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post spinal fusion surgery pain

I had spinal fusion on my L5 5 weeks ago, and i am now hurting now more then i ever did before surgery. My Doc said he had the surgery and was back to work in 2 weeks. At 2weeks for me i was hurting so bad i thought i had messed up my fusion. So i went to see my my doc and had an xray and was told it was fine. He gave me a RX and said it was my last one. So i have had nothing for pain since 3 weeks after surgery. Right after surgery in a drugged state I told him my leg hurts worse (I don't remember saying it) and his answer was " Then we shouldn't have done surgery"
I had no problem with my right leg priop to surgery, but now at 5 weeks i have to drag my leg, and it hurts unbelievably, i can't even lay on my right side. Sometimes it feels like ants are crawling under my skin. I can't sleep, 3 times now my leg hurt me so bad i got physically sick.
Also my Doc's nurse says pain is just a state of mind..........My pain is very REAL!!
Is this normal?
How long should i be on pain meds?
Thanks Dawn
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I had a neck plate put in in 2002 and then the 14 vertebrae fused 2012, now for the past week I have had horrible headaches at the base of my spine, I hope this is not from either plate. guess I have to finally give in and go see my doctor. My fear is it is a tumor as my sister died of a brain tumor, guess I am just scared to find out. Hope you get some relief, my friend just had a stimulator implanted in her neck and gets botox shots for her head pain
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Thank's for your information.  Sorry you lost your sister.My husband sister also died of that. I would like to try Botox injections.I did go to a Doctor he was nice but, pretty elderly. He said his nurse would do the injection of Botox,but I think I would be more at ease if it was done by a doctor. Hope you can find out about your headaches.
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I had a fused neck 5,6,7. I had allot of burning felt like I was on firer. I started taking Neuropathy Support and the burning has went away.to try this call 1-888-840-7142 I hope you get the relief you need. Not fun. I still have sever headaches everyday.
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So very sorry to hear of your pain. I had a fuse neck 567. I Have sever headaches everyday. I feel that there is know hope. The doctor's are making allot from people in pain. The dollar is so important.they don't seem to care. Most have never been in pain, someday it will be their turn. I pray you feel better soon.
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6923774 tn?1386127606
I had my L4 L5 S1 Fusion on July 9th 2013,  I felt pretty good for the first 2 months, we went camping in our trailer the end of July and again in August did a little waking, but mostly relaxed in my lounge chair it was nice. September started PT on October 12 went in to my surgeons office for my 3 month check up and was told then I could do anything now, ride my quad, go hiking, pretty much anything ,so I kept pushing in it with walking about 1/4 mile, PT, rode my quad a couple of times and about two weeks later I was back in his office because I started hurting in my lower back, hips and had pain going down my legs. All he could tell me was "It's nothing to do with the surgery" and "he didn't know what was going on".  Wow! I was speachless.  My surgeon said I could go get injections, try chiropratic and/or PT and pretty much have a good day Wow! I told him I was going to PT that he was the one that wrote the perscription for me to go " Oh he says"  I walked out of the office feeling like he just dropped the ball. In November the pain increased so much I have been taking pain meds 4 X a day. It's December still in pain hurts to stand or walk very long finally, I have an appointment to see a Dr. in the same practice for injections and/or possibly an MRI, CT scan.  I beginning  to think I was better off living on injections then having this surgery.
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Wow sounds like my surgeon, after the 14 vertebrae fused and a partially paralyzed leg and arms not working right (I drop everything) and more pain than before the surgery I just got a shoulder slump and a "oh you have fibromyalgia now". It has nothing to do with the surgery he said. I said I see your walls are covered with letters from patients how well they are doing, where are the failed surgery letters? and he said oh I have no failed surgeries and I said well start counting then as I am number one.
