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lower back fusion problems

From: maanameg - on 11/18/2010 11:13pm

Hi. I am wondering if anyone is or was in the same boat as I am. I had a disc removed back in 1998 and I had a fusion done in 2001 (near the L4 L5 area, lowest part of back). I was fine for a couple years but have been experiencing pain since. I can't stand more than 10 minutes, exercise is no longer in my agenda along with many other activities I used to enjoy. It's wearing on me mentally as well as physically. I went an seen a spine specialist and he suggested I get the hardware removed but it's a 50/50 chance it's fused. If it's fused, they remove the hardware, another 50/50 chance that I'll feel better. If it's not fused, they sew me back up and I'm back to square one. He pretty much stated that there is nothing more that can be done. I've had all the shots imaginable and nothing works. NOTHING.. I've been in physical therapy, nothing. Chiropractors refuse to work with me because of the hardware, I can get partial therapy from chiropractors but they can't focus on where the hardware is. I refuse to take pain medication because it totally messes up my digestive system, thought process, everything. I miss a lot of work due to the pain and my boss is becoming furious with me because of it. This pain causes a tremendous amount of personal stress and job related stress. I''ve been reading a lot of comments (horror stories) on here and I really don't want to have the hardware removed and go through another surgery. People like us with chronic back pain, seems like there is no hope, well the majority of us. Has anyone been through what I have and if you have what did you do to try to get better? Thank you.

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on 11/30/2010 2:50pm

I saw your posting and I can understand your frustation. I have had the same surgery and it is painful.I had a laminectomy w/instruments. 2 rods 4 screws. stenosis, stenopsis, sciatica. donor bone.it was also OK for two years and the pain progressivly got worse,eventually it began radiating down my legs and went back to spine center. They never told me the fusion may only last 2 years! I was livid! My surgeon never recomended removing the instrument. Eventually the pain was so bad i couldn't stand, i would have done anything to get rid of the pain,My surgeon suggested another surgery, I had it! this time he did explain the second surgery only had a 50% recovery rate. He was right! it made me even worse + it felt like someone butchered me. I haven't been the same since, the pain is 40% worse and i am on pain meds,there isn't a treatment out there that works at all, + beleive me I've had them all, my pain comes from compressed nerve root pain,w/ the instruments they can't get around them to give me nerve blocks. So my suggestion is to deaL W/ IT AS MUCH AS YOU CAN! I'm sorry i can't give hopeful advise, but that's my story! You're situation may be totally different, but I am now disable! I can't work, or walk and have to rely on pain meds the rest of my life! And they are even trying to deprive me of them! Not my doctor.... But the government! So If theres any way you can go down a different path .... I sincerely advise it! AGAIN: Your situation may be better, I hope i have given you food for thought, It's your decision... but try as hard as you can before going through what I have gone through, Good Luck! It's a tough choice!

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on 12/17/2010 4:19pm

Hi L. Dove. Wow, I am soooo sorry to hear what you are and have been going through. That is just horrible. I think I am going to take your advice and just deal with it. I'll just keep my hope in getting injections to try to relive some of the pain. Again, I am sooo sorry. :(

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on 12/19/2010 1:28pm

maanameg, I am truly stunned that you have such pain from a fusion so long ago. As well as the advice given with the hardware removed. I had fusion L4-L5 exactly one year ago. I am in your shoes where I can't stand more than 10 mins. I had discussed with surgeon b4 surgery and 3 months after about having scews and hardware removed. I can feel the pressure and he could feel them in downward facing dog position because I am thin. However, he said 98% of his patients are not as flexible as me so that was supposed to make me feel better. NOT. That is like telling me I could be an astronaut instead of a prima ballerina! I was really ticked off with him. So I saw a pain management doctor in his office and she referred me to a marevelous PT place that deals with a lot of stroke victims. They pt session is an hour instead of usual 1/2. While I love my PT, she thinks I'm in good shape, I just need toning. I see my neurosurgeon in a week or so to see about gettiing the hardware out. Your stats above really scare me. How can it not be fused after all this time?

I'm so sorry you feel so crummy, but you are the first one I have read that hardware removal was a 50/50 and didn't get immediate relief. I know how difficult it can be as well as physically painful, but please try to keep exercising even just a little each day. It will help mentally as well as physically. You could lie on floor and just do clams or lie on side with your spine and legs straight and pull your stomach up and in and lift your leg up and lfex down 10xs. This will help to build your core muscles and give more support to your back and hence less pain. Especially since you don't take pain meds (wise choice). I'm not keen on chiropractors, so I cannot comment there.
Yoga and swimming would be excellent exercises for you and really help you mentally.

