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Chronic fatigue post lumbar fusion

From: mattn73 - on 02/02/2011 2:27pm

I had a lumbar fusion five years ago and still cannot be up and around for longer than three hours. I get one hour of good stamina. If you met me for the first time in that hour you wouldn't think in a million years I owned a walker and four canes. I need to sit, stand, lie down and move around in hour two and if I don't I will be totally out of commission after three hours, needing a nap of an hour or so. The fatigue is so severe that I can barely lift my arms or even speak. The doctors have no idea what to do and are simply labeling it a nondescript nervous system disorder. I don't want to treat it, I want it gone. Can anyone out there help?

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on 02/06/2011 10:49pm

@ mattn73

I had a facet fusion to L5-S1 in September. I have a similar issue as you. Prior to the surgery, I was walking with a cane. Now a little more than 4 months have passed and I still cannot walk more than a few blocks or I will go into one of these fatigue episodes. Today is Super Bowl Sunday and I had a fatigue episode. Yesterday I was feeling good and I moved around and did a whole bunch of stuff around the apartment. Now I can't get off the couch for more than 30 minutes at a time. My physical therapist says this is sort of a typical response for someone with chronic pain. Honestly I have been like this for like 6 years now. It would get better and get worse from time to time. I never realised it was my back causing all the fatigue issues. I wish I knew what the answer is. I thought this surgery was supposed to fix this, yet here I am not much better. I suppose the fact that I do not require a cane for all walking is good. But what is life if you can't walk more than a block or two, and then if you do, the next day is spent on the couch or sleeping 10-12 hours straight? I don't normally go on message boards, but my fear is getting the better of me. I am really sorry it has been 5 years for you man. That is terrible. Both of us need to find something that works. The worst part is I know if I go get a steroid shot, I will be fine for 2 weeks. If they know the steroid shot will fix it, why can't they figure out what the problem is? It is very frustrating.

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on 02/06/2011 10:53pm

Hopefully we can get a dialogue going about this with some others. I don't notice the chronic fatigue aspect talked about a lot in the literature with respect to lower back pain and surgery. For me, and it would seem for you as well, that is the main problem. I will tell you this. Prior to surgery, I had been on prednisone for 4 years at a low dose (around 10mg). I was able to do everything without getting fatgigued while on the prednisone. They pulled me off of the prednisone slowly to uncover the underlying issue, which was the L5-S1. Doctors will tell you taking prednisone for a prolonged period of time is dangerous, and I would agree. On the other hand, if a person is disabled without the drug, what is worse? I am hoping not to have to find out, because I still hope my situation will get better with time. I has only been 4 months. Still, it seems like it should have been better by now. If I am like this a year from now and I lose my job or have to go on disability, I may obtain some predisone and see what happens.

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on 02/08/2011 1:22am

Hi Matt
I got into the same situation where it was even hard to make a pot of coffee. I called my cousin who is a Dr. and talked to him. He said I sounded like I was hitting bottom in where my mind wants to do something and the body is at the point of saying no, theres nothing left. It may sound crazy but he told me to get a case of ensure drinks and drink at least three a day from then on. Always have some ensure in the fridge. I started drinking it and it actually made a world of diffference in my stamina and ability to do things. I think we all in Chronic Pain dont eat like we used too. Our body's are needing the calories and nutrition. I hope it helps but really hope you try it. I think you will see a big difference all in 2-3 days. Of course at first I would drink 6 a day to get the nutrition in there. Good luck Matt and hope it works, I'm really betting it will at least help.

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on 02/08/2011 3:22pm

I was begging to wonder if it was something to do with the pain meds.So I tried to take myself off them but its been a little oer a month since my L4- L5 fusion and the first week i felt great its slowly gettin worse.Right now their trying to say depression but im not.I have 2 sets (5) steps in my house.it totally exausts me .by noon Im in horrible pain and literally so tired that im asleep the rest of the day.Im not depressed a little ticked off beecause like everyone I thought this surgery was the answer.All we can do is hang in there mabye they'll find a reason behind it

