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Stressed, angry and tired of pain.
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mainebestlife posted:
Went to the doctors today to update my back condition- it has gotten so much worse it is difficult to walk- which scares me. The MRI doesn't show a disc (no surgery needed) so I was sent back home with no follow up appointment- nothing. I'm so frustrated with the backwoods mentality of the medical community here in Maine. It seems if its not some condition they can cut you open to fix- there's nothing wrong with you. If an MRI doesn't show a disc there's nothing wrong. He did say he believed I had pain- there's just nothing he can do. It's so frustrating- they say I have " failed " back syndrome from the surgery... and basically want me to live with it no matter how bad it gets. (I'm allergic to narcotic pain meds so no real relief) I say fix the "failure" you created in the surgery. Its just one of those days that I'm not dealing with all of this very well. I'm exhausted and tired of the pain. It is good to be able to come vent here- I have no one to talk with about this that truly understands living in chronic pain.
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bj1208 responded:
Hi -

yes I can feel your pain as I too have failed back surgery syndrome - no reason why there has been more pain now than before my surgery - just one of those that the surgery didn't fix all areas -

You should see a PHYSIATRIST Pain Specialist as they do go deeper into pain management than regular pain clinics -

http://www.spineuniverse.com/treatments/what-physiatrist

There are other alternatives than can be done besides narcotics - TENS Unit or SCS (Spinal Cord Stimulator Implant) - these 2 items may benefit you.

I hope you can find some pain relief~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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aprilrose9 responded:
Hi mainebestlife,

Yum, everytime you post, I can't help but think of seafood! Anyway, on to the serious stuff. Like bj, I too have fallen under the basic umbrella of FBS. I don't want to bore you, but I am not sure how much has been explained to you about surgery and chronic pain. Of course, I am no expert, but I know I tiny bit. First, look at the anatomy of the spine and see the bony prominences(sp?-not sure it has been a long time) which some area of bone is cut during surgery. Joints are made with all these curves so they fit together and provide support. When they cut to get to the spine, the anatomy is forever changed and the support is lost and causes other structures to have to compensate. You will also end up with arthritis at this joint.

Nerves are cut during surgery and when they heal they do not grow back together in a straight line. Think of it like an electrical wire bundle (the ones with many wires all together which are then twisted). Once the nerve is cut, the ends can end up like the frayed wire ends. Then lots of little nerve endings get trapped in the scar tissue which forms from having soft tissue surgically cut. The scar tissue is inelastic and the nerve endings then send the pain signals to your brain. Despite being small, the nerve endings can cause big pain. The physiology of your damaged nerves also change.

With chronic pain the other portion of your central nervous system also changes (CNS=brain and spine). I am sure you know the basics, but I am trying to be clear. The brain ends up with "grooves" which form with chronic pain and the pain now has a faster pathway to deliver pain signals to the brain.

Like you, I was never told the true negative outcomes to surgery. When I had my first spinal fusion and came out of surgery with a "flatback", I thought that was a pretty big thing to have left out of the pre-op discussion. If you have had a spinal fusion, this will add to more stress on vertabrae above and below the surgical site, since every level is important for proper movement.

Spine surgery ruined my life. I was much better off with 2 herniated discs than I am with the SI joint pain and the bilateral leg pain. Sadly for you, medication allergy problems have taken away one avenue of possible relief. I am sorry to hear this and feel very sorry your options for some relief are not there for you.

Do you walk without an assistance device? If so, it was a big step to start walking with a cane at age 33 for me, but I couldn't stand all the falls I was having. A cane may help with some support, muscular weakness and stamina.

I wish I had some good news for you, and then it would be good news for me, too. In 25 years I cannot believe someone has not come up with some answers for those of us who have been ruined by spine surgery. They are fast to do the surgery and fast to get rid of you as a patient once you are a mess. Some physician who would come up with some new form of treatment or some surgical answer would be a hero in this world.

If you get any answers, could you please, let me know?,
 
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katellawellnesscenter replied to aprilrose9's response:
I can feel it. Back pain is very irritating. Consult a physiotherapist and learn exercises good for back pain. Lifting things from the ground may cause more pain, avoid that. Maintain proper posture and sleep on a firm mattress.
 
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robinwilliams responded:
There are many exercises suggested by physiotherapists that you can perform to treat your back pain.
 
