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Worsening Symptoms after Spinal Fusion
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smorris0505 posted:
Hi,
I am a 30 year mom of 2 young boys (8&5), and I had spinal fusion surgery in April on my L5, after having a failed discectomy in December. I have been in constant pain for over 2 years now, and it has increased tremendously since the fusion. I knew the fusion would solve one issue, but create several more, but I had no idea it would be to this degree. Most days I have trouble walking, I can no longer drive for more than 10 min. stretches, and I am now experiencing pain and numbness in both of my arms and hands, which is further incapacitating me. Has anyone else experienced similar issues? I have been advised to apply for disability, and I am going to seek the advice of an attorney next week, but I am going to school at the present (online), and I am still hoping to one day feel well enough to return to my career in Interior Design, but I'm afraid that may never happen. I'm also concerned bc my disks are degenerating at such a rapid rate, I am looking at more surgeries in the very near future, which I personally think will be a waste of time. I have scar tissue wrapping my sciatic nerve, and a host of other issues, and my pain management Dr. was honest with me, and told me I was most likely going to never improve. I'm hoping in the next few years more advancements will be made, bc I can't imagine living like this for the rest of my life. I feel like my kids are being cheated out of so many experiences, bc we used to lead such an active life, but that has all come to a halt. I am also unable to do household chores, putting a further strain on my husband, who I am so lucky to have, bc he complains about nothing and supports me unconditionally. I have been told I have the back of a 75 year old, so where does that put me in 20 years, lol?? I may seek a second opinion on my condition, bc my neurologist has just pushed me to pain management bc he repaired the herniation, but has let pain management deal with the after effects. If anyone has a similar story or any advice I would really appreciate some feedback.
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An_189747 responded:
Hi, I am sorry you're having to deal with all these issues and having to be a Mom on top of it! I understand tho, and luckily my kids are all grown now (19 & 20). I have a ruptured disc in my neck thats pinching a nerve causing even more pain and a lot of numbness and weakness... I also have 2 bulging discs in my lower back, 1 in the tailbone and sending terrible pain shooting down into my leg making walking normal extremely difficult! I have to use a cane to get around, and I have a wheelchair too for the longer distances. This doesnt even include the arthritis and scoliosis either! But 95% of my troubles were caused from a car accident two years ago.
They cannot do surgery on me at all, I have a degenerative bone disease in my neck that prevents it because the risk of the bones breaking up is high.
At first, I thought I was going to go crazy! I was in law enforcement and had a career I enjoyed, I was very physically active and always doing something and in a split second my whole life changed. I thought I'd get better, despite the fact I flipped my car 3 times and was pinned in it. I cried - even at my desk from the pain. And with the stroke of a pen, I was out of work too! I couldnt even sit at a desk for 8 hrs. I did PT with OTC meds, nothing helped. I stayed in agony. Before it was all said and done, I was on Fentanyl and Methadone for pain and its still a struggle even if I am not feeling as much pain.
I wont get better. That wasnt easy to accept. I took it as a challenge and tried to prove the Dr's wrong and beat myself to death for 19 months before I finally admitted defeat. I kept pushing and pushing myself because I thought if I got stronger, I'd get better faster. I didnt get stronger and I didnt get better. I just got slower and slower.
Now the plan is I can either let them implant a spinal cord stimulator that will give electrical charges from the inside or a morphine pump, neither of which I really want. But I am at a point of desperation and just wanting some relief and some normalcy (no pain). I am just 41 years old...
I've had to change my entire lifestyle because of this. And I am "old school"... me and "change" do not mix very well. My kids and I were close, and always doing things and going on hiking trips... not anymore. My son stays worried and stressed out and has gotten overprotective which makes me feel bad because I am supposed to take care of him and his sister, not the other way around! They've been more understanding about all this than I have been, thats for sure.
I cant do housework myself... I try and will keep going even when the pain levels warn me its time to take a break. Which is about 3 minutes into it. Listening to you reminds me of me... and makes me think its more our pride getting in our way than anything. Its what we think we need to be doing as moms and housewives, our personal beliefs, than it is us accepting we really have limitations now that we didnt have before. Sometimes change isnt always for the better, but whatever it is that brings it, makes it this way for a reason. (personally I think mine were brought on because I needed to slow down and wouldnt. If I hadnt been forced to, I might not be here now because of the kind of work I was doing). I had to change everything. If I want to cook/clean I have to do what I can get done from a seated position as much as possible! And I gotta get help getting the rest done.
If we're always on the go and doing the wifely duties and motherly duties, we sometimes may even forget to take time to really listen to our kids when they wanna talk, cuz we're busy with this or that.
Basically I guess what I am saying to you is, its all about acceptance now, doing what we can to live with the pain and changing the way we think - old attitudes to new ones. Now all we have is time, we just have to do our best to make the best of it.
 