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on 02/08/2011 3:22pm

I was begging to wonder if it was something to do with the pain meds.So I tried to take myself off them but its been a little oer a month since my L4- L5 fusion and the first week i felt great its slowly gettin worse.Right now their trying to say depression but im not.I have 2 sets (5) steps in my house.it totally exausts me .by noon Im in horrible pain and literally so tired that im asleep the rest of the day.Im not depressed a little ticked off beecause like everyone I thought this surgery was the answer.All we can do is hang in there mabye they'll find a reason behind it

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on 02/08/2011 4:47pm

You may have Depression without realizing you really have it. I am taking Lexapro for the depression part and it is supposedly suppost to also help with the pain. I don't know, between the Lexapro, Nucynta, Some kind of Headache medicine, Meloxicam, Gabapentin, and a pain pump I am a walking labratory experiment. The Nucynta doesn't really work so will probably be back on Hydrocodone. I can't stand Hydrocodone and its the only one that seems to halfway help. I refuse too take the stronger stuff. Anyway if you get everything I got you probably won't be depressed. You won't care. Hell you'll make it up the steps in no time. The pain pump really is what helped me the most on stamina. Hope all that crap helps someone. Now I'm getting pissed.

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on 02/08/2011 7:37pm

Yea I get really pissed 2.Ithe only depression is comin from dissapointment 44 and I feel 90.but ive neer heard of the meds they have you on I was perscibed everything from oxicotin morphine fentinol and refused them all. vicotin seems to help the most.BUT i reallly had all the faith in the world that tthis surgery wouldget me awaY from all of it

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on 02/08/2011 10:53pm

I had the same expectations too, they don't tell you it's a 50/50 chance before the surgery. I have cut back on the meds with the pump. I'm not real sure I am any better off or more the same instead of getting worse. Either way I know I will have to have the one's above and below the 4 fusions in my neck fused before too long. They are going out and I can feel it going a little more every week. SO I don't know. It will stop it from getting worse and maybe theres a chance this will fix it. I think thats whats so bad is just what does the future hold. I have to keep up some hope, at least maybe they can do the artificial discs before long or come up with a new breakthrough in the treatment. You never know really what tomorrow will bring.

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on 02/09/2011 3:42pm

I hear ya! I 2 have bad discs in the neck.My surgeon says we're not gonna do them now he was more concerned with my back now I wish if he was going to do another fusionhe would have done them all at once even if i was bedridden for a month because now Im scared.The 75% chance turned out to be more 40%

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on 02/09/2011 11:39pm

Thank you all for your posts. Since the topic of depression came up I'd like to say that i take 120 mg cymbalta and it makes a ton of difference with nerve pain. I switched from lexapro.

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on 02/10/2011 10:28am

@mattn73

I am glad to hear you are doing a little better Matt. Your post makes me sad. A lot of the posts on this site make me sad, because a lot of people have not recovered what they thought they would. I was reading another thread about the statistics of real spinal fusion recovery and how it is only 33% or something. There was a lot of doom and gloom on that thread. It is terrible that some people experience post surgery problem so bad that they are disabled and are forced to take pain killers. The thing is, I honestly think a lot of the problem is that people are not diagnosed properly prior to surgery. I am having severe lumbar inflammation with associated pain and fatigue post surgery, but these are the same problems I was experiencing prior to surgery. In my case, the doctors did a facet fusion but left the L5-S1 disc in place. I think my post surgery experience indicates that this was a mistake, and now they will have to remove the disc.

I am rambling a little now, but I wanted to write you back because I don't want you to give up. I have talked to many people personally who have had successful fusions, so I really don't believe people who say the recovery rate is only like 33%. I think that is total BS. I think maybe only 33% people feel like they did before the surgery, but that would be expected. It seems to me a lot of it is about degree. There will always be more pain and discomfort after an orthopedic surgery, and there is usually never a 100% recovery. In your case, however, I think it is ridiculous for doctors to say they fixed the problem and you now have a non-descript nervous system disorder. There is absolutely no reason for you to be that fatigued. Either they messed up something during the surgery, or they did not have the diagnosis correct in the first place. Don't give up Matt. Keep fighting until you get a proper diagnosis. That is what I am going to be doing.

