had no choice, so I’m not complaining, but it certainly didn’t offer a pain-free solution to my issue- for many people the cure is worse then the disease, especially with backs.

At any rate, this:

Is why you will now go and get a second opinion. And a third and fourth if that’s what it takes. Are you seeing an orthopedic doc now?

What exactly does that mean? What degree of improvement? If they are making arbitrary statements like “marked improvement” but not explaining what exactly that means, you need a different doctor. There are exact degrees of range of motion that can be measured- have they compared those? In other words, if the disc has improved, can you now bend further, raise your leg higher, etc?

Have you had any physical therapy for this stuff? (It can make a huge difference in many cases)

I will tell you one thing from experience. I have only 3 working vertabrae below my fusion site. One of them became herniated a few years ago and things went downhill for me FAST. Believe it or not, it fixed itself (I assume through rest, heat, exercise, etc). I did not have to get it fused with the rest, thank God. It was a long time before the pain from it went away, even after they said it had moved back. I felt the same way- “What do you MEAN I’m fine?? I’m in fucking agony here!”

Good luck- I really feel for you and understand how hard it is to be in agony and hear “you’re fine! have a nice day!” Please don’t take that as an answer. You need relief.

Zette
(I wish you were in NY- I have the best doc on earth)

13

Jarbaby, do you have any other health problems, or is it only the back pain? (Not that back pain isn’t enough.) I’m curious, because there are other diseases/conditions of the joints and muscles that are very difficult to diagnose by clinical tests (fibromyalgia being one of them).

14

thanks for the kind words and advice. I understand fully that surgery isn’t always the solution, but I figured since I’ve been through 2 rounds of six month physical therapy, seven different pills, yoga, massage, traction, injections and heat treatment that this was the last resort.

The nurse who said “marked improvement” did say she was just a nurse and that the doctor would explain further when I go see him. I just don’t want to come across as an hysterical drama queen bursting into tears at how my back hurts all the time. It was embarrassing enough to cry when I had the epidural.

Anyway, he’s going to call me tomorrow and we’ll make an appointment.

Feather, I don’t have any other problems actually, and every doctor I’ve seen has said “too bad about your back, because otherwise you’re healthy as a horse in every aspect” Whatever that means.

jarbaby

15

Well, Jarbaby, just think how well the Cubs are doing. That may take your mind off the pain. They’re a cinch to end June in 1st place.

16

No other symptoms (except for that sore on your upper lip), eh? Well, I’m out. Don’t give up, though. Something caused the condition that is causing you this pain, and I like to think that anything that can be done can be undone.

17

Sorry. :frowning: All I can do is ransack Google for help. “herniated disc”. As if you didn’t know.
http://www.neurosurgery.org/health/patient/answers.asp?DisorderID=37

Also, have you seen these guys?

http://www.backinstitute.com/faq/treatments.html
http://www.spineonline.com/index.html
http://www.spineportal.com/index.html

This one looks promising.
http://medhlp.netusa.net/perl6/neuro/wwwboard.html

18

I spoke with the doctor (ortho surgeon) who said he’s going to write a long letter of recommendation to my primary care physician. He wants me to do physical therapy AGAIN (for the third time) and go on Viox (sp?) an anti-inflamatory which I suppose will somehow be *different[/I[ from the Celebrex, Relafen, Naprosin, Etadolac and four other bottles in my medicine chest.

When I said to him that I didn’t understand why my back still hurt he said (just what I thought)

“I don’t know why either, I’ve got the films right here and you look fine!”

sigh

back to physical therapy where they’ll tell me to lift with my legs and make sure to stretch in the morning.

money well spent.

jarbaby

19

jarbaby, if you can, see someone who specializes in pain management. Check at Northwestern Memorial.

20

jarbabyj:

I don’t have a back problem, something else. Viox worked even less for me than the Celebrex. The latest combination that worked for a while was at least 20 mg Prednesone, and 1000 mg hydrocodone. Yes, I walked around and felt how I did before getting sick. That worked for a couple weeks, so I could be a normal person. I had to get off the Prednesone because of all the opertonistic germs that were taking over. I truely understand the point your at. I keep getting I don’t know, and this medicine will take about 30 days to work if it helps. I woke up a month ago thinking how if I was dead I would’t hurt anymore. That is when I refused to leave until I got the heavy duty pain releivers. I don’t have a back problem, something else is giving me a zillion problems. Without the Prednesone the hydrocodone is worthless now.

I hope you can get the treatment you want. You made the decision that the surgery risks are less important, than to get rid of the pain and do normal things again. I’ll support you on that. This kind of stuff wears you down bit by bit until you reach the point of do anything to fix it. You’ve had the problem long enough to know what is worse.

Doctors do things and say how well I took what they were doing. I just reply that I’ve hurt so bad for so long, that what they did comparably was nothing. I been screwed here for about a year in limbo land. I’m writing a number of things here, so you understand that there are others that do know how frustrated you are.

I know that Zette will really know where your coming from, because she’s had a lot of shit dumped on her.

I’ll leave wishing you a recovery very soon.

Formerly Phobia: Your greatest fear in the darkest recesses of your mind.
Now Harmonious Discord: In honor of the board’s Yin and Yang, and mine.

jarbabyj Recover.
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