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EINDIAMANT responded:
No need to think they are only "backwards "thinking in Maine ..lol I live in PA and have found this exact mentality here as well.
Do get online and search for Pain management specialist and than make appointments with multiple and go see all of them to hear the different opinions they may have ,make sure to bring your x-ray or MRI's .
Steroid injections have helped a lot of people as can some drugs from narcotics to antidepressant .And believe me when I say to you that I now what you are going through. Please make all attempts to get your Core in the best shape it can be and I too know that is not always easy to do .
I don't know your age but I am 51 I had L1/S5 surgery in 2009 and have been dealing with this chronic pain since than I have had injections and meds and physical therapy.....any and all other one can think of, however just because it has not really worked for me does not mean any or all of these wont bring you some relief . I have decided to stop all the narcotics the beginning of the year because they brought only a fogged head and extra pounds to my body I have gained 25 pounds since the surgery and now they use THAT as the reason for the pains !! the hell with it I will do what I did before the surgery, work out and eat healthy (which I did after as well ) but now I will concentrate on my core and lower back use the vitamins I took before and in General just "suck it up" and work through it .Do not do Surgery unless you see several Doctors and they all say the same also look for the spine institute places on line I am sure there is one near you . a Inversion Table helped me too ,( also I am in the process of eliminating almost all processed foods in my diet to help rid my self of the inflammation I can already feel a difference ) you can buy them online as well starting at 100 dollars or try craigslist . I am sure like almost all with this problem you have gained weight so for sure try to loose it ,use hot pad and Icepacks alternate when it gets bad but whatever you do don't stop moving and staying active ,ride a bike ,elliptical or use a treadmill ,Pilates and Yoga can help with the stress ( believe me chronic pain should be at the top od the list for stress related problems) give it a try ,a serious Try and let me know how you are doing ,I am here for you to talk to about this anytime you want just let me know
 
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trs1960 replied to aprilrose9's response:
Aprilrose I love reading your replies. It is amazing to look at a spine; the spinous process, the facet joints, the Foramen transversium, disc annulus and the disc nucleus pulpous... Make hip surgery look like tying your shoes.

Each one of the prices of the spine must interact and to make matters worse encased inside of all these moving parts lies the freeway of the CNS.

I don't add a lot lately because between you and the other core members there's not much more for me to say and I hate it when someone just restates somebody else's statement.

For Mainesbestlife, I know your frustration and this may take some time, but I applaud a surgeon that refuses to do surgery. If the MRIs are clean, but the pain debilitating, I may seek out a physiatrist that will spend more time with you trying to understand why you hurt instead of just "yes" or "no" I can operate.

As you read through here you will see many of us wish we would have spent more time looking for alternatives before we had surgery.

Best of luck

Tim
 
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trs1960 replied to EINDIAMANT's response:
EINDIEMENT. Every 10lbs of body weight you gain adds 100lbs of stress to your spine.

I struggle keeping my weight down and can tell you that I fluctuate about 10lbs. I can tell a huge difference in pain levels from the upper end of that fluctuation to the lower end.

Tim
 
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mainebestlife replied to trs1960's response:
I find that when I go to a new Dr I get my hopes up that they will find "something" and be able to correct the problem to end this misery.

That last trip to the new Dr sent me reeling back thru the emotional cycles of being angry, rebellious (I rebel against the "disability" - doing things I use to be able to do, like walk thru the mall but no longer can just to see if I can do them or not, then end up on bedrest for days) then I end up feeling so hopeless and then depressed. It took a few weeks but I'm back in a place of acceptance, "accepting" this pain and managing it. I'm sharing my story of these emotional cycles because perhaps it will help someone else who has experienced the same emotional cycles.

I'm so grateful for this forum because I'm not sure I would of ever shared this info with anyone otherwise, I find it difficult to talk about my pain, disability and emotions... sometimes just writing it down sharing it -really helps. Thank you all for your concerns, tips and advice.
 
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trs1960 replied to mainebestlife's response:
I can't disagree with you You can't miracle shop cuz there is no such thing
 
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trs1960 replied to EINDIAMANT's response:
Endoment. I re-read your first reply on this post and I just want to compliment you for an informed and pro-active approach. I know you're right on your approach. If you can get healthy it sure helps!!! Great job

Tim
 
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Anon_177341 responded:
Hi there,
I feel your pain, pardon the pun. It's ok that you vented on here. I have had everything done to me to try to alleviate my back pain: surgery, acupuncture, injections, PT, medication. I don't know what else is left. I know what caused my pain, and there is no treatment or cure for that, either. I never had any pain in my life until last year when I am pretty sure I caught a very bad strain of West Nile Virus that attacks your central nervous system. (I guess I could have died, so apparently I am lucky?). I am miserable and depressed and was always a happy, healthy, active person with a great job. I feel everything has been taken from me. I hate to whine, but feeling crummy everyday makes it hard to want to do anything, and this has gone on for 13 months. Does anyone have any answers as to what I can do to better help with the pain? I have been taking hydrocodone for almost a year and did a trial with oxycodone. They kind of help, but I don't want to live on opiods forever. Sorry to complain. Any answers or ideas are welcome. I may have to have another surgery...maybe laser? I have no clue. When your health has been taken, it saps your life from you. I have never been like this. Thanks for listening!
 
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aprilrose9 replied to Anon_177341's response:
Dear Anon 177341,

Have you tried neurontin for nerve pain? If not, perhaps neurontin in conjunction with the opiods would give you better relief from the pain.

You are not complaining...you are explaining!
 
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aprilrose9 replied to trs1960's response:
Hi Tim,

Problem is we had surgery before WebMD was there to help!
 
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trs1960 replied to aprilrose9's response:
Yeah and mine was instant traumatic injury. So once the tree hit me I was lucky to be alive!

I can't complain about my medical treatment as it was the tree that got me, my docs have done their best. I only had one really bad pain doc. He put me on fentanyl and sent me on my way... Ironically he almost did cure my pain, by nearly killing me!!!!!!

T.


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