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3 years post lumbar spinal fusion/ Chronic pain with increasing intensi...
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3 years post lumbar spinal fusion/ Chronic pain with increasing intensity and urinary problems.

Three years ago I had a 2 level lumbar/sacral spinal fusion.  I had suffered with several lumbar back pain, spinal stenosis, degenerative disc disease and spondylothesis for 20 years prior to my spinal fusion.  After surgery, I had no relief from the pain.  I was told that my body had built up scar tissue around the surgical site and that was the reason for the failure of  pain control.  I have had fairly adeqaute pain control with MSCONTIN 60 mg BID and Diazapam 5 mg for muscle spasms.  The pain is across my lumbar sacral area, with right or left hip burning and weakness and severe burning and tingling in my left leg.  Recently my pain has worsened and I would put it at a level of 8 on a scale of 0-10.  I am waking up every 2 hours at night with pain. My primary care PCP gave me 15 mg Morphine IR for breakthrough pain and to take the Valium every 6 hours. She also advised me to take 100 mg of Trazadone at bed time.  If I take the Valium every 6 hours I am constantly sleepy.  As it is I fall asleep around 8PM. I have also developed severe "charlie horses" in my left calf and foot that may last 2-3 minutes and leaves me sore for days.  I have a reevaluation of my pain with a pain specialist later this week.  At the same time that the pain increased I started having urinary frequency and incontinence.  I am urinating 20 or more times a day with no control at times.  I saw a urologist today.  He did a cystoscopy and found nothing. My urinalysis was clean.  I had bladder repair 7 years ago and all is well.  My urologist wants me to convey all of this to my pain clinic physician and have him respond to the urologist.  The urologist will contact me at that time.  My fear is that I may have a neurogenic bladder.  I also have problems with my bowels in that I am always constipated and have been since the spinal surgery.  A recent MRI shows a slight bulge between L4 and L5 which is just above my first fusion.  I was a Pediatric RN prior to being disabled due to the chronic pain.  I am scared and of course I want to know what my possible diagnosis is.  What are my options and what kind of out comes can I look forward to.  I am tired of hurting and now not having bladder control and constant voiding og small amounts of urine, always less than 1/3 Cup, but I also fear further spinal surgery and the possibility of further scar tissue development.  After the spinal surgery I also had a series of injections, epidurals, blocks , etc to see if I could get any pain control from these.  None of those gave me any relief from pain for more than 4 or 5 days.  I would appreciate any insight that you can give me and suggestins.  Thank  you very much for your time in this matter
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Avatar_n_tn
Almost 2 years ago I had a spinal fusion at L5-S1. I understand all too well the problems you are having. Since my surgery the pain has gotten to the point of on a scale of 0-10 it at a constant 9-10, more often a 10. Unlike you I never had back problems before this, I fell at work and compresed my spine. I have been to a paim management Dr. before and after my surgery and had just about every diagnostic and block that we know of in Nursing. I have been referred back to a surgeon on 3 different occasions and been denied. The pain Dr. tried to force the Medtronic Stimulator in my back, which has more downfalls and risks, which I found out from Medtronics, when I spoke with them. I was on Kadien for awhile with 15 mg morphine for breakthrough pain. It did no good. So now my PCP has me on 80mg Oxycotin BID, Percocet 10/325 Q4H prn for breakthrough pain, Valium 10mg QID and Glycolax for the problems with bowel movements due to the pain meds. And nothing stops the pain, it may lower it one level on the pain scale, but no more. I was diabled last year in April and put in a wheelchair in Jan 2008. I wish you luck and hope things work out for you.
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454186_tn?1388978568
All of symptoms is due to soft tissue injury around L4/L5/S1/S2.,nothing about urine infection, L4/L5 lead to severe "charlie horses" in your left calf and foot,constipation.S1/S2 lead to urinary frequency and incontinence.

