Please tell me your experience with fusions before I have one done.

I am supposed to have a 2 level lumbar fusion, but all I see is people worse off AFTER their fusion. Is their anybody that has any good news or results from them?  Getting very scared of it now.

[dakmba]

I know EXACTLY how you feel!  I am now scheduled for a lumbar fusion at L-5 in July.  I had a laminectomy in January and it did not work. I never got rid of the pain.  I have been through the ringer as far as myelogram, MRI's, etc.  I have been taking 6 Norcos/day (prescribed) and lots of Advil Liqui Gels. I recently started taking the Neurotin my surgeon prescribed for me a few weeks ago.  At least I can function with those meds.  I am presently not working so that is a blessing cause I know I would be in agony trying to get the hair, makeup and business suit pulled together every morning. Anyway, I let them schedule me for a fusion in July but I have NO INTENTION of doing it.  I was way too exhausted to discuss alternatives with my doc while I was in his office last week.  So I started taking the Neurontin a week ago and I have to up my dose today to 2 pills.  I THINK it is helping and I will take it for the rest of my life if it keeps me from having  steel rods and screws in my spine.  I also smoke.  The success rate of a fusion on a smoker is about 20-30% - not good odds at all.  Like you, I have read about too many people having horrible experiences after a fusion.  It seems even if they are pain free after the fusion it isn't long before they are experiencing worse pain.  I know I have read a few posts here this morning where folks cannot even get off the couch!  I am not willing to risk a bad outcome by having a fusion.  I'd rather use the medication to control the pain I have now because I know it works for now.  I am only 52.  Just having the experience of the laminectomy and how it stopped me in my tracks and changed my life was enough for me to say NO to anymore surgery.  I felt my lifestyle was taken away from me. I ave cried more over the last 4 months than I have in the last 20 years!   So now I just play the cards I have been dealt.  I can live with the pain I have now as long as I can use the meds to control it.  I am hoping building up the Neurontin in my system will result in my lumbar area nerves settling down and perhaps negating the need for the Norco.  When is your surgery scheduled for?

dakmba

[pofdog]

  I haven't met with any surgeon yet for the fusion. The surgeon that did my laminectomy in Feb recommended it, said he wasn't qualified to do a 2 level fusion, and wiped his hands clean of me. He treated me like a liar even after the new MRI and prrof their was a new herniated disk etc.  Even went as far as to say the person reading it was wrong. Kept showing me WHAT he did in surgery rather than the NEW issues. Anyway, my family doc. had scheduled appoinments (refereals) 2 x for me that have been canceled because my insurance don't cover inpatient and I am told I will need at least 6 days inpatient. I am waiting to get medicaid to go further. Hopefully find out this week. But all I hear is negative about fusions. I am on dilaudid now....they work well, but how long before I am tollerent of these too? And as far as I can research, there is only one more thing more potent.  I feel my liver is getting toxic also. I have been on vicodin ES all the way up the levels till the dilaudid now. Been on narcotics since last sept. and I think my liver is feeling them now. Very nervouse, but I can't function without them, but really don't want the surgery either.

[pofdog]

I was on my way out so I didn't have the time to explain all. It's not that my laminectomy didn't work completely. I told the surgeon that major disabling pain was BETTER after, not gone, and that since surgery, I have pain down BOTH legs instead of one. He treated me like I was lieing to stay on the meds because he knew I was addicted to the percocet before the surgery from my family doc, and he made me wean off before because they are so strong and like  the morphine drip if needed, wouldn't work.  Then he blamed the pain on opiate withdrawl (withdrawal), at which time I told him I was an ex heroin user from many years ago and know the difference in pains.  It took 6 weeks for him to finally order another MRI to rule out diskitus and recurrent herniation.  After getting the results of a NEW herniated disk on the same disk, he said the radiologists where I live where bad and wrong (both of them) and that I had no new herniated disk.  While looking at it on the film and me pointing it out, while he just got done reading the report, kept swithing to another picture showing me where he had cut. COMPLETELY denieing or even acknlowdging what I was saying, what the new report said, and the NEW herniated disk that was showing in the MRI.   I had to finally ask him to STOP and listen, (which he didn't like). I told him listen, I am not here to get pills, I have my own(which he was upset my family doc had me back on percocets because I couldn't walk again by that time without), i said I am not there saying that the new herniation and pain has ANYTHING to do with what he did, I was NOT there to sue him, that I JUST NEEDED HELP.  So he said he recomended a 2 level fusion and he was NOT qualified to do it. Washed me of his hands. Even upset my family doc. the surgeon treated me like that and even told him I had NO NEW herniated disk even though the new MRI saw it. Funny thing is, the surgeon at one time looked at me and asked if I wanted the MRI read again and I said yes, it was, and I never heard from him again.  You mentioned they all the the sucess rates and they do. AND so do I. I have studied alot because this is my 3rd surgery but 1st fusion. My surgeon acted like the sucess rate was 100% and even acknowledged he has about 1 a year that don't work.But with me, he was so sure. Like he was afraid of getting sued.
      My insurance is through medicaid, but in connection with our state, a state program.  It is simular and run by medicaid with less advantages.
      As for the morphine drip, I have had one before. People like me that are opiate tollerant and build up tollerant sometimes the morphine has NO effect and their is nothing more than they can do short of keeping you knocked out. This dilaudid 4mg is 8x stronger than morphine and I take 8mg.  I will HAVE to get off it somehow before surgery again. that is another concern..lol
   ANd I have had a mylogram, cat scan, all that other stuff before....and it HURT bad (the mylogram).  But I really think I need one now too.