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smorris0505 replied to An_189747's response:
Thank you so much for responding, it is so nice to know someone else is out there going through similar difficulties. I do agree it is my pride that is getting in my way, and I never slow down; on top of my back and nerve issues, I was diagnosed in the last year with adult ADHD, which totally through me for a loop as well. I had suspected I may have had it since college, which is when my life became sort of a disaster of sorts, lol. I was an honor student in high school, in all advanced courses, and then when I got to college everything changed, mostly bc of the lack of structure. This almost makes things worse now bc in order to not have my life be utterly chaotic I need to follow a detailed schedule, which is virtually impossible, as I'm sure you know, bc I never know how I will feel on a day to day basis. I just had my 12th epidural block done on Thursday, this time above my fusion, but my Dr. wasn't too hopeful, bc of the amount of scar tissue that has wrapped my sciatic nerve. I think I have now herniated my L4, but it will be a fight to get another MRI, as I had my last one in June. Don't you just love insurance companies, . My sister is a Physical Therapist and she said she is glad that I at least have an insanely high pain tolerance, bc most of her patients in the same condition as me are using wheelchairs a majority of the time. I have the same thought process as you, that if I keep pressing on as though things are normal, I will eventually get stronger, even though all medical evidence suggests otherwise, and I know I am doing my body a disservice by doing this. I can't seem to find a happy medium; it's all or nothing with me. I'm either sitting in my zero gravity chair the entire day while the boys are at school, or I am struggling to go, go, go all day even though the pain increases ten fold, and my leg is numb, yet still agonizingly painful. My husband gave me the greatest compliment the other night, he said he was so proud of the way I have handled the situation, the way I keep fighting for my happiness, and fighting to give as much normalcy to the boys as possible, even though he knows how extremely difficult it is for me. I have so many days of utter frustration, and defeat, but I have not once felt sorry for myself, I only feel guilt and sadness for the life I could once give my husband, and my boys. My 8 year old is such an old soul, and he understands way too much at his young age, and that makes me so sad. He is always quick to take care of me, or my youngest son bc he knows mommy's back hurts, and he doesn't want to put any additional stress on me, and that kills me! I feel like you; I'm the mom, I am the one that is supposed to take care of them and shoulder the worry and responsibility. I need to let go of my "old life", and try to get a grip on this new normal, but I'm finding that very difficult. I also have to learn to ask for help when I need it. My husband basically does everything, and I would love to give him a break, so sometimes I will just do the housework, even though I know I will pay for it the next 2 days, and that makes him so angry. He really is the most selfless human being I have ever met, and I am so grateful to have him by my side, but it makes my guilt so much worse bc I do love him so much, and care about his well being so much as well. A double edged sword I suppose, lol! I also just spoke with my doctor about the spinal cord stimulator, and if this injection doesn't help (which it hasn't yet!), we are seriously considering going forward with that plan. I don't really like that option either, especially bc MRI's are out of the question after that, but honestly even if my bulging disk has herniated, I will never have another spinal surgery again. I like you, just want to be as pain free as possible, 2 years with constant pain is very tiresome! Let me know if you have any info on the stimulator, and I hope to hear back from you soon!
 