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I'm 13 years old and had spinal fusion surgery almost 3 weeks ago. I'm in more pain than I could ever imagine! When will it get better? I have no motivation. I used to play basketball and I obviously can't now. I still don't have any bit of attention in my family because my little brother gets it all. And my teachers are being mean about giving me my school work, because they think I'm perfectly fine to go back to school. Nobody thinks it hurts to have this surgery. Also I'm so overwhelmed with my school work that I can't think straight. My teaches give my stuff I can't even do. They give me at least five pages of things to do every day in each subject. And on top of all this, I can't sleep at night. I can't find a comfy spot. It just hurts a lot.  Does this get any better?
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I know it is hard to believe, but unless something went wrong during the surgery you will feel better. First push yourself to walk. Go a little bit further every day, even if you have to take baby steps. Before you know it you will be back to your daily routine. The next time you see your doctor ask him/her when you will be allowed to play basketball again. You might be surprised.
As far as school goes, ask your mom or dad to arrange a meeting with your guidance counselor and the ESE placement specialist for a 504 plan. This plan should spell out your disabilities and why you cannot do all the work you are being given. It is a legal document that your teachers have to honor. Cheer up. I have been in your place. I also have a doctorate in education leadership. You have legal rights that your parents need to know. Things will work out. Let me know what happens.
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I just found  your post, and want you to know I'm sorry for all that you have went through. I 'm also in allot of pain. Headaches 24/7.IIn 2005, I had fused neck 5,6,7,.I've tried about everything physical t, pain medication like Oxycodone,over the counter drug's. I've had shot's three time's, and burning off of the nerve's on left Side. The shot's and burning off of nerve's did not work. They don't want to give pain medication and want to try shot's again. I'm back and try the shot's.It dose cost me allot for the co-pay, and surgery room Doctor, and  drug doctor. I was thinking about going to lazier surgery. Thank's for your comment's.If You can give me any feed back I would be grateful . Hope you get relief soon.
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I know the burning, I felt like I was on firer.It's was pain like you get when you iron cloth's and burn your figure but this burning is from my neck to the back of leg's. Try telling someone about the burning and they just can't understand. I started taking neuropathy support formula b1,B12, wither-alpha Lipoiic  and it has  made the burning go away. At least try this, and I pray the burning goes away for you. The phone number for this is 1-888-840-7142
This Vitamin cost me 49.00 a month but if you get relief it my be good for you to try.
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6742871 tn?1384329752
Girlfriends mother after cervical spine surgery, back and neck pain from the upper half of the increase, right arm numb fingers and heavier than before surgery, chest choke. Has 23 days after surgery. I do not know is not a normal situation, it is now very worried girlfriends.
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Hi,thought I would share with you I got new medication Hydrocod/APAP 325mg it has been only two day's and I don't feel the head pain. I just hope this keep's working.Maybe you can try this .good luck!
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Hope you are feeling better.Sometimes you feel like you are the only one in pain,but allot of people feel your pain. Wish your teacher would lighten up on the home work. You get better real soon. Have a Merry Christmas!
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I am going to ask the Dr if I can see a neurologist, I know the surgeon has screwed me up royally. I am in more pain now 20 months after the surgery, I think he hit and cut some major muscles and nerves he never should have touched
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I've had 2 neck fusions @ c5-6 and c6-7.  Still have neck, shoulder, arm pain  all the way down to my hand and fingers to include pain, weakness, numbness, tingling.  It seems all of the actually got worse after the surgery and worse with time.  But it's been so long who knows.  I'm on Opana ER, Norco, Topomox, Colace (of course Right everyone? ha ha ha) Was on vicodin for a year before surgery so haven't had a regular bowel movement in 5 years.  I have 6 year old twin boys whom are very active.