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on 02/11/2011 2:38am

Hey Matt
Thanks for the heads up on the Cymbalta. I think I will talk with my Dr. about changing from Lexapro to Cymbalta next appt. Hope you and yours are having a good day.
Joey

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on 02/18/2011 5:06pm

It's been a week since anyone posted on this thread - but I just want to mention a few things. One is the obvious which is that the people that post on message boards are awesome - but the percentage sways to the population writing being the one's who are having less than desirable results from their surgery or medical management. I think some percentage do do pretty well - you begin not to think so when you read the sad misfortune of what seems so many people. But on a whole I do think that back surgery is one of the more delicate decisions - as the results are not as utterly curing or widely helpful as some other types of surgeries. Many go in hopeful and come out with not only the sx's they were trying to help but with additional pains as well.

The other thing I wanted to mention is that it struck me that maybe there is something to the whole topic of pain or particularly chronic pain as a real cause for chronic fatigue. I say this because I had a very similar occurence of same type symptoms after having bilat hip and bilat knee replacements. I think some 'body's' don't do as well after the trauma of major surgery. I've seen this as a nurse and now I read your story and now I have this myself.

After the hips it took 8 mos. to get back to work full time - soon after I had a collapse in functioning - about 8 mos. later. Made it back to work only to have the knees replaced another 8 mos. later. The medical community talks of surgery as if it's "light" - Never mention the after effects ... and once the surgery is done - basically so is their job. You are left to 'deal'. Alone. Well just as y'all - I had that crippling fatigue -- got about 3 hours in before I was compelled to lie flat on my back -- I wouldn't necessarily nap - but I had to lie still. Once the rest period was over - say 1/2 hour to a full 4 hours later - I could have a quiet 'regular' night at home. Many times I'd push the envelope - convinced somehow this was my fault for not trying hard enough. But it did not help things. After further investigation I did find some blood pressure issues and other things - but not one thing that explains the 'need to lie down before I fall down.'

I got to thinking how just because major surgery is rather simple to schedule - takes say less than four hours of anyone's day, can ofter be 'free' with good insurance - that it's made to be viewed as "easy" Take your pain pills - do what PT tells you and all should be dandy.

Well tell that to a body that (well for a knee say) just had it's femur and tibial ends cut off with a saw - got hammered into it some metal parts - add a but of glue here and there -- sew all the loose ends up -- I mean for crying out loud - your body whether you are 'asleep' and anesthetized or not was just hacked up to pieces and put back together......... And in 3 weeks you are to go back to work as if nothing happened? Something is wrong with you if your body refuses to cooperate?

NO! It's just not normal all this manipulation with orthopedic surgery! It's never given the gravity and respect due it. You go through hell and back. And that's irregardless of what the outcome is.

There is always hope however. Because the body works on it's own timetable. That's reason enough to stick it out and keep on keeping on. Even years and years out from a surgery healing can continue to occur. I am convinced of this. It's a matter of rest, ruling out other causes, respecting your body, good nutrition and tons of fluids, and coming to some sort of acceptance. Acceptance that you probably HAD to have the surgery to give you at least a chance of a better outcome. So don't beat yourself up over giving into surgery. Acceptance that you will never be the same after surgery - ever. The work the doctors do - is done and the body will do what it does. It may be helped permanently, it may be helped for a time only, it may be helped over the long long haul, or it may be harmed - it may have peaks and valleys from here on out - good times and bad....but it will never be the same.

Acceptance too - that a future surgery is undoubtedly in some hungry surgeons mind's eye for you to fix what didn't get helped with the first surgery --- and you have the chance to say NO. To protect yourself because now you are wiser as to what surgery does and how it impacts you. You may do better the second time around - or you may not. Every surgery is different - yet every surgery is invasive, disruptive and your body will respond how it will - no well wishes from a surgeon will change that.

Two years out from my surgeries I am able to work 4 hours a few days a week. I am under pain management. I face 4 revision surgeries because I had my joints done young. AND now I have all the same arthritic changes in my spine with surgeons telling me I must have the surgery. I'm pretty much sure I'm saying no to any more surgery -- I'll end up wheelchair bound perhaps - but I'll be dealing with the devil I know - and not putting my body through heck and back again. If increased functionality is why I had the surgery - and to stop pain - and the reason you had the surgery - well I am disabled from my career. It shows me that for me surgery each one of them has put me in a 'less strong' more weak place in life.

