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Lala329's picture
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Do You Have a Diagnosis?

Hi all,

Just a curiousity question: do most of you know what the source of your chronic pain is, like with a specific diagnosis?

I'm just curious because I am really stuck at a hard point in this pain journey- my PM doc is still trying to come up with some explanation or diagnosis for why I still have pain so he can better direct my treatment, but we're pretty much out of pain sources. We've fixed what there is to fix, and we've ruled out a lot of potential pain sources. They really don't have any more injections or blocks to try with me, and I guess I'm just wondering at what point you give up on a diagnosis. It's hard to let go of wanting to figure it out because without identifying the pain source it's hard to know what will work best to manage the pain. There is also that nagging feeling that something is being missed...

happyHBmom's picture
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Yep, I had an equestrian

Yep, I had an equestrian accident too Smile I lived with the pain for a year and a half before they took new x-rays and found that the fractured vertebrae had completely collapsed.

I think maybe your PM doctor is overstating the level to which they can "fix" these problems. It sounds like you are only 8 months post-surgery?

_____________

11/2007- equestrian accident. Fractured L2, 90% loss of height, retropulsion, bone fragments. Moderate-severe chronic pain treated with epidurals, facet ablation, medication.
12/15/2010- L2 corpectomy and L1-L3 fusion via thoracotomy. Posterior plates installed next day. Total surgery time 9 hours!

User offline. Last seen 5 hours 54 min ago. Offline
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Hi Lala

Welcome and to answer your question, I have some questions. After you fusion, have the checked your L2-L3 disc that had the tear? Did they do a discogram to see if it is a pain generator?
I had a two level fusion, with another disc that was not painful enough to fuse, but had problems. After my fusion, I still have pain and am now having a discogram to see if that is the problem now. It seems that if it is torn, it can be causing you pain if it was never dealt with. I am no Dr, but have you seen an Ortho to see about that problem?
I just dont think that your pain Dr is the answer to finding the diagonosis. Take Care, Robin

_____________

2 level PLIF Dec 2008
Hardware Removed Sept 2009
Bone tumor in Eye Socket removed 10-26-09, They confirmed I do have a brain LOL
Fentanyl Patch 100 Mico, Oxycodone 30 MG every 4 hours breakthrough

Surgery Dec 13, 2 level fusion L2-3, L-3-4, ALIF min invasive. Nuvasive procedure..quite the deal!

MelW's picture
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They still have not actually

They still have not actually pinpointed where my pain is coming from, yet. I am still waiting for that moment. I have been told it could be from several different conditions I have.

I am starting fresh with a new pain doc and a new spine doc and am hoping for some insight.

Good luck to you.

Lala329's picture
User offline. Last seen 45 weeks 1 day ago. Offline
Joined: 06/03/2009
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To answer your questions:

Hi guys,

Thanks for the responses. To follow-up and answer your questions:

1) Yes, I'm only 8 months out from my SI fusion. It helped and I no longer have SI joint pain, but I am still having significant pain around L5. Unfortunately the fusion has not improved my sitting tolerance at all (which is the goal that my NS and I both had for the surgery). I have a very difficult time sitting.

2) I had IDET to repair the L2/L3 tear and my most recent MRI shows that all the discs look great, including the one that had previously been torn.

All my imaging studies at this point look pretty good. There was a possible bilateral pars defect at L5 noted on my last MRI report, but since I have had previous CTs and oblique X-rays that did not show this they are telling me that it is nothing since CT is better for diagnosing bone problems. I've had CTs, MRIs, a discogram, facet injections, epidurals, trigger point injections and have been evaluated by numerous specialist over the years so I'm really feeling like the diagnostic process has been exhausted. I truly feel like I've been working with excellent doctors, but for whatever reason I've continued to be a mystery. It just seems like with such localized pain at L5 and my inability to sit there has got to be an explanation besides just "chronic pain," which is why I'm curious about whether other people have a diagnosis or if it is normal to be unable to pinpoint the source...

I appreciate your insights and hope others will continue to share.