I have tried PT, spinal injections, and continue the medications.  However, I have just learned of a Dr called a Physiatrist?  Has anyone heard of or been to such a Dr? I'm done with Physical Therapists since I feel I'm way out of their realm of knowledge.  

Any input or advice would be helpful as I would like to get some form of a normal life.  I have conceded that I will never be whole again.  I was involved in a rear end accident by somebody talking on their cell phone.  He walked away while I went on to have neck surgery and will suffer for the rest of my days as well as will the rest of my family by not having the wife and mommy they deserve.   But I don't complain (to them) ha ha ha and give it my all everyday.. when I can.  Bless you all and may you find peace and less pain somehow. and perhaps look up a Physiatrist??
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I was just wondering since a year has passed how are you now?
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Thank You. I will try to dodge surgery.
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I wish the people would mention what state they are in and
at least the hospital they went to.

I have degenerative disk disease since birth.  Am going on
70.  Have had surgery on my neck.  Fusion on c1, c2.  Now
the other disks are dissolving as well so need more surgery
Had CT scan a week ago and now need a MRI to see if
more surgeries are possible.  I am in MN.

Mugwump
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Hi, I am in California in Rocklin, had the horrible surgery in Sacramento and the rehab in Roseville, It has been almost two years now and I still am no better, am worse than ever. I can barely drive and barely walk, wished I had never had this horrible surgery. It has affected everything I do in life. They rushed me through the preliminaries and never really explained this and that and all the things that could happen and that I could be worse than before the surgery. I tell everyone not let anyone touch your back and especially never do 14 vertebrae fusion. I am 63 this year and walk like I am 93
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   Hi,New nere......Has anybody else had loose screws on a lumbar fusion repaired?I was wondering what can be done..There's a bump where the screw is and even the weight of a bedsheet is unbearable sometimes.The elastic band on underwear is out of the question.I've had so many surgeries by now,this seems irrelevant,but it's kinda like the straw and camel deal.I'm just too chicken to give up.Would appreciate any help.
      Thanks
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Sure sounds like that to me, It has never happened to me and it better not with all the screws I have. A simple xray will show if that is what it is.
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Hello..New here and from MA.. Had spinal stenosis so they did a laminectomy at L3  in 2005 in Boston..Should have stopped there but 2 different surgeons told me I'd need fusion in 4 to 5 years so I might as well do both together..Big mistake..I would never recommend fusion to anyone..They fused L-3 to S-1 and for 18 months all was great..( results of the laminectomy ) ..Then I started to get muscle pain in the area of the surgery in 2007 and it gets worse each year..I have tried everything you can think of..
Injections,chiropractors,massage,yoga,palates,acupuncture ,drugs of course, 4 different PT's ,  exercise, stretching , etc. . I can't walk or stand for more than 15 minutes or so without pain..Nothing works but a TENS..I just wear it when I go for walks or working on my feet..If not for the TENS I have to sit & stretch every 15 minutes or so.. Hopefully a TENS ( mine are low cost ones from Amazon in the $60.00 -$100 price range ) can help some of you.. I'm told the pain probably comes from cut muscles and scar tissue but no one is sure ..I'd be very interested if someone has experienced the same post fusion pain I have and dealt with it effectively .