May I suggest you get another opinion from a neurosurgeon and have a MRI and CAT scan done to determine whether fused or not? My radiologist knows the pain I have had and she looks real closely. My neurosurgeon doesn't always agree with her but I trust her findings. I have pretty much resaborbed on right side but he said it doesn't matter because he always overpacks to allow for that.

Don't give up!! You need to kep fighting until you get satisfactory answers and treatment!

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on 12/21/2010 9:59pm

yes,my friend,i feel your grief,i am a person with the same outcome,i agree that strong physical therapy and daily walks,along with light diet to keep the lbs off is crucial.too much weight gives me problems,working now to get rid of 8 lbs,gained over the turkeyday feast--lol. good looking foward and hang in there,warrior.

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on 02/22/2011 5:30pm

Carrie,

First let me start about by thanking you for the helpful tips toward strengthening my core muscles. What did your neurosurgeon say about having the hardware removed then? I just finished graduate school and will now be focusing on trying to get a healthier back. I will get another opinion from a neurosurgeon. There just has to be a way to see if I am fused or not. Who would want to be cut open just to see if they are fused? It's ridiculous. Thank you so much for your support Carrie! It is GREATLY appreciated!

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on 02/22/2011 5:31pm

Leonard,

Thank you too for your support. As I mentioned to Carrie, I am going to focus on getting my 'life' back! Thanks again! :)

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on 02/24/2011 10:25am

Hello Maanameg. I am so sorry you are in such pain. I had an anterior and posterior fusion at L5-S1 on 9/2/2010. My recovery has been great. It is really scarey to think that this could be gone again in a year or two. I had an MRI done at 3 months post-surgery and the doc said I am fusing well. I think they will do another one after a year to make sure it is fused solidly. I can't believe your doctor told you he would have to do surgery before finding out if you are fused! That may not even be the problem. I know a lot of people who have had lower spinal fusions end up having problems with their spine above the surgical site, and then need surgeries to repair those problems. I am glad you are getting a second opinion. Please don't stop until you find a neuro that will order the diagnostic tests necessary to find out what is causing your pain. You need to do some research to find a highly recommended spine surgeon. Best of luck to you.

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on 02/24/2011 10:46am

Hello Texasgreat,

After doing more research on the fusion, I can't believe the doctor said that either. But he did. I can't wait to get a second opinion and hope there is light at the end of this tunnel. Thank you for the link and thank you so much for your response and support, I really appreciate it. :)

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on 02/25/2011 1:16am

in oct. /2001 , i was told i had degenrative disk disc disease . that discs L-4 / L-5 / S-1 low back surgery -
laminectomy was needed . *fusion / rods / cage / 6 pedicle screws inserted . that it would sure fix the problem . operation was done by a *orthopedic surgeon . the surgery corrected the numbness down my leg and foot dragging . but the pain was just as intense , and increased over time . the doctor recommended physical therapy - 36 visits , plus 3 steroid injections , acupuncture many times , all over a two year period because of continued pain . all the while , doctor prescribed oxycodone 5/325 short acting , oxycontin 20mg long acting . my pain level was never less than a #4 with the pain medication . then pain and numbness began from my *right hip down to my ankle . surgeon didnt want to do more surgery . finally , in frustration i went and got 3 different doctor's opinions , who all suggested the hardware be removed . they said i should take the new MRI and their individual reports back to the surgeon that did the operation . upon reading their findings / MRI , he immediately got me into surgery in oct. 2003 and removed the hardware . several pedicle screws had backed out of bone . to this day , i still take oxycodone 5 /325 - morphine 30mg X 3 daily to handle the pain . still never less than a #4 level *with meds . it is hard to stand , walk , lay down - for limited amounts .
sleeping is not good . i try to walk in a pool that gives brief comfort often as i can . the surgeon did apologise after the seond surgery that it didnt turn out better . doctors since then have all told me i don't want another surgery . to much scar tissue from two serious surgeries . only way any would consider it , was if i had numbness again . i am now 67 , living with this for ten years . its not been good .
in conclusion , i would suggest anyone considering *back surgery ... do get a 2nd. / 3rd. opinion ,
at least one of them from a *neurosurgeon i was told . good luck , we who have had back surgery wish you well sincerely .