At least I have life for the time left I do. I'm happy for that. But it kills me to hear these stories of patients not being told the truth about the consequences of major surgeries. It hurts to hear of people's pain being out of control. Of surgeons writing people notes saying they can work - when they can't eek out more than an hour or two of functional time in a day post-op. There's a bigger picture here that everyone is ignoring. And that is - it doesn't matter what kind of surgery you put your body through - your body will have a voice. It will respond to it the way nature intended. Healing will happen most likely - but not according to any doctors perceived 'normal' timeframe.

I wish you continued healing - mind, body and spirit --- even if one part gets a bit better and another part gets worse - we only have this one day to live. Hang in there and enjoy life as it is now.... If we live too far in the past -- or too much in fear of the future -- we lose 'life' - which is only today. Only the very moment you are in now. Try to focus on the goodness in each day as best you can and believe in yourself and the love of those around you.... Not the life you expected -- but then again whose is!

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on 02/19/2011 8:41am

Bendy,
I am incredibly grateful for your post and I agree with everything you said. Self pity is on of my "go to" emotions and staying present with the Source of all life is the remedy. Someone said to me once, "If everyone in the world wrote down their problems and stuck them in a hat, would you take your chances reaching in the hat or keep your own problems?" Easy answer. I have clean water and indoor plumbing, a car, a loving wife and daughter, family close by, a roof over my head with electricity, etc, etc.

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on 02/19/2011 8:21pm

Hey matt this has nothing to do with the discusion but I would swear we are related somehow. My cousins the Murrells in Mississippi look exactly like you, Rick is the spitting image of you so you never know. Kinda makes a point to me to be genuinely concerned about how your doing. I swear I'm talking to my cousin Rick. Anyway hope only the best for you.

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on 02/19/2011 9:49pm

No family in Mississippi that I'm aware of. My mom was adopted at birth though, so you never know. You have a pain pump though, so you could be trippin'. :-)

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on 02/19/2011 10:05pm

I dont know Matt. they have the same sense of humor too haha

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on 02/19/2011 11:38pm

Hi again ... I didn't mean to imply any pity party was going on in this thread -- so sorry if that's how it sounded ... to me it sounded like an intelligent person wondering if there were any others with a similar set of issues post op! That kind of fatigue is mind-boggling... It's crazy when it begins to encroach on your productive time in a day... If I could run -- someday's I want to run and fly into bed - just to get horizontal and wait for things to 'right' themselves as fast as possible ... How weird is that - wanting to 'rush' resting LOL.... (so I can feel better again).

I trust you've seen neurology and they've given you that vague diagnosis? Is there a chance you can get to a major medical center like one of the Mayo Clinics? I only mention that - in that you can for most departments - self - refer. Or your doc can refer you. Then see a neuro doc.... that doc would then be your main doctor during your week long visit there (if it's that long or a bit longer sometimes) He could investigate your current set of medical records and then hear your history, do an exam, and then order all the tests possible to figure it out for you. The main doc can then refer you to his associates - say endocrinology or rheumatology - maybe physical medicine and rehab - like a one stop shop. Then you go home - and try what they recommend - you can bring your home primary care doc into the loop so they know what you are doing and why etc... Mayo will then send notes to your doctor and a copy for you as well - plus you can always just pick up your records as they are made available daily in medical records there. Anyway - just a thought --- Keep Smilin!

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on 02/21/2011 9:17pm

Dear Bendy,I only had to read half of your comment and im sorry you think we're all feeling sorry 4 ourselvesbut apparently you dont know all of us.in fact you have no idea .if your not looking 4 support y are you here

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on 02/22/2011 4:59pm

to mattn73
the symptoms you hav got sound very similar to mine,after lower back surgery .i would feel better some days and then the tiredness kicks in very suddently ,all i want to do is get home a soon as possible and lie down,when it happens i start to sweat all over my body,and according to my wife the colour drains from my face,and my hands are as cold as ice.I woul like to know if you have any of the latter conditions.Best of luck james

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on 02/22/2011 8:41pm

Hi to all my spine universe friends,nurse Nancy is back.I am having lumbar fusion next month and i am trying real hard to stay positive,but unfortunately fear keeps getting the best of me,and then i have to keep giving it back to God and the peace sets in.Philly,i was wondering if they ever did a lumbar discogram prior to surgery,and if the didn't why not?That would have at least identified if the disk itself was a source of pain,sounds like they should have taken it out.I have been a nurse 29 years and i have seen that many times the correct surgeries are not done for the particular problem,but then again doctors are human.Be sure to get a doctor you trust even if it is a new one.Take care all of you,i feel very connected to many of you even though i don't know you.
Prayer is very powerful ,so i will be lifting each of you up.
Blessings,
Nurse Nancy in pain.