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I have tried the tens unit since my surgery two years ago and it does nothing. going to a pain clinic this Thursday, hopefully they can help me. I can only walk maybe 15 steps at the most before I have to sit down. I know every store with a electric cart that I can use. I hate that I ever did this as well,
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I'm 46 years old I just a l4 and 5 twenty days ago I don't feel the pain I had before my surgery but I'm feeling lots of tightness on my back muscles it's that normal to feel I'm confused
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I'm 46 years old I just a l4 and 5 twenty days ago I don't feel the pain I had before my surgery but I'm feeling lots of tightness on my back muscles it's that normal to feel I'm confused
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I am so bad now I start caudel injections the 21st for the pain
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Ice, ice and more ice.  Ice helps to decrease inflammation and in turn helps with the pain. It will take 6-12 months for this to resolve but it will. Patience is the key when it comes to back surgery.
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Been two years for me, nothing will help me as the surgeon screwed me up so bad. Going to have a second caudel injection June 2nd and I am scheduled for an MRI to see what is the problem with my arms and leg.
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I had the same surgery and have extreme pain in my groin on the left side and am urinating every 10 minutes and constantly fell like I have to urinate. I have been on 100MG Duragesic patch.After the surgery the pain was so bad I couldn't move my left leg without unbelievable pain.Dr. gave me Dilaudid and it keeps me pain free.Because of the patch now I can't have the dilaudid .Living with constant pain.I need to work to survive and I fear I'll never be able to return to work.Anybody else have this problem or know of a solution I'd greatly appreciate it.
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Spinal fusions suck, I had mine 3 years ago and made the mistake of having hope.  I thought I'd be back to work in 6 months.  My 4 level fusion was a success, I do have less pain than before the surgery.  Before the surgery I was stuck in bed unless I loaded up on pain killers.  1st 6 months couldn't tie my shoes, 2 and 3 years later, pain everyday, you know constant, return to work, yeah right, I can't sit upright for more than an hour, if I drive an hour or more my back gets aggravated and hurts really bad for a day.  Fentanyl patch 100mg with opana for breakthrough pain.  It's no way to live, no matter how much or little pain meds you take you build up your tolerance.  Life is over is I know it.  No more lifting at the gym, riding my motorcycle or snowmobile or home improvement projects.  Welcome to life as a dreaded coach potatoe.  Yeah I walked a mile a day, I walked so much I started having foot problems at 42, did pt therapy being an x gym rat.  All I can say is at least I'm not in a wheelchair.  Life *****, thank God I own my own company & don't have to work or I'd be on permanent disability.  Watch Hulk Hogans bio, his back is that bad w/o a fusion, ah it *****, nobody ever told me our bodies wear out by 40 if you exercise too much.  Get the fusion there are no other options if you're lazy do the therapy and you'll be happy, if you're active you need new hobbies, don't try suicide it could always be worse, get new hobbies.
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I'm probably too late for this post, but I've been having a hard time finding those who are experiencing the problems.