[dakmba]

You need to force these docs to take the next steps into why your laminectomy didn't work.  Get a  referral for a mylegram.  That is the procedure where they shoot dye into your spine and take pictures to watch the contrast (dye) and how it flows (the procedure does not hurt). Next they will send you into another room to have an CT scan to get films of your spine "lit up" so they can see if there is compression somewhere other than the area where they did the laminectomy.  In my case, the dye stopped dead at the bottom of my spine  (It is supposed to run down your legs).  Anyway, I had my follow up with my surgeon who said he had discussed the blockage with a neuroradioligist.  He told me that my cauda equina nerve bundle was gathered up more tightly than normal but that wasn't the reason I still had leg pain.  I don't know about that but will do more research.  In the meantime I will get ALL my films and reports and have a 2nd or 3rd opinion.  I still think my problem is piriformis syndrome (the nerve that passes through your butt muscle).  Sometimes they can treat the piriformis syndrome with an injection and sometimes they can do minimumly invasive surgery (same day).  These docs are too fast to slam the hardware in patients backs and the fusion results in more pain if it fails.  This pain will be for the rest of that patients life - you have read the stories just like I have.   They scare the ****out of us.  It sounds as if your insurance isn't one of the major ones.  I hope you DEMAND the mylegram.  As a patient you have rights and responsibilities.  It doesn't surprise me that neurosurgeons won't touch spines that have been touched by someone else.  They don't want the liability risk nor do they want to have to become you pain management doctor. They also know the success and failure rates of back surgery.

I hope this helps you.  One other thing - if you do go in for the fusion make absolutely sure you are 100% honest about the amount of pain meds you have been using.  You have built up a tolerance, as have I, and you will probably need a morphine drip for a few days to handle your pain.  When I had my laminectomy i was surprised that they only gave me an oxycodone every few hours.  There was a time in the middle of the night that I asked the nurse for my med as I was getting really uncomfortable.  She said it wasn't time yet.  That really made me angry.  But instead of getting uptight about it and making the pain worse I just closed my eyes, did some deep breathing and didn't move.  I understand why they schedule your meds but i never want to go through that again.  Pain isn't something you can "see".  Pain is something you "feel". Sometimes caretakers don't understand how patients feel if they haven't been in chronic debilitating pain.

Take care Pofdog!

dakmba

  

[dakmba]

Wow!  You really have been through the wringer!  It sounds like you are having more trouble getting the right doctor to listen to you and the right diagnosis.
Newsweek has an article on pain this week.  If you don't have the hard copy you can read it on line at newsweek.com.  Just click on the left hand side of the screen where the magazine cover is that says PAIN.  This article speaks alot of pain meds, how it affects our nervous systems, the pain receptors in our brains and how pain meds have re-wired our nervous systems permanently. It even talks about spinal FUSION!  I know you will want to read about that since they have "no acceptable evidence" to support doing them.  That was a real eye opener for me!
At 6:00 this evening CBS (with Katie Curic) is doing a special on "Back Surgery-Do You Really Need It".  I know I will be glued to my TV at that time.  I have also made a plan to get off these pain meds and just use straight advil Liqui Gels.  Somedays I swear the more pain meds I take the worse the pain gets! I'll let you know how it goes.

dakmba  

[Crimson Ghost]

Hi (again) pofdog ,

You read, and kindly replied, to my post last week regarding my saga of back issues.  My MRI confirmed, as did the x-rays, that my 7 year old fusion at L5S1 is still rock steady and without issue.  Not to digress from my current thoughts on your post too much

[choppers]

I have had 3 surgeries on my cervical spine - a laminectomy at C5-6, followed by anterior fusion at 5-6 in 2000.  In Feb. 2007 I had another anterior fusion at C6-7 due to herniated disc using synthetic bone dowels.  I wish that I could say that the fusions have cured my problems, but realistically I wish that I never would have had the 1st one.  I had another MRI today due to continuing left arm and scapula pain, numbness and tingling and most recently excruciating lower back pain.  It appears that I have a residual disc bulge at C6-7 whatever that means, cervical spondylosis.  In addition, my MRI states that I have endplate spur formation, lumbar spondylosis and limbus vertebrae at L3 and L4 (if anyone knows what these means, please do help).  I am waiting now for the Dr. to call and explain this to me in english.  I am supposed to see my Neurosurgeon tomorrow, but I'm questionning now if he is the right one for me.  I went to him 3 times following my recent fusion complaining of continuing pain and he dismissed me as and never even put me into physical therapy.  My MRI reports don't explain much to me, if anyone can help with what I state above please do.  I only know that it seems that once they open you up and start operating on your spine, you are never the same.  I can say following my 1st fusion, I was okay for 7 years.  My neurosurgeon made the comment that that's about how long it lasts until the next one goes - so I wonder if it will just continue to domino the rest of my life.  I am only 39 years old and feel like I have the spine of an 80 year old.  Chronic pain is just a hard thing to live with and I only hope that there are options out there for me that won't end up with another surgery.  I do know people who have  had successful fusions so my comments aren't meant to sway you one way or another.  I think each individuals outcome is different.
Best of luck to you and if anyone knows what Limbus Vertebrae at L3 and L4 means, please let me know.