User offline. Last seen 1 year 3 weeks ago. Offline
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lala329...may I ask?

I am sorry but as soon as I read your post I saw IDET. I have been looking high and low for people who have had it and the experience they had in recovery and such.

Can you tell me more about it?

I am sorry if it is off topic so if you like you can PM or I can PM you.

Hope you can help as I have a doctor who wants to perform the procedure and really on the fence about it.

-js

happyHBmom's picture
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LOL, you've been much

LOL, you've been much further along the path than I! But I have discovered that the science of back pain is still kind of in an infancy- there is a lot they do not understand.

However, they do tell me that the lower back pain I have around L4 (also exacerbated by sitting) is due to the problem with L2. The problems I'm having at L4 and L5 manifest as pain in my hips and legs. Are there no bone spurs or anything left over from the fractures?

If they don't find anything, I don't think they are saying there is nothing wrong with you. They are saying they just don't know what's causing the pain. Unfortunately, as you see here, not all back pain is fixable Sad

I'm not sure what your meds are, but I found I was able to sit much longer with Lyrica.

_____________

11/2007- equestrian accident. Fractured L2, 90% loss of height, retropulsion, bone fragments. Moderate-severe chronic pain treated with epidurals, facet ablation, medication.
12/15/2010- L2 corpectomy and L1-L3 fusion via thoracotomy. Posterior plates installed next day. Total surgery time 9 hours!

charry's picture
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Hi Lala

I have Degenerative Disc Disease but told by some Drs that it shouldn't be causing my pain. My 3rd PM Dr. interview say they don't usually do an epidural for DDD patients but because I had a L5-S1 herniation with an annular tear on my 1st MRI she said I probably have some nerve issues still with that and having leg sciatica she will do a series probably 3. One each month and also facet joint and S1 injections. So yes I have a diagnosis but like a herniation in someone who may have no pain I'm one that has pain and it's hard to pinpoint that pain.

However since you've had surgery hopefully there may be options for you. Has the Surgeon done a discogram to see if the nerve generator is from L5?
As for pain while sitting I had problems but since I got an infrared platinum heating pad it really helps me feel comfortable while sitting.
I hope you're able to find some pain relief. take care. Charry

_____________

Any answers I have is not medical advice only a Doctor can help you with that. Just sharing my personal experience as a fellow Spine Health member only. Mild DDD of complete lumbar area with recent healing of L5-S1 HD and annular tear.Leg &foot weakness nerve compression L4-L5.Mod. disc changes C5-C7 nerve impingement sore elbow and numb hand. Sept. 2011 MRI L4-L5 disc bulge and L5 facet joint and narrowing. Meds-Oxycontin 80mg,Cymbalta,Lyrica, Flexeril,Naproxen,Serax. Platinum Infrared heating pad. ER and Oncology trained and Cardiology RN on Disability. Keep the faith.

Wrambler's picture
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Sometimes

We just don't get the cut and dried, "this is what is wrong with" diagnosis.

My pain is in right shoulder and upper arm, migrates to the tips of my fingers and upper back. Can be anything from a burn, to a tingle to a "wow, that feels like someone is cutting my middle finger off."

My doctors simply say there is something wrong between your neck where the nerves come out and your shoulder, "No, we don't know exactly what"

If I go dig through my SCS approval papers I think they list DDD, peripheral nerve damage or pain and something or other else to. I don't dwell on what the cause may be as they don't offer any form of "repair".

I have my spinal cord stimulator and a handful of different muscle relaxers, am Bi-polar type II so I just try and make the best of each day at this point.

Soon, now I will be 4 years out from my mountain bike crash. Some deep dark twisted part of me wants to be back on that bike by the time that anniversary comes around.

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"I have been told my statement or statements are not logical. Would Mr. Spock ride a bicycle down a wooded mountainside when there was a perfectly good stationary bike at home?" NOTICE: Please consult a real DOCTOR before doing anything that may hurt yourself or others! Please be careful!Medtronic SCS Placed May 4, 2009. Cervical, for chronic right shoulder, upper arm pain.