revision possible

mwolf2022 · #1 (**permalink**) 02-01-2011, 01:06 AM

Hi Everybody , My name is Mike and I am 34 years old I wanted to share my back history and hopefully someone can point me in the right direction.

I started to have low back pain and leg numbness after a fall in 04.I did a lot of therapy and nothing really helped.My doctor referred me to a neuro who performed a microdiscetomy.

I was fine for a year then i started to get chronic low back pain , it was a constant ache.I had therapy , injections , pain meds , yoga , chiro.Nothing worked I dealt with the pain for two years and in november of 08 I had a fusion of the L5-S1.The surgeon put in a stalif device.After the fusion I never really felt that well.I mentioned it to the surgeon at follow ups and he gave me the impression that it was one and done.I have had a mri and ct scan and they all come back that the fusion looks solid but why do I have this pain it is unbearable and it effects my life greatly. All the doctors look at me like im nuts when I tell them I have pain.This pain is all in my very low back , more like sacral area and buttocks.The burning is so bad I just dont know what to do and any meds I have been prescribed do not work.I Wonder every day if I need a revision , if I can even find a Surgeon that would consider it since all the test come back negative.This site has been very calming for me that I can share my story and know that there are other people out there that deal with the same thing I deal with every day.

Maria · #2 (**permalink**) 02-01-2011, 01:34 AM

I had what sounds like this type of pain for years post my 2nd discectomy (and got the same reaction from Neuro and Ortho) plus burning pain that was both legs bilat to my feet but worse in low low sacral area and tailbone.

I did respond to medication for some of the pain (Elavil first 5 years then Neurontin for 12 years re neuropathies) plus 9 years after the 2nd surgery that caused the symptoms (which were blamed on scar tissue and rebulging of discs previously surgerized) I was started on opioid pain medication and lumbar ESIs up to 3x/year for 10 years.

Have you tried medications for nerve related pain like Neurontin or Lyrica? Any opioid medication? I'm guessing you might have from what you stated.

Have you had an MRI since the surgery? Any mention of scar tissue? Any mentiong about removing hardware? Any SI joint dysfunction prior to surgery or now? Just wondering...

mwolf2022 · #3 (**permalink**) 02-01-2011, 03:28 PM

Hi Maria ,

I never had any back pain at all prior to the surgeries , I never had this type of pain at all. The pain is concentrated bilat in my butt and it is like a switch.
I have pain when standind but as soon as I sit it is unbearable.(My job is sitting at a computer all day).

Pain meds have been no help at all.Never had Lyrica , Neurontin did not work .Maybe it is this part of the country but no Dr will prescribe opiod meds. My PCP does give me Norco , only 30 a month , and I hold out taking them unless I feel like I am going to pass out from the pain.I did have a mri and ct scan done by the surgeon who performed the surgery and he did not mention anything about scar tissue.

I am scheduled to see a rehab guy next week to see if it has anything to do with the SI , I never had any problems before this surgery, and the hardware can not be removed to my knowledge as it was a standalone device.

dshobbies · #4 (**permalink**) 02-01-2011, 05:59 PM

Hi Mwolf2022 and welcome to the forum,

I'm sorry you find yourself in pain following a procedure that was supposed to eliminate it.

Once a doctor treats you as if your pain no longer matters, it's time to find another doctor. You're not making this up but your doctor dismisses your complaints siting tests reveal nothing is wrong. Obviously, something is wrong.

You are your own best advocate. Stand up for yourself and demand to be heard - get another opinion and you also might want to find a pain management specialist who can help you control your pain with more than 1 norco per day.

Good luck, Dale

mwolf2022 · #5 (**permalink**) 02-01-2011, 09:20 PM

Hi Dale , I am trying to find a doctor I feel comfortable with , there are many out there who will cut and run.(I unfortunately have met two.)

I thought when I had the fusion done my problems were solved , and now I get looked at like I have 3 heads when I say I have pain.

Finding a PM doctor has been troubling as well , I have seen three all they recommend is nerve blocks that have no effect.I don't know if its me , or if the medical field in my area , but it seems nobody is willing to help. soon as I mention I have had two back surgeries and still have pain there attitude changes and they want to refer to somebody else.

mmglobal · #6 (**permalink**) 02-01-2011, 09:25 PM

Mike, welcome.

This is a quick hit for me... I hope I don't miss anything. When I get back from my trip, I'll check again.

did the docs make an attempt to accurately ID the pain generator, or did they fuse the level that looked worse on MRI? (Is L4-5 looking perfect?)