Thanks,
http://www.spinesurgeryindia.com/
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8976007 tn?1413334250
i have horrific injuries after a fall from a roof 5 yrs ago and i am so glad i did not have insurance at the time because if i would have then they would have done a bunch of surgeries.  
the one thing i would have benefited from is physical therapy.  no insurance = no follow up care at all.  i fell no less than 50 times in the first 6 weeks after coming home.  that messed me up even worse.
i am in excruciating pain as it is, but at least i don't have screws coming loose, etc.  the frustration you all must feel having surgery that did not work.  cannot imagine.  
now that i do have insurance i will be AVOIDING any fusion surgeries in the future
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hi peoples im new to this forum but im a old hand with neck fusions iv had a c7 c6 in 2005 after a car crash and wos in a second crash in 2010 and thay had to do c6 c7 fusion the first wos 110% sucsess and i had a great 5yr run but the second is about 70% sucess. so now physio rehab the ussal road to recovery back at the gym have other issue's with the right side of the body but have **** happens so now im looking for any tips for the gym and drug free pain managment tips im sick of feeling like a zombie im back to the pain clinic next month but first hand tips are the best

if anyone has any pre-opp questions or needs help feel free to ask
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I agree, I'm in the same situation. The Doctor who performed this procedure has been out of town. I am due to see he in several days. I guess it's my fault for not asking more questions. I would not recommend it.
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Hello to Everybody,
          I had L3 to S! fusion with screws and rods in the back, and spacers and those bone cages being put in through the front, about 2 months ago. The recovery seems to be going ok. My difficulties seem to be that I have rested flat on my back for a day or two, felt fairly pain free, then stupidly did lots of walking and standing, bending and even climbing a tree!!!
   I went back and forth until I stopped and thought....duh... you need to just stay horizontal as much as you can and don't do any excessive walking or standing, and no bending or climbing trees!
    My brother had the same surgeon, Dr. Dryer at CTSI, Austin, and now , after a year of recovery and a year of  doing normal stuff...even lifting lawnmowers, etc, he's fine! I'm a little worried about the Pain Mgmnt Dr not approving more of my 10 mg in 60 more days, but , hopefully, the pain levels will be much less...if I can stop doing stupid stuff like bending and twisting and walking for hours!!!
  The hardest thing for me is to live alone and doing all the shopping, cooking, cleaning, washing, since BCBS doesn't cover a caregiver. So I just buy frozen dinners. Lucky for me, I'm retiring post office in a month or two. My (soon!) new wife is a real strong, loving and disciplined woman...good cook, healthy and with good old fashioned morals.
I cringe at the bad luck and doctor and health horror stories here.
  It would be interesting to hear about whether anyone has had success with medical marijuana. Strange that no one who lives in those states has mentioned it.
  Good luck to all you guys. Remember, Hope dies last, so, as long as we are alive....there's still hope!!!
take care
steve
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I had 3 disc removed from my c-spine. A cervical fusion from C-2 to C-6. This was done November 2011. I felt better still with some pain. Now my pain is becoming unbearable. My surgeon told me that the operation would be substituting one type of pain for another. I had to have the surgery because the disc were pushing against my spinal cord. I have gone the pass several years rarely taking pain medication. Now, that is going to change. The intense pain is now keeping my blood pressure high. I am now on 3 blood pressure medications. I am very pleased with my surgeon. I'm happy with the success of my operation. I wish there was a way to be pain free without the help of pain meds. I went a long time taking them maybe 3 months out of a year. Because of my blood pressure staying high due to the pain, I'm now seeking help from a pain management doctor. I hope he can manage my pain with minimum narcotic pain meds. Sometimes we do have to look at the big picture. In my case, my options were take the operation and deal with some pain or have the disc pinch off the spinal cord risking paralysis. I chose the pain and being able to walk.
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Hi MaryEllen,
I hope after all this time u r doing better! My advise would be to go to a Pain Management Doctor! Their job is to keep your pain under control and you are not looked upon as a "druggie"!
God bless you dear, and I am praying for you!
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Mzzsilky, I can empathize to some extent.  My pain is not quite as severe as yours but I have been dealing with similar issues for 20 years and grew up with a parent who was permanently disabled from many back issues, surgeries, procedures, etc.  my mother has had moderate success with her s c stimulator.  I hope you were approved and they got the leads in the right places for your pain relief!

I lost my job due to extreme pain not helped by my fusion, almost a year ago now.  My life feels it is on hold.  I am coping with the fact I will never have a baby myself- I know there are other options but I have dreamed of having lots of babies since I was a kid myself and dedicated my career to working with kids- and my marriage is crumbling.  We are broke from the loss of my income, my huge student loan, the cost of COBRA, and all my co pays and neither of us made much to begin with.  Honestly worst of all is the pain.  It never goes away.  I barely sleep because of it and when I can fall asleep it wakes me up soon after.

They keep trying different meds and antidepressants but I would be lying if I said I don't often contemplate just taking the rest of my pills and finally resting, forever.

Have you found any relief??
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7721494 tn?1431631564
Regarding your final statement -- I too have felt this way.

The problem is in today's pain management. Where as 20 years ago the goal was to reduce pain as much as possible, today the goal is to treat without appearing to over treat.

Unfortunatly, most who treat pain are being hackled with artificial limits on the amount and type of pain medication they can prescribe. This leaves chronic pain patients, especially those with long-lasting opioid tolerance, living with much higher pain levels.

Higher pain levels leads to increased disability, frustration, hopelessness, depression, and suicidal ideation.

I admonish you to hang in there, and get tougher about your pain management program. You are in charge, no matter what your doctor has to say. It's your pain -- take control, even if it means to taking action against your current doctor. Let them know how dissatisfied you are. Let them know that you're being under treated.

In the mean time, look for a new pain doc.
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I can only guess that no surgeon EVER read these posts.  Yes, they are busy, but I did not read anything other than lots of painful patient experiences.