Compare with other therapies,Deep and intensive acupuncture can help,but most important is find reputable acupuncturist ( Medical doctor backgrond)
Good luck!
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Avatar_n_tn
I had L4-L5 lumbar fusion 9 weeks ago.  In the last two weeks my pain is alot worse. Went to the doctor today only to find out that the disc she replaced is starting to rupture out again!!!! The doctor will xray again in a month and said my only option is more surgery...I really don't know if I can go through a 3rd surgery so if anyone has any ideas, I would appreciate them.


LWESTMORELAND
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Avatar_n_tn
I had a spinal fusion on 3 levels in August 08.  I have caught constant infections.  I visted my Surgeon last week who had told me that my bone has only fused 80% and that if I catch one more infection he will need to re-operate.

I am very dissapointed with this news and asked the reason for the constant infections and he mentioned it was due to an infected screw which may have been placed in at the time of surgery.

Has anyone been through this and can anyone offer any advice as to what I do?

Moh
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Avatar_m_tn
Hi there-

19 years ago I had an anterior/posterior spinal fusion.  I am fused from my hips to above my shoulder blades.  I have only 6 vertebra that are not fused.  I have constant pain every day, especially when the weather is humid...if the humidity is over 65% I am in agony.  I have spinal stenosis from my arthritis and the bone growth is growing so rapidly that almost every nerve in my back is being pushed on and I have mostly pain everywhere but I have nasty flare ups where I can feel shooting pain inside my body and it is just unbearable!  I started seeing a pain management doctor about a year ago and have been getting Marcaine/ Kenalog injections every three weeks, sometimes I only get relief for five days and then it's back to square one.  I have been diagnosed with Chronic Myofasial Pain.  I keep a pain journal and have only had 3 pain free days this year.  I am 39 years old and sometimes getting out of bed to make coffee is an ordeal.  I live alone and can only bring up one bag of groceries up my steps at a time.  It's not a good way to live and very frustrating.  Above my fusion I have a lot of wear and tear on my vertebra and a few bulging disks.  I feel most days that someone is hitting me with a baseball bat and the sensation never goes away, unless I am asleep. I was reluctant to take any pain killers but now I take Soma when I am home and I take Vicodin all day long....sometime 8 or 9 per day.  I work full time and I sit at the computer all day long.  By lunchtime I cannot feel anything below my hips...just numbness.  I am seeing a neurologist on Wednesday to see if he can do some more advanced trigger point injections that will help me better than what I am receiving now, but I am doubtful.  I am on FMLA at work and take almost one day a week off which stinks but when I can't even dress myself or get down my steps for the pain, it's the only thing I can do.  Just rest.  But that is depressing in itself, just laying around alone does not help and people really do not understand.  Do I have to live like this forever? The Vicodin only takes the edge off that's it.  I thought it would do more but my pain is deep and persistent.  When I take the Vicodin it feels like I am taking Tylenol but I am afraid to take anything stronger as I do not want to get addicted and be a zombie.  That is not a satisfying life for me as I am as active as I can be.  I get Chiropractic care for the disks that can move and do a massage every week but it's only a temporary fix.  I do light exercises at the gym, I stretch everyday and now that it's summer I joined the pool near me and try to swim everyday, if I can drag my but there!  If there's anyone out there that has any suggestions, I would love to hear them.  I am at the point where I am reduced to tears a few times a week as when I had the surgery I thought I would be all better but since I had bone harvested from my hips, shoulder blades and ribs everything hurts!   My surgeon never told me about the side effects that would plague me 2 decades later but I had to have the surgery as my curvature was 80% and my ribs were starting to constrict my lungs.  I had no choice in the matter.   My e-mail is ***@**** and would love to hear from anyone that is suffering as I am.  I just keep praying for myself and everyone out there like me that is suffering from Chronic Pain. God bless and hopefully I will hear from anyone that is in pain like me.
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Avatar_m_tn
WOw, and I thought I had it bad kiddo!! Sorry I call everyone kiddo. Anyway I am three almost four years post op on a two level fusion at the biggest offenders out there.....L4 and L5 and of course the old reliable S1. I can tell you that I first off have a huge tolerance to pain meds, yes yes all say this. I am being honest, I was born out of the womb this way and it is not a result of being on the meds I can tell you with assurance. With that said, I am currently on MS contin 60ER twice a day, 30MS contin ER once a day along with my first pill of the 60..so that is 90 first thing in morn and 60 in the eve. Also in addition to this I am on Oxycodone 15mg, no acetametaphin every 8hrs or three times a day. Some folks really balk at this amount but I can tell you, I do what I want when I want to. I do not have the ZOMBIE affect but again I am a different animal when it comes to pain meds. THe stuff I take would knock a lot of folks down for the count. I am thoroughly convinced that this is the best way to go for me and would recommend at least trying this route for others when in the amount of pain I see on this post. I mean why not?! Could be the difference of being in the land of the living or what you have now, which sounds dreadful I have to say. I also work and work long hours at a computer as well. It does get to me but I do live as I like for the most part. Hell I even ride my motorcycle in the summer months for an hour at a time, about my limit lol. Good luck to all and boy do I know what you are goign through and no will understand unless they have tread a mile in our shoes, found that out the hard way over the years!!

