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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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Avatar universal
I had my last back surgery which was my fourth in 1994 in Eau Claire Wisconsin. it was on L4-S1 and was a front and back fusion with hardware and it lasted nearly 10 hours and the most painful of all my previous surgeries. With everything they did to try to prepare me for this surgery mentally, I was not ready for what was waiting me on the other side of those operating room doors.
Never in my life had I ever experienced such pain! I was in critical care for several days following this surgery and had tubes going everywhere! My mother could only weep as she looked at what was left of me and I could only grit my teeth and pray someone would find some pain medication that would help me manage. I felt like I had been run over by a Mack Truck and that every bone in my body was mangled and broken. I honestly could not tell where my pain began and ended.
When they released me almost a week later I was still in unbearable pain and as the months went by the pain was still very present, although not nearly as intense as those first days. I questioned my doctors if I had made a horrible mistake I would pay for for the remainder of my life. They assured me that I had to get over the hump and that once I did I would find I would begin to improve.
I did find this hump and I am happy to say that I have been virtually pain free with my back ever since! Although it was a hard road in the beginning I am glad I had the surgery. That said, I truly feel badly for anyone going through it, but I have since heard that the procedure has improved since 1994.
My doctor is one that is part of the MAYO Health System and he is still with Luther where I was blessed to be able to go when I needed this last surgery. This will link you to his site for those who are close enough to seek him out. He truly is one who you can seek for that second opinion and I truly would trust him above all my other doctors to treat me again. he corrected what they could not and I am whole today.
His name is Dr. James Manz and you can connect here...http://www.mayohealthsystem.org/mhs/live/page.cfm?pp=locations/medstaffoutput.cfm&orgid=LM&nav=Med .
GOD bless and I pray you all a quick and total recovery.
Helpful - 1
Avatar universal
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
Helpful - 0
Avatar universal
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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Avatar universal
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.
Helpful - 0
Avatar universal
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..  
Helpful - 0
Avatar universal
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..  
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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!
Helpful - 0
7721494 tn?1431627964
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.

Helpful - 0
Avatar universal
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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Avatar universal
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.
Helpful - 0
7721494 tn?1431627964
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.
Helpful - 0
Avatar universal
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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Avatar universal
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!
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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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Avatar universal
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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Avatar universal
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
Helpful - 0
8976007 tn?1413330650
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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