T-spine and C-spine OK?

You are already looking into SI joint... ask about piriformis syndrome.

Sacral cysts? (I guess this question is, "did they image your sacrum", or were there cysts or other problems inside the spinal cord or nerve roots?)

Good luck!

Mark

mwolf2022 · #7 (**permalink**) 02-01-2011, 11:34 PM

Hi Mark ,

The doc just went with the mri report and fused that level.When the pain started after fusion they did a discogram and all other disc were negative.I would hate to feel what a positive result would of been.

I do not believe the sacrum was scanned , the doctor seems to have tunnel vision and is just focusing on the fused level.

I may just have to get all my stuff together and send them out to a doctor and get there opinion.

mmglobal · #8 (**permalink**) 02-01-2011, 11:50 PM

People can have sacral cysts that are completely asymptomatic. Then, a trauma like an accident or a surgery, can change things enough so they become highly symptomatic.

I was going to ask about discograms, but since you said no back pain before the surgery, discograms would not have been indicated.

Hopefully, it is something that will fade on it's own, or that can be diagnosed and fixed. The possiblity that collateral damage from the surgery just f'ed things is scary. However, don't give up. But, before you do something else, you (and your docs) must be more certain about the diagnosis and rule out other possibilities. Don't do anything based on wishful thinking or the doctor that just tells you what you want to hear.

Mark

PS... you understand that I'm not a doctor and simply share my experience and opinions. Don't believe what you read on the internet (expecially from me!) If it's on the internet, it must be true!

mwolf2022 · #9 (**permalink**) 02-02-2011, 12:18 AM

Mark ,

I will ask about the cysts and piriformis syndrome. I was hoping it was pain that would just fade away , but is has been like this since august 09.

Whatever is causing the pain seems to be staying. I forgot to mention that I was pretty much pain free after the fusion(except for the normal aches).

Then one day I made a twisting motion getting something out of the car and had a intense stab in the low back.I woke up the next morning with this pain and it has never went away and that was 15 months ago.

Thanks for the info.

mwolf2022 · #10 (**permalink**) 02-22-2011, 03:59 PM

Just a update , I saw a new pain specialist - rehab doctor yesterday. Guess what he decided was the next course of action.

PT which I have already been to for well over 3 months with no results. I don't know where to go from here.

I have a appointment with my pcp next week and will ask his opinion.It is really sad that the only Dr that seems to care and try to figure out what is going on is my pcp. All the specialists seem like they don't want to be bothered , or offer treatments that have already failed.

I guess I will be looking for another Dr to try and figure out what is causing this pain.
On A side note has anybody ever heard of a MRN exam.

Seems like it would be beneficial , but it is not covered by most insurances.

dshobbies · #11 (**permalink**) 02-22-2011, 05:10 PM

It took years to surround myself with doctors who care. We simply don't have that kind of time with specialists. My gp's philosophy is if you don't know what's wrong, try harder. Whenever I ask for a referral, I make sure he understands I want someone just like him - but...

Sorry you're encountering what most of us have already experienced. Just curious - what did he say when you informed him pt hasn't worked for 3 months? Maybe he thinks you should try harder

Dale

mwolf2022 · #12 (**permalink**) 02-22-2011, 05:36 PM

Hey Dale ,

He said he didnt think the therapist put me through enough exercises.
Mind you before the fusion I went to the gym 5 days a week and was able to tolerate light exercises and stretching.

Now I cant even sit on a bike for two minutes without my butt feeling like it is on fire.

The thing that is funny is they all want me to do flexion exercises to stretch the disc back.I had a fusion there is no disk.

mmglobal · #13 (**permalink**) 02-22-2011, 10:39 PM

MRN is MRI - Neurography. It is an MRI with the parameters tweaked so it shows nerve tissues and other surrounding soft tissues better. It's quite expensive. I've had many clients get MRN with mixed results.

Call me.... number on the GPN website if you would like to have a brief discussion about it. (no charge of course.)

Mark

mwolf2022 · #14 (**permalink**) 02-24-2011, 05:40 PM

I thought I would ask everybody there opinion.I am going to see my pcp next week and will ask for a new mri to be done as the last one I have had was almost 2 years ago.

My question is what part of the body should be included in the scan.I have had a discogram done all levels above the fusion were negative.

Should I ask for lumbar spine , sacral area , pelvic area. All my pain is in the buttocks , and I dont want to get this done again and not include all the areas that could be causing the pain.

Thanks

Mike