Kevin Coleman
Warren Mi
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Avatar_n_tn
I just had lumbar fusion a week ago, ive been kinda on my own having to do things myself and walk and bend alot. I hurt so bad and my medications are out and the surgeon is 2 hours away with no transportation. Ive never experienced pain this bad my hips hurt my legs constantly twitch and tighten up. Ive been to the local ER and they gave me a little relief. I just dont know what to do. I also have 5 herniated disks in cervical and thoracic, narrowing and impingement, but that pain doesnt even come close to this. WHAT TO DO IN AGONY!
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Avatar_f_tn
I had my surgery 2 yrs ago and at that point I had no back  pain.  I had (R) knee pain which was constant before and after a total knee replacement, so the ortho MDs which did my knee said that they couldn't do any more for my knee so they referred me to a back MD and he did an MRI said I needed back surgery for spinal fusion.  Now I have bilateral knee pain and back pain.  I am currently trying acupuncture and my 4th treatment is this Wed. So far I still in a lot of pain and I am very tired. I only take Elavil 30mg at bedtime so I am in pain constantly.   This has aged me so much.. I feel really bad constantly.  My spouse is wonderful and helpful but is very frustrated with the whole situation. I keep praying that I will get some relief but so far nothing.  Actually my life is now staying at home because if I walk too much my knees really hurt and then the spasms start in my back and then my spine pain kicks in, not fun....
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Avatar_f_tn
I had my Spinal Fusion L-4&5 on 12/14/2010.  I was in so much pain beforehand from sciatica, I accepted the MD's recommendation without question.  Now about 4 months post-surgery, my back pain (which I didn't have before!) is constant and debilitating.  The worst part is that the surgeon will not see me, ( sure as heck wish I knew why!) and as a result I lost my short-term disability benefits!  Luckily, my PCP prescribed 15mg MS Contin bid, and I take Norco 5-325 for break-thru pain, but it's too often.  Just the other day, as I tried yet once again to see the surgeon, a nurse there told me it could take 1-3 years for the pain to go away!!!  I was floored, as this was never told to me before the surgery!  And get this - she asked me if taking Ibuprofen for the pain helped!  For anyone who asks such stupid questions, they should have their own muscle cut away!  So if you are smarter than me, be warned, and good luck to you!
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Avatar_m_tn
I have had a total of 8 back surgeries and I can personally tell you there is no relief just good days and worse days.  My heart goes out to all of you!  If I could turn the clock back I would never had the first surgery that lead to seven more in five years and still no relief.  
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Avatar_f_tn
Hi, I have had a 3 level fusion posteria in 2009 and unfortunately the bone graft did not take leaving my spine very unstable, I was operated on again a month later, where my surgeon put 7 more screws in to stabilize my spine, my nerve was severed leaving me with no feeling in my left leg at all, I was hospitalized for 4 weeks then sent home to recover, the pain is cronic (chronic) & very debilitating I have been diagnosed with depression, but must say the anti- depressants have helped with my moods, my pain Meds make me feel like crap, but again year later the bone still has not grafted & vertabrea above is now in need of fusion, so back I go this time my surgeon does anteria fusion adding another two scars to my collection, I am currently seeing a pain specialist & taking Jurnista 24mg, panadine forte 500mg 4 times a day, diazapam 10mg, tamazapam 20mg, Lyrica150mg, ranitidine , & of course lots of laxatives as you may all imagine, I have just had facet joint injections both sides, and I would not recommend them the pain is much worse now.
I have been told I will never work again, which is devastating to me, my social life is none existent, life will never ever be the same...
I developed unexplained pain in my feet 6 months ago and could barley walk, I was sent for an MRI and have now been told I have stress fractures in both feet, and am having them pinned & plated in 2 weeks time, as they have not healed. My orthopedic surgeon tells me that because of the way I walk as a result of my back surgery & pain has caused the fractures, I wonder how much more I have to go through...
I wish all of you the best in your recovery's & future treatments & hope you get some releif from the awful pain .
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Avatar_m_tn
Why are you posting your own issue / thread as a response to someone's question / request for help? That helps no one. It clutters the organization of the site and makes it useless. Seriously, how helpful is it to read a question where someone is looking for an answer or help and see 300 tales of pain with no help or response?