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j_cobb replied to smorris0505's response:
Hi ladies - I have a very similar story. It's scary reading posts like yours because it sounds like I wrote it!!! I am 36 with 7 and 5 year old boys. I had a fusion from L4-S1 two years ago and then a follow-up surgery to remove a bone spur and scar tissue one year ago. My pain level never really went down and I have now been on disability for one year. I've been through all conventional treatments (PT, injections, every narcotic under the sun, etc.). I just had a spinal cord stimulator trial this week and that didn't really help. I just felt the electricity from the stim but I also still had the pain. The short of it is that my PM doc doesn't really know where to go next... neither do I. I'm not ready to throw it in at 36. I just don't know where to turn???

It's amazing how children really can comprehend what we are going through. My 7-year old sounds like your 8-year old. He helps me all the time because he knows my back hurts. My 5-year old hugs my leg and back all the time to help it feel better.

I've had severe pain for over two years. My life, work-family-social, crumbled around me as I became a slave to my pain. It took me about a year to really get my mind around my situation. Now I try to do the best I can with what I have. It sounds simple but it is SO important to truly understand.

I'm pretty disappointed right now because the stim wasn't helpful... not sure what's next.
 
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imachildagain replied to j_cobb's response:
Yes, it sounds like I wrote it too. I was told I needed L5-S1 fusion or could be paralyzed, so of course I had it done, and it was where I could barely walk or stand. After the most horrible pain and healing time (33 total surgeries) it lasted a year and then pain, shooting nerve pain, the deepest ache in calves, thighs, buttocks, I couldn't take it. The strongest meds only took the edge off of it. No young children, but unable to get on the floor and play with grandchildren which broke my heart.

I won't say it answers everyone's question, but meanwhile had 2 separate fusions in my neck, and have 2 more with problems, requiring constant nerve cutting to try to keep the pain and headaches down.

But for the lower pain, the Neurosurgeon referred me to a Spine Specialist to see if a Spinal Cord Stimulator (SCS). I thought this was something new, but Medtronics (makes pacemakers) said they'd had these for 30 years. I had a 4 day trial which was really easy, outpatient, and had a control to increase./decrease the amount of stimulation. It interrupts the pain signal that goes to the brain. When I have it turned up high, it just tingles, but NO pain. The trial was so successful, it not only controlled the pain from the scar tissue that had wrapped around the screws in the lumbar area causing Sciatica, but the Neuropathy pain in my toes from Diabetes. It also has significantly stopped the pain from 3 knees surgeries including a last replacement and ankle surgery.

If the trial doesn't work, they don't have to implant it. But if it does work, and I had at least a 85% improvement in 4 days. I went from barely being able to get out of a chair to climbing a steep hill, jogging a bit, shopping, etc. I was alive again. I had the permanent implant put in 4 months ago (insurance paid 100%). Some changes of position can make the tingling intense, but I have a control I keep in my purse and have 4 separate problems. Medtronics will meet me anytime at the docs office and change or add programs. I need one or two additional programs, hardest to get to the buttocks and higher in the back for me. I tried turning off at night, but could only sleep 2 hours again, so turn it down about 75% and sleep 8 hours for the first time in many years. I can shop and walk for 3-4 hours, just helped plant 8 tall trees and 23 shrubs. I haven't been able to do more than extremely light house in years.

Now to address the neck problems and non-stop headaches....they do an implant also for cervical which I need to research.

So, do all the research about your options. What works for one person, doesn't for others. It's not an exact science by any means, but having relief for 1/2 my body has let me get back on my exercise bike and try to loosen up a frozen knee replacement. It's given me hope, alleviated a lot of depression, and as many women seem to relate to me, the guilt we feel that we can't do what we think we should be doing.