Where is some hopeful advice/posts for some of these patients? There should be more tracking of the ages of patients & best case/worst case recovery times & did this fix/not fix the problem. There are no guarantees but what about being informed? This could make the patient can feel better about making their decision. Also, what is the worst case scenario they have encountered for those who may not recover as quickly as explained by their surgeon. How confusing and frustrating to not have all the information necessary for something as serious as having your neck or spine disc/discs removed and replaced with a new and different disc & put back together with parts that resemble items in a tool box. How weird?

My mom just had neck fusion surgery, post 4 weeks, 3 days. Still quite a bit of neck pain & was led to believe that pain would be minimal and for a short time. In her case, no neck brace...not even when sleeping? She is in her mid 60's. I would think some amount of mobilizing just after a surgery such as this is a good idea. It is depressing for her because the Dr. made it sound like it was no big deal, easy recovery. So anxiety & depression kick in because of the unknown & as usual not much consolation from the office team. As usual...too many patients, offices to big, communication lacks, patient care is 3rd party managed just like everything else has become & here we are. Just hope to never have to be involved in healthcare. Lives have been saved I realize but it healthcare is too unpredictable due to lack of communication, sensitivity and information for the patient.

I am not a physician but why do their ideas of recovering always vary so much? Why do they not agree on the best way to recover? Are they cutting costs for insurance or what? I have seen so many varying ways they prescribe recovery. That scares me as well. What will be the recommendation for recovery (therapy, neck brace, etc) & ask him/her what are ALL the different ways to recover? Why do you choose this method?

It is overwhelming to think of having surgery & just want to feel normal again.  So, I offer some advice since we apparently are on our own, ask these questions above.I assume they will be annoyed by these questions but it is your body & health measures your overall happiness actually more than anything. Yes, even money.

I feel the Dr. does not care much afterwards. They do not even bother to see you in your post surgery appointment and make the nurse explain the x-ray & listen to your complaints.  Almost seems intentional because they do not want to deal with all the complaints & pass the buck to the nurse or whatever their title is. Also, makes the patient uneasy not seeing the physician who did the work. Is he hiding from something or what? I am sure they are busy with surgeries & everything else but they should be in the room with the patient listening to any complaints because they are the hands who did the surgery.  

Faith, Truth, God. That is all to all this.
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I had a fusion between the t2-T4 in September of 2014 and really having a hard time wth this, having a lot of pain, balance, now having some stabbing pain.....been there physical therapy, pain management, etc...I wish I never had this surgery because I have lost so much of my life of doing things that I loved to do that I can't do anymore because of this pain, the doctor put me on Lyrica which helped a great deal but made me gain 15 pounds in a week so I had to go off that and switched to Gabapetin which I broke out in quarter size hives from so know we are trying Toapmax which helps a little bit but not enough to doing what I want to do, anyone else having any ideas? Please need advice
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7721494 tn?1431631564
When you say you've "been there" with pain management, then who is writing your medication scripts?

This is one area of the specialty of pain management  -- they find new ways to use medication to treat pain. So I don't understand what your "pain management" experience was like.