Give an answer, word of support, or START YOUR OWN THREAD!
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Avatar_m_tn
I want to hear good outcomes, not just the bad
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Avatar_m_tn
I also suffer with extreme never-ending pain. I had a spinal fusion (with rods, plates, pins and staples) in the eighties. I have also had two car accidents and other incidents. I was on many narcotics until I had a coma/seizure/ or unknown incident (according to the doctors).

I lost my memory for a long time and reverted back to a young child. This incident scared me so much that I stopped taking medicine, changed my diet, and started walking.At first, I could only walk a couple of yards, but, I was walking 5 miles after 6 months. I used a radio to keep my mind off of the pain.

It is now 20 years later, I now have vertigo, PSTD and acute stress and have had 8 infections----but, I am still walking and now I am drawing cute little drawings. Yes---I am still in extreme pain----but, the walking seems to level/balance the pain to a bearable level. Good luck to all of you. I know how you feel.  
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Avatar_m_tn
I also suffer with extreme never-ending pain. I had a spinal fusion (with rods, plates, pins and staples) in the eighties. I have also had two car accidents and other incidents. I was on many narcotics until I had a coma/seizure/ or unknown incident (according to the doctors).

I lost my memory for a long time and reverted back to a young child. This incident scared me so much that I stopped taking medicine, changed my diet, and started walking.At first, I could only walk a couple of yards, but, I was walking 5 miles after 6 months. I used a radio to keep my mind off of the pain.

It is now 20 years later, I now have vertigo, PSTD and acute stress and have had 8 infections----but, I am still walking and now I am drawing cute little drawings. Yes---I am still in extreme pain----but, the walking seems to level/balance the pain to a bearable level. Good luck to all of you. I know how you feel.  
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Avatar_f_tn
I'm 7 post op L5-S1 and I'm having more lower back pain plus now I have hip pain. Does anyone have answer why there's a lot of people with hip pain after surgery? My dr says the pain is in my head and I'm addicted to meds. I have tried to show him I'm not by stopping all meds for 3 weeks which were hell for me. Now I just look foward to bed time cause I can take ambien which helps me sleep.
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Avatar_n_tn
had L4/L5 fusion and 5+yrs after am in so much pain it's unreal. no insurance no Medicaid because still fighting for my disability. now on methadone from being on pain meds and losing insurance. I can't take much more.....
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Avatar_n_tn
I am a 58 yo male having L4-S1 posterior inter body fusion with pedicel screws and bone graft.  I have facet joint cysts compressing my L5 nerve root causing burning down my leg and weakness in my foot.  I know a little bit too much about this problem and as an Orthopedic Surgeon, I have done a few.

That said, I am pretty scared as I have seen quite a few failed backs in my practice.  I am currently taking naprosyn, neurontin 600mg T.I.D.  I will  post again after the surgery to let you know how I am doing, what helps, what doesn't .
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