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on 02/23/2011 10:57am

@ Nurse Nancy-

Funny you should ask about the discogram. This is an interesting story. After 3 lumbar steroidal injections, they still could not decide exactly which "structure" at L5-S1 was causing the disability. They knew that it was L5-S1, as evidenced by the physical therapy evaluation as well as the response to the steroidal injections. I actually would go from walking with a can to being able to go to the gym after the injections. It was a pretty stark contrast. Anyway, they did the discogram at L5-S1 and I did not feel pain. I was told before the dicsogram that someone would be by to take me to a CAT scan afterwards in order to see if fluid leaked out. This didn't happen and was an admitted oversight by the hospital. So, the result was that the discogram was negative. The thing is, my pain has never occurred during activity. It has always been in response to the inflammation that sets in the day after activity. Even right now, I could do my physical therapy and feel better for 6-8 hours afterwards. The pain would set in tomorrow. So, for some reason, something is causing local inflammation after I do compressive type activities. From al of the reading I have done, the only thing that can be responsible for this type of episodic inflammation are the chemicals inside the disc. If I am able to rest for 2 or 3 days straight, I will feel nearly normal, and will walk relatively normal for about half a day.

I am having another MRI this coming Saturday and my surgeon did mention the possibility of repeating the discogram. The only surgery that will fix my problem, if it is the disc, is unfortunately an anterior interbody fusion at L5-S1. I say unfortunately because of the risk of retrograde ejaculation. Still, I don't have many options. Going forward, it looks like I either have another surgery or apply for disability. I am a spacecraft design engineer for the government and I worked very hard to get where I am. I am not yet willing to throw in the towel and go on disability. If I do, I worry the resulting depression of losing all I had will be too much for me. If I have a second surgery and things don't get much better, I will probably feel differently

Thank you very much for reading my post and providing some advice. I really appreciate it.

@ Matt

I spent almost the entire last 3 days on my back because I was sick this weekend. I didn't go to the grocery store and was off Monday. As usual, I am now walking around almost normally. This has always been the pattern. I was wondering if maybe it was similar for you.

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on 02/23/2011 12:04pm

Hi Again....

To What Kind of Li....

I see you did not read the comment - either of the ones I wrote - because you rushed to an assumption that I was calling you out for a pity party. If you want to feel better about it at all I encourage you to read the posts that clearly do not -- and never did imply such a thing or say such a thing. Read it over - Matt's agreement with the entirety of the post - read it all and you will then be assured I am not against you. I forgive you fully as you made it clear you didn't read the comments accept a little bit of them.

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on 02/23/2011 7:32pm

James3,
Yes! My color drains from my face and my eyes sink into my skull. I suppose I look nauseous.

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on 02/23/2011 9:05pm

Hi Philly,Some very similar stuff except when i had my discogram they did test level 4 with no pain,when they tested levelL5 S1 i almost hit the ceiling with a 10/10 concordant pain.Sounds like they really screwed up with the discogram test,that sucks,but i guess there is no use crying over spilled milk all you can do is move forward.With DDD there is a lot of pain when you stand because your disks don't like the pressure being put on them,that is why i hate getting up in the morning some times because i know the pain will begin.It does sound like they should have removed that bad disk,but the good thing is you can have hope that the next surgery will correct things.
Keep looking up,
Many Blessings,
Nurse Nancy in pain

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on 02/23/2011 9:05pm

Hi Philly,Some very similar stuff except when i had my discogram they did test level 4 with no pain,when they tested levelL5 S1 i almost hit the ceiling with a 10/10 concordant pain.Sounds like they really screwed up with the discogram test,that sucks,but i guess there is no use crying over spilled milk all you can do is move forward.With DDD there is a lot of pain when you stand because your disks don't like the pressure being put on them,that is why i hate getting up in the morning some times because i know the pain will begin.It does sound like they should have removed that bad disk,but the good thing is you can have hope that the next surgery will correct things.
Keep looking up,
Many Blessings,
Nurse Nancy in pain

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on 02/24/2011 10:42am

Good morning Philly,
If anything you can laugh at the possible retrograde ejaculation that you may get interbody. That would suck! Hahahaha. Well, depending on what you're in to.