[natalie v]

1 Month po op from L4-L5-S1 fusion with instrumentation, no not everyone is worse off, lots of sucess stories. I;am feeling pretty good(til I fell at costco on Friday) I had ddd and herniation. I hope you got three opinions. I'm going to give you a new site that is wonderful in answering any questions & you get great support there. Spine-health.com go to the forum(or messages boards)
www.messageboard.spine-health.com

[alinpain]

i hear what your saying,i know your post was 4 months ago.just wondering how you have been making out

[alinpain]

once again i know these posts where months ago, but its important to keep these posts going for the benifit of others............i know everyone is avoiding the (FUSION) but does anyone ever research what a pinched nerve is doing to you,we are only masking the problem with pain meds nerrotion or nerve meds that calm them down,if we have pain something is wrong,,,,,,,,WE need to fix it not hide it..what about the outcome from waiting so long,....dont you think maybe we could be doing more damage
god bless-al

[alinpain]

i  jusyt had l4 l5 fusion done and was walking the next day,easyly mind you but i was up,i no longer have the pain i used to get from walking..............my numbness in my right leg and big toe in diminished,the only thing i woke up to was a left leg numbness  from my knee to my thigh,hip area,but that also is going a little,all i can do is pray and get my support from all of you people out there who are suffering and need a positive thought,
god bless-al

[sparringk9]

i just had my second cervial fusion 12 days ago. i had NO CHOICE i ruptured my C7 and i could not stand to be alive. there was no way i could hold my head in any position without screaming or crying. i would have cut into my own neck with a damn butter knife if i hadnt had the surgery. it worries me to see how many people have pain return after these surgeries. but to the NEURONTIN users beware! there is a big class action lawsuit on this drug...and if you just stop taking it you can start having seizures.

i  will have my first post op tomorrow...im worried. my arm still hurts and so does my shoulder...but not like it did. im going to think hard about what i am going to do to manage pain..cause like someone said they start jackin your spine around you are never the same. and yes pain meds will ruin your liver.

my strategy is to start an anti-imflammatory diet, swim, and walk my *** off. keep pain meds for just whn it is awful and try to be grateful for what is right.

i would LOVE TO HEAR from anyone who has had two neck fusions that is doing well. after reading these comments im about to have an anxiety attack.

[Photohappy03]

My quick story to share about my fusion, I know most of you may not have scoliosis but I had a fusion also.

I had harrington rod/fusion surgery for scoliosis almost 23 years ago. In the last 10-15 + years, I have had terrible complications from the surgery, neurosurgeon calls it flatback syndrome. My 2 rods start at T3 and end at L2, they took bone off my left hip at the time of surgery to fuse the spine.

I have been in and out of doctor's offices, counselors, physical therapy, seen many massage therapists, chiropractors, multiple prescription use, and also have used many modalities of alternative medicine. Because I suffer from chronic pain all the time, fibromyalgia symptoms, myofascial pain (tons of knots in the muscles...everywhere), pinching and burning of nerves and especially around the rods/fusion and my legs, extreme dizziness/vertigo, migraines that last for weeks, TMJ disorder, bulged disks, abnormal forward curvature (at least 30%) of the cervical spine, degenerating disks, pre osteoarthritis, arthritis, bursitis, sciatica, numbness , burning, and tingling of extremities, muscle fatigue and weakness/atrophy, edema, shortness of breath, thyroid issues, gall bladder issues, hypoglycemia, poor concentration, memory problems, moodiness and depression, sleep issues... I think that just about covers it all :(  I never had any pain or any issues before my surgery, even though I was only eleven.   Many other scoliosis friends that have had fusions are suffering with the same things as well because of the long term outcomes.

[LGafterlevel11]

Have had scoliosis all my life. At 45 yrs. my spine was collapsing. Had 11 level, yes 11 level surgery 9 months ago. -5 all the way down. Fused L-4 to L-5; L-5 to S-1; S to I.  Blew L to S one week later, yes it like bullet. Emergency surgery filled L to S  with cadaver dust.

  Best thing I ever did. I grew with scoliosis; however, now I am straight.

2 titanium rods (about 20") and 50 - 60 screws. Have the best nuero/ortho/spine surgeon that specializes in scoliosis.  

Keeep researching, researching any surgery. Keep interviewing specialiastists.

I was determined to never have surgery. Huge decision for hubby and myself.  Most educated decision we ever made. Now over 50 and life is good.  LG