carstens

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on 02/25/2011 11:02am

Hi carstens/arlie,

Thank you so much for replying to my post. I'm sorry to hear that you are still struggling with all your pain. I truly understand. I have had this pain since I was 21 and am now 38. I was young you know, I didn't know better to get second and third opinions. No one was there to 'watch out' for me. If I would have known now what I didn't know then, I don't know if I would have let them put foreign objects in my body. The neurosurgeon that did both the surgeries, I can't find him. I tried everything. I'm pretty good at researching on the internet and there was nothing on him. At the time however, his profile was on the web, now it's not there. After all these wonderful replies that I am receiving, I am going to get 2nd and 3rd opinions now. So after you had the hardware removed, it didn't relieve any pain at all? Do you feel worse since getting the hardware removed?

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on 02/25/2011 5:24pm

ms. -
yes , the pain and limits of just living were worse after the first surgery .

arlie

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on 02/25/2011 5:53pm

yes,and i feel your concern,but at this time i can only offer my solution as i am strongly motivated to accept the hardware and move on to strengthen the muscles around the area. saying that , i must tell you i am strongly committed to vigorous strength exercises to build the core,and carrying a lot of weight,doesn't help us, say focused on building up,not on the pain--------think positive, you will be surprised at it all. here is the now (focus).

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on 02/26/2011 12:23am

maanameg -

i wish i could be more insightful that you will get better with another surgery , but most of us havent had much luck with additional surgery in the lower back , as far as pain goes . i have talked with various doctors about the high pain level "being there" in the fusion area *after surgery . - WHY ? told it was / is : just part of the outcome . hence , daily *prescribed pain reduction meds , and pretty much "learn to live with the problem" ... is quite often what you are told later . i wish i would have been told what to ask of the full picture of how it would most likely be / before the operation . truly wish i would have asked for a second or even third opinion . but most of us , like myself back then ; go on blind faith that doctor will fix the total problem good as new , as he said he would . i believe he truly wanted to . at the time , i hurt so bad i was willing to believe anything . i still look to find options that might help ? i never stop trying . good luck to you , and maybe you will have a better outcome .
we all sure hope so .

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on 03/02/2011 7:21am

In 2005 I had removal of the L4-5 & S1-2 with bone replacement from my hip & a cage put in around that area. I was told the surgery had a 80% success rate. I was in the 20%. Never any better after the surgery. Started having what I call "spells" , 6 months after the surgery. I would have sudden onset of extreme nausea/vomiting,diarrhea,hot/cold,feeling like I may pass out, blood pressure gets dangerously high(don't have any problems with high blood pressure normally), and a feeling that I am not going to make it through these "spells". The 1st couple of times, they though it could be a virus. As they kept happening, they thought it could be panic attacks. Panic attacks? As I am playing with my baby grandchildren-who are my world? Almost a year from the initial surgery, I landed in ICU after one of these "spells". The only thing different within that past year had been my back surgery. I begged the surgeon to take the cage out to see if that helped. It helped for about 6 months-then the "spells" started again. No one has ever figured out why & I continue to have them sporadically to this day. I can be sitting watching a comedy on tv with my husband & wham-it starts-no rhyme or reason.
As a registered nurse, I did alot of research before the surgery-and knew there wasn't a high success rate-but was to the point that they had tried everything else with no success and I was still in pain & unable to work. I did NOT want to lose the job that I loved-so opted for the surgery. It was unsuccessful-I lost my job, & am still in pain & have been on disability the whole time. I am now having episodes of excruciating pain & once again-no one can figure out why. The surgeon says by what he sees on the latest MRI-I shouldn't be in THAT kind of pain-so they are doing the epidural steroid shots(again!). I've had 2 so far-no help.
This all started in 2004 & I have never had a second opinion. I have decided that once I get the cervical & thoracic MRI's(already have the lumbar from 1 month ago)-I am going to seek a 2nd & maybe 3rd opinion. What can it hurt? I am not ready to just give up and remain on narcotics & still be in bad pain.
P.S.- Before the bad pain started in 2004-I was VERY healthy-rarely even going to a doctor once a year! What happened & where did that person go? So very frustrating! Just remember to keep fighting for yourself-as no one else will!