Alright guys, time for solution oriented strategy. Here's what I'm doing now and I feel really positive about 2011.

I am working with a chiropractor who practices Atlas Orthogonol. He sets the very top vertibrae. If the skull doesn't sit right then the imbalance works its way down the spine and everything is out of whack. Go towww.globalao.com to find a doctor in your area. There is no cracking or popping.

I also get an adjustment weekly from my D.O. My hips are constantly out of whack.

I've begun another round of Prolotherapy. I have ligament instability so I can't even do physical therapy. The prolotherapy injections will strengthen and stabilize ligaments.

Buy the book "The Emotion Code." Check it out on Amazon.com for $10. I've learned to release emotions that keep me stuck in pain.

Finally, I have purchased a Nikken magnetic back brace and three super mini magnets on Ebay. I truly feel that I will be back in action soon!

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on 02/24/2011 2:15pm

Dear Bendy,
I owe you an apology.
And I felt I should before I even read your whole comment.Im very sorry.On top of everything Im also adhd.I read the parts that jumped out at me like after 1 surgery you returned to work..I think that was jealousy.Ive worked hard labor all my life to raise 2 children myself.Now that seems like a lifetime ago.Im completely dependant on someone else.Then there all the money issues and on top of that these doctors pass the buck on my meds 1 sends me to my surgeon and they both drop the ball.Meanwhile Im the one paying for it and goin off on complete strangers.This whole ordeal has brought out the very worst in me.so again I am sorry

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on 02/24/2011 2:30pm

I can relate to you and the situation that you are going through, it's been 9 yrs for me and the Chronic pain that I have been in just unbearable. I have tryed everything and I'm still under and been under a pain specialist. I been on medication that just seem to ease it but that's it instead of doing a 10 plus I'm 15 each and everyday of life. I not getting another surgery, plus in 2009 I had a cervical neck surgery c-1-5 with titium plates, that surgery didn't help either. I have screws and a plate in my back, I don't know if you are faceing the same, but for 9 yrs this is a very long time for pain and very depressing. This will be my life, pain, pain, when I read the comments on hear just to know that I'm not alone and all we can do is just keep praying for the new system of things, which if you have strong Faith this is the only way out, Hold On!

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on 02/24/2011 4:21pm

@ Nancy

Thanks for sharing about your discogram experience. Yea, when they did the dicsogram at L5-S1, I literally felt no pain at all. So of course the pain specialist reported that it was negative. In addition, many years ago I had a cervical fusion at C6-C7. They did a discogram to diagnose the hernaited disc and I remember specifically feeling the 10/10 pain you mentioned. In addition, the x-rays showed the injected fluid leaking out of the disc, while it stayed put in the discs above and below. I got to thinking about this for the past few days. All they did was do a discogram at L5-S1. No one ever did anything at L4-L5. Since my problem seems to be inflammation, I wonder if for some reason I am just getting more symptoms t the L5-S1 level, but the disc problem might be at L4-L5. Both discs are degenerated on the MRI, but only L5-S1 is herniated. Perhaps if this MRI comes back not showing much, I will suggest this. The physical therapist who evaluated me said my weakness was at L5-S1, but she said there was some minor L4-L5 involvement.

I still have yet to find a person with a similar pattern as me, which is definitely concerning. If someone does have a similar pattern, where they feel better while doing physical therapy or exercising, but then worse a day later, please let me know.

@ Matt

I had never heard of Prolotherapy before and I honestly don't know if my problem is related to the tendons and ligaments. I looked it up online though, and it would seem that even the Mayo Clinic is now considering it an accepted therapy. perhaps it will be something to look into in the future. Thanks for sharing.

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