GOOD LUCK !!
 
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smorris0505 replied to j_cobb's response:
I'm so sorry to hear that the stim didn't work out for you, it is so draining to be in constant pain. I don't even remember what it's like to not be in pain, I haven't had one day without nerve and back pain for over 2 years now. I am finally applying for disability, but I'm so scared about how involved the process is. Did it take you a long time to get approved?
 
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imachildagain replied to smorris0505's response:
After fusions, nerve cuttings, epidurals, etc. that didn't work, the Sciatica pain was disabling. They set up a test in 3 weeks which worked for me perfectly, then about 3 weeks to get insurance approval and schedule the permanent implant. At least I'm lucky it worked for me and for the past 4 months feel 1/2 way human again.
 
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direstraights responded:
had c-fusion and i have not gotten any better that was three years ago i am beside myself cause noone can seem to help me figure out what is wrong i amd just as bad if not worse i am so frustrated . on the other hand my sister had it done and she had to wear a halo for a year or two and has had no problems since i think you need to get different opionions and go with the doctor that makes u feel secure, and if they want to genuinly help u they will make that clear and if they are catious maybe listen but from expiriense surgery aint all that its cracked up to be, hope u find some good answers and help
 
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imachildagain replied to direstraights's response:
I'm definitely insecure at this point about the nerve cuttings. After the 6th one and 3x more pain for 15 days, it reverted to pre-surgical pain, but now has increased to more and more headaches after the back becomes painful, creating muscle pain in the neck, and onto the head. I'm maxing out medications. I refuse to have any more nerve cuttings. I have made an appointment with the Neurosurgeon again, but can't see where any more fusions will help me in the long run, so am going to try to see about a 2nd SCS in the neck for the cervical area.
 
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imachildagain replied to imachildagain's response:
Many months later with non-stop upper body pain, shoulder blades, arms, neck. I did my own research, and I am at the end of anything that can be done, fusions, steroid injections, multiple nerve cuttings, only made it worse. So finally in 9 days, I'm having a 2nd STIM trial but for the upper body. If it even 1/2 as successful and the lumbar one was, I'll be a happy camper. Right now in 24 hour pain, neck not moving, radiating to intense headaches, unable to concentrate, work, sit at the desk. Pretty much married to heat and ice packs, massage, topical RX pain killers, every day 4 Ativan, 6-8 Norco, 2 Tramadol, 1 Flexeril, 1 Valium. And that just keeps it so I can do a few small things around the house, very little. I feel 20 years older, hate the meds, and the combination of meds, pain and effects, I feel like a zombie. So I am sure hoping this is an answer. I have a lot of life out there and am missing it.
 
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chrispain responded:
Thank you for your post it has been very helpful. I had a fusion 6 months ago t6-9 and now have a rod in my back. The pain is worst now than ever before. I still manage to work barely, but it sounds like its not getting any better. Would you recomend another surgery or just deal with it?
 
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imachildagain replied to chrispain's response:
Everyone is different, so what works for one, may not for another. After 3 surgeries, now fused C4-C6 and L4-S1, I don't want more surgeries as it only took 6 months for C3-C4 and C6-C7 to become problematic after the last fusion. I have a SCS for my lower extremities and low back, done last July, has improved my life wonderfully. But the pain in the upper back, neck, and thoracic area, I just had the trial surgery for another SCS. It was very successful, so I'll be having the permanent implant soon. They started in the thoracic area, past the cervical fused areas, up to C2. For me, I don't want more surgeries, as the first cervical fusion was okay 1 1/2 years, then putting pressure on discs above and below. Then the 2nd cervical fusion, only 6 months until the same thing happened. My neurosurgeon agreed with me that fusing more would be a continuous thing as my back deteriorates so quickly.