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on 03/05/2011 5:19am

dear maanameg -

Hello , me again . after reading your situation , i got to remembering some more of my own particulars
leading up to getting my 2nd. operation . you might consider what i did . *after 1st. operation - laminectomy -*low back - L4-5 / S-1 fusion / hardware / cage ... i still had more severe back pain than
before . i was told it would subside "in time" . i was given 3 post-op followups as i went along , but after
the 3rd . visit - i was clearly told "mechanically , your discs are now fixed", but the pain after surgery is "just going to be there" because of so much "nerve cutting / and lots of scar tissue" : with this type MAJOR surgery , that leaves a chronic pain level . so pretty much ... i was told to "live with it". i lived with it alright for the rest of the year , but i finally went back to the surgeon about the terrible pain still in my low back . he simply told me there was nothing more he could do . ??? i left thinking i was
going to go find another opinion , *for sure ! please bear with my story , there is a point to what i am telling you . over the next ten months i went and got 3 opinions from other orthopedic surgeons who
listened to me / checked me over / looked at my origional MRI . all three said to go back to the Ortho.
surgeon who did my surgery , show him "their findings" . when i asked - would you operate to remove the hardware ? *they all declined . one of the three did recommend i go to the hospital and
have a Radiologist doctor do a "Mylogram" test". he said it showed in fine detail , better in ways than a MRI would show . so i did . there was a tv in front of me ... that showed the radiologist and me as well ... all the area around the fusion / hardware / and 6 pedicle screws . We could actually see where two of the pedicle screws were moving slightly / backing out of the bone material as i was taking breaths . the doctor's comment to me was ..."i guess those other surgeons were right , you should go back to the surgeon who operated on you". so i went to the surgeon with my *mylogram test report , along with the letters from 3 doctors of their opinion recommendations / written in doctorese of course . i'll never forget the conversation i had that day with him . when i walked in , he said first thing ... "arlie , i told you i couldnt do anything for you then . so why are you here ?
i said i wanted the "hardware taken out" . and doctor replied "it usually isnt done , there is a lot to
removing the hardware once its in place , and a lot of scar tissue is there from first operation . so NO he didn't want to do it he said . i said before we go any further , i think you should read these findings from 3 other orthopedic surgeons , and a radiologist who did a mylogram test on me / @ several pictures enclosed . so he looked them all over ... and said very nicely , so "when would you like it done". i said "look doctor ... i just want to feel better / i am so miserable 24 / 7". that i am not here to cause you trouble". he did tell me there would be no quarantee about the pain , but he would do his best . i told him "its all i ask". so two years to the day practically , i got my 2nd. operation to remove the hardware . and of course more scar tissue was created ... the pain level same as was before . as for the doctor ... after my 3rd. post-op followup , in his office he told me he was sorry things didnt turn out better for me . it hurts every day . there are limits as to what i can do . but i can get around slowly / with a cane . i have a wonderful wife who has been there for me . it could be a lot worse i know , as i read so many of these stories of younger people trying to get thru each day .
good luck to you all . no one understands it until it happens .
i hope things improve for you maanameg .

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on 03/06/2011 1:33am

Hi Maanameg. Im so very sorry about your situation. My problem is at the c5/c6 level. So please dont feel that i can even begin to understand the pain level you are experiencing. But i have been dealing with my own spinal issues for over 2 years now. I have both researched and tried many many different therapies and alternative treatments.
After reading all of the wonderful comments regarding your condition, i really believe CarrieR is right on the mark. Please try and do whatever you can to avoid anymore surgeries! Im sorry to tell you that most of these doctors are not your friends. They hand out these surgeries like office candy. Its a joke. But thats another subject.
Back on point, have you tried 'inversion' at all? The natural traction created by your own body weight may give you some relief. Plus as a bonus, it will open up the other vertebrae which have not been fused. If you take to it, an inversion table is very inexpensive.
I so hope that you can avoid another procedure. I wish you all the best in treating this painful condition. Good luck.

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on 03/18/2011 4:20pm

to anyone with chronic low back pain "after"... *Fusion / laminectomy :

has anyone ever experienced this happening as well ? lately , i have been having a deep fatigue / ache feeling coming on around my fusion area L-4-5 / S-1 . *it just starts suddenly middle to lower back and drains all my strength. i must then go lay down until it lessons . doctors can't explain it , or maybe i am describing it wrong ?
it comes on after a short walk to the mailbox , or often any short distance . not every time , but enough . this is added to the usual constant burning / aching sensation across my lower back . i've had two surgeries , one in 2001 hardware in , 2003 hardware taken out . i am 67 now , i am so tired
of this .
alc

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