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Yeah, your all ok, BUT! We really shud put a Stim in you, cuz you aren't hurting Girl! Its all in your head as well! Can you not get 2nd opinions? I live in the States & its what I would do. Then SUE of course, Just joking! My Doc told me to sue him!
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Just want you to know you are not alone! we are all living our own hell!  Did this "Butcher" order any physical therapy for you during post-op period or let me guess, he is a neurologist!  Your legs hurt from neuropathy- you need Gabapentin....STAT! For this "doc" not to admit it means "IT" failed and it cannot accept that.  
Think of these docs as the GEEKS you would of beat up on the play ground and now they are demi-gods! Treat them as such...you have they power cuz w/o a patient they have no practice!  Also, find a website were you can GRADE DOCTORS...warn others NOT to go to him!!! Best of Luck, Your are in my Prayers Dawn.
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My 1st surgery went very well until 15 days post op I got a spinal fluid leak and my Doc was on vacation, his P.A. told Mom "its normal"! To soak towel after towel? 3 Daze later I went to my surgeon, he took 1 look @ me & said get to hospital you need surgery to seal the leak & as I was leaving I heard him screaming at the PA "Get the  F outta here I'll be lucky if she lives!"  I worked hard to make it back to 80% normal-tho I suffer w/ extreme migraines now. So, Faith! She will get depressed & You frustrated...But Faith Bella, you are both in my prayers.
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3 Weeks post op l4 l5 fusion and the hardest thing for me is learning to slow down'' i'm a miserable patient and i tend to do to much walking and general every day things without twisting, lifting and bending. but what i'm finding is i get really sore around the operation site that forces me to lay down for a few hours, the good news is my old pain symptoms seem to of cleared up but i read the horror stories of failed fusions and that makes me bring on the pain, so i just try and avoid the negative feedback. The worst fear me was painkiller addiction so apart from the hospital stay i don't use any pain killers ( apart from a beer or two) which makes me feel every twinge and jolt of pain. i will say every day has been improving and i recon it will take 6 to 12 months to have full confidence back..  
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3 Weeks post op l4 l5 fusion and the hardest thing for me is learning to slow down'' i'm a miserable patient and i tend to do to much walking and general every day things without twisting, lifting and bending. but what i'm finding is i get really sore around the operation site that forces me to lay down for a few hours, the good news is my old pain symptoms seem to of cleared up but i read the horror stories of failed fusions and that makes me bring on the pain, so i just try and avoid the negative feedback. The worst fear me was painkiller addiction so apart from the hospital stay i don't use any pain killers ( apart from a beer or two) which makes me feel every twinge and jolt of pain. i will say every day has been improving and i recon it will take 6 to 12 months to have full confidence back..  
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I hope everything is OK with you and you are still here.  Your child needs you no matter what.  I have been in pain for 10 years and I know what I am talking about.  Three surgeries later my nerve pain is relieved but not the muscular skeletal.  I will pray for you.
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Sorry to hear all the horror stories - you all have my utmost sympathy. Nobody knows how awful spinal problems are unless they've had one.

I'm f27 from North Wales, UK, and have degenerative spondylolisthesis (my spine broke when I was a year old and pain has gotten worse each year). It took the first 16 years of complaining to my GP about the pain before they finally stopped fobbing me off with 'growing pains' and got me an X-Ray.

I had L5-S1 decompression and fusion with a hip bone graft last July. It's now been nearly 10 months and my pain is exactly the same. Surgeon says everything is healed nicely and he can't understand why I'm in pain. Also, he said I need to come of morphine (the only thing that helps) and take codeine and paracetamol! I'm so sick of being treated like a lying druggie. I am not addicted to morphine - it gives me no pleasure whatsoever. I get enough pain relief to not want to kill myself everyday but am still unable to be upright more than 30 minutes or walk more than 20 metres. When they told me to come off liquid morphine I did easily, even though I was able to walk for over an hour when I had it. I miss the walking but not the liquid morphine.

I'm massively happy with the surgery (done in Oswestry) and I stand up without hunching now. My other surgeon was great and went through all the details stating I will never be pain free but the surgery could help improve it a bit. I feel more confident in the security of my spine but the pain is simply still there. It feels more like the muscles along my spine are knotted and tense as rocks and nothing helps (except alcohol or swimming). It feels like gravity is a super force crushing down on my spine. Lying down is less painful but I have literally never known what it's like to be totally pain free.

I wasn't offered any physiotherapy afterwards which I thought was weird. I went to the pain clinic who told me they were unqualified for post-fusion back pain. Then I tried the hospital I had surgery in but their pain clinic is only open to the English and I'm just over the border in Wales.
I'm extremely lucky to live in a country with free health care and I think it's shocking and disgusting for people who live in a first world country like America to be told you're too poor to count. You guys need to fight for your own NHS so you're not In the hands of b*stard insurance companies.