I also do not like taking the narcotics, which I'm maxed out on now which limits my life, no driving, foggy head, etc. So, I feel that the SCS is the last resort, but it has been successful for me, the rechargeable ones I opted for will last 9 years. It isn't 100%, but can target the area of pain most of the time and increase the intensity of the implant. I'm learning to easily work with it, and when off the drugs I feel free. As long as these implants keep me off drugs, keep me from more and more fusions, I'm happy.

My Neurosurgeon actually was the one that recommended the SCS for my lower back as Sciatica was excruciating down both legs and back.

Before the implant though, I went through all the epidural shots, the nerve cuttings over and over. Once nothing worked, this is where I ended up and am much happier and very excited that hopefully in a month I'll have the 2nd implant.
 
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ngrayned responded:
Wow,your pain problems sounds like me.I am 55 yrs old,wife and 2 kids,hurt my back when I was 28 yrs old.I 've tried it all.I'm in horrible pain every day.I have degen. disc disease,had 3 back surg,1 neck fusion,and now I have a morphine pump in me,still in pain everyday!!!!! I ask GOD to please help me,I want to LIVE again.Not lay on couch,I'd be happy to talk any time,God Bless, N Grayned
 
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wanting2bhealed replied to An_189747's response:
Hi! I know it's been 2 years since you posted the response to the 30 year old mother in pain but I just today have come to this website asking a question about a dual surgery to see if anyone had advice. I was wondering if you ended up having the spine stimulator placed in your back? I am pretty much a mirror image of what you wrote regarding the family, etc and pain. The only difference is I am going on 50, have 4 children that although they feel bad, it's too difficult for them to be around me, I've recently separated after 23 years of marriage and I've had 4 low back fusions. From the onset, the surgeon did not do the surgery I had prepared for. The PLIF w/cadavers. He did not give me a detailed explanation as to why he chose not to do the PLIF, only he felt a disk lamactomy he felt was sufficient. I've had to endure 3 more surgeries. the first was 2005 and 8 months, 2006 later I was in having hardware removed that fell apart in my back. He said it was 100 percent fused. Within 8 months another surgeon said it wasn't fused so in for another in 2007. Within a year from that, worse pain and another level herniated so I had L3,4,5,S1 all fused. Last fall I found out the L2,3 is completely herniated and the disk is completely out of the vert. as well as C5,6,7,T 1,2 which they say has nerve damage and needs to have surgery as well as a spine stimulator to be placed in the lower back. All the while, the pain increasing to levels I can't describe any better than say crippling. On top of that, in for emergency twisted bowel color/upper bowel trauma surgery where a foot of my colon and all upper bowel removed. Why? from SCAR TISSUE THAT FORMED ON EACH SIDE OF MY COLON FROM PREVIOUS SURGERIES. A complete nightmare that almost took my life on January 17, 2012. Since then, a plethora of procedures to reduce pain. All no luck. Just last Thursday told I need to have Cervical / Thorasic surgery of the above I wrote before C and T levels as well as having the trial week for the spine stimulator. IF you had this or have any other new updates, would you be kind enough to share them with me? Although it is an emotionally exhausting, painful and emotionally life/personality changing experience, it also has taught me that life is meant to be spent living moment by moment and we may never have a tomorrow. I feel bad for anyone who suffers constant pain. It changes who you are, not on purpose. It just happens along the way. Not good or bad., Just changes us. We're still lovable and worth peoples time. I've also had to overcome the "getting and asking for help" thing. It was I WHO ALWAYS HELPED PEOPLE Here I am now in need of help on a daily basis. It's sad but true...
 
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mare4christ replied to imachildagain's response:
I was reading your post and wonder how your health is today. I am having similar problems with my cervical and lumbar spine. My cervical spine is fused from c4 to c7. My lumbar spine causes me such pain that it hurts to stand or sit for any period of time. Some tasks are worse than others. I hope that you will respond with how you are doing.


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