Don't know what to do now. Does anyone else have muscular back pain like this? Did anything help?

Thanks guys.
Amy


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I've tried a LOT of different things in the past for pain relief and sleep

I can offer suggestions for pain relief:
* Research 'Kratom'. It's a natural relaxing (or energising, depending on type/quantity) plant from south east Asia. I literally cried the first time I tried it. Nothing from the doctors works as well. Unfortunately, it's expensive and easy to get tolerant of and is under scrutiny of the law in my country right now (which is stupid. No casualties in thousands of years of Kratom use). I order from a British company online and they deliver it Royal Mail the next day. Red vein Kratom is better for pain relief- White is good for energy. Green is a mix of both.
* Try a TENS machine. I find this slightly helpful. Small electrical pulses through the pads stuck to your skin. Pretty cheap to get online. Helps keep muscles getting too tense. Battery operated and relatively hideable under clothes.
* Try medical marijuana if you are living somewhere it's legal. Helps distract you from the pain, relax you and give you a good sleep. Hoping legality spreads to the UK soon.
* Learn how to practice mindfulness. There is no end of free online videos, apps and audio guides to get started. It helps pain, stress, tension, depression, insomnia and anxiety. It's not just hippie mumbo jumbo! Many scientific studies prove its effectiveness and many GPs recommend it now. I've used and enjoyed 'mindfulness Liverpool' on YouTube, an app called 'Headspace' and an app called 'Breathe'.
* Get inventive! It's not long term but a few minutes relief can be a mood booster. I put on a back support belt and bought one of those plastic eggs with a toy in from one of those little vending machines for kids. I opened the ball/egg container and tucked each half the the egg (rounded side to skin) either side of my spine where the muscles ache most. Now I have two pressure points held in place by my back support belt and when I lean back in a chair the pressure of the egg pieces really help roll the tension from my muscles! (Or just pay for a massage!)
* Yoga. But only the poses you're comfortable with. I searched YouTube for post-fusion yoga exercises and tried some successfully. I only do yoga on my back as being upright hurts but it's amazing how many you find you can do just lying down. Look for some core strengthening exercises you can manage and ask your doctor if you're uncertain what's safe for you.
* Lying width-ways on the bed with my toes hooked over one side and my head and arms hanging over the other seems to give my back a good stretch and ease some pain. Look stupid doing it though. If it works, it works!


For sleep:
* Buy a bag of dried hops and lavender. I find this quite helpful. Get it on eBay or any online store selling dried flowers etc. Hops smell a bit unpleasant but the dust from them are well known to induce sleep as well as lavender. Put them in an organza bag or old pair of tights and slip it inside your pillow or somewhere near your face.
* Valerian root tea. Get it from H&B, any health food store or even Asda sells Dr Stuart's version. I find the tea very relaxing but tolerance happens quickly and there's nothing worse than needing a tea-wee just as you're finally nodding off. I've tried tablet form but it had no effect on me.
* There are lots of guided sleep meditations on YouTube. You may have to search a while to find one that suits you, I for example, tend to go for good visualising ones but without mentions of spiritual guides or chi/spiritual/Angel/crystal type stuff because that's just not my thing. Try searching 'body scan mindfulness' on YouTube. My favourite is Body Scan on the Breathe app. For some reason, concentrating on each part of my body individually helps me ease the pain a bit and fall asleep. Maybe it will work for you?
* Podcasts are great for taking your mind off some of the pain at night. In the day there are many things to distract you but at night when it's quiet it's easy to end up focusing on it. I've not slept without earphones in for two years! I recommend the "Thinking Sideways" podcast - unsolved mystery discussion to get your frontal lobe going and help distract you from the pain.
* A cushion between your knees if you sleep on your side. With certain spine problems this really helps ease the pain. I made a neck cushion for myself out of a foam pool noodle! Works a treat for neck pain.

Hope some of this is useful to someone :)
Amy
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st. louis, MO