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Whats the deal here with these darn nerves?MRI Update

Shell74Shell74 Posts: 300
edited 06/11/2012 - 8:27 AM in Back Surgery and Neck Surgery
I had my lumbar fusion 8/21/08 so I am 5 months post op. Back pain was 75% gone and leg pain was very little right after surgery. I had "normal" progression of healing to about 3 months. I was walking about 2 miles per day and no more meds. I was feeling good at that point, thats when the dreaded nerve pain started to get worse and worse.

Now, I am back to using a cane and having lots or tingles, numbness and weakness in my groin/butt/legs and feet. Much worse than before surgery. I can no longer sit in a chair for more than a few minutes or walk more than about 50 yards without tears. Things "down there" arent working most of the time either! Of course this is all very discouraging. All the doctor can say is to give it time, this is how nerves heal. It is just so frustrating that it would start 3 months after surgery and just get worse and worse, shouldnt it be slowly getting better?

When nerve pain increases, how long does it keep getting worse and when does it start to get better? I know this is totally different for everyone and there is no real answer, but maybe someone has experienced something similar. Any thoughts?



  • what to say except that perhaps you had some unperceived numbness and now those nerves are starting to wake up? I'm almost 12 weeks out of surgery. My right foot has been numb since surgery, but in that last week, it has begun to be numb and painful at the same time. I'm not really sure how to explain that. Mostly there's a lack of feeling, but occasionally, it will just begin to ache and I can bear to have anything touching it.

    I hope things improve for you. Nerve pain just plain sucks. Have you tried Lyrica? It really helped me in the first few weeks when the nerve pain was excruciating.

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • It does just suck. Well, you all know what it feels like, I dont need to go into that. My DH just doesnt understand, that sometimes there is just no feeling at all, without giving TMI,lol. It is so frustrating. I just thought it stange to be fine for 3 months then have things start up. I did ask him about Lyrica when it first started but he said I didnt need it. This past week he said give it a year till I make any conclusions about the nerve pain.
  • Hi Shell, sorry you are feeling so lousy. Have you had a recent MRI to check if something has moved or changed? I would think one is in order. It just doesn't make sense to be better for 3 months then get worse. Something has changed and your doctor should be more concerned with looking for a cause in my opinion. Yep it can take a year to recover, but why the new symptoms at three months? I think you should keep trying to get your doc to do something. Can you go somewhere else if he won't? I hope you get some answers soon and I hope you are keeping warm through this winter. >:D< Cali-Sue
  • Sometimes when a new pain develops months after surgery, it is a result of epidural fibrosis (scarring). I would ask for a new MRI to see what's going on in there.

    Another longshot would be that you developed a seroma after surgery. This is a little area that fills with undrained fluid. It is fairly common after surgery, but they usually get reabsorbed after a period of time. Something is pressing on a nerve, causing some compression or you wouldn't have this pain.
  • Hi

    Did your doctor say how long it would take for the seroma to finishing draining back into a persons system?? I guess it's different with each person. Just wondering because i have one and i told my new PM that it's been ten months and she said in some cases it takes longer.

    Evelyn :H
    Had PLIF in 2008 and a Laminectomy. One level fusion, L4-L5.
  • Cali-Sue said:
    It just doesn't make sense to be better for 3 months then get worse. Something has changed and your doctor should be more concerned with looking for a cause in my opinion. Yep it can take a year to recover, but why the new symptoms at three months? I think you should keep trying to get your doc to do something. Can you go somewhere else if he won't? Cali-Sue
    My thoughts exactly! I think if I speak with the PA she will understand my concerns, I just havent seen her in months.
  • Thanks everyone. I feel a bit better to know that I am not totally crazy to want more details at this point.
  • I had the EXACT same experience - doing better after surgery, walking 2 miles, etc. Then the nerve pain came back, got worse and worse. A little over a year ago, my MRI and CT scans came back looking fabulous so the NS ordered an EMG and nerve conduction studies. Turns out, I have permanent S1 nerve damage and have just recently had my permanent SCS (spinal cord stimulator) implant done. Changed my life!!

    Unfortunately, permanent nerve damage is the pits, but there is hope. I hope you do not have that, but can you see if you can have an EMG to see what is going on? I got so tired of docs telling to "wait for the nerves to heal". Not only were they not healing, they were getting WORSE!! 24/7 burning pain - UGH.

    Many gentle ( ( HUGS) )

  • I too felt pretty good for about 3mos post op ALIF L5/S1 and it's been downhill ever since. Exactly as you are describing. I'm now having pain, numbness, pins and needles where I didn't have before. Keep pushing for an answer even if that means changin docs until you find someone who will take care of you the way you deserve.
  • Of course I will give it time, but its good (well not really good,lol)to know that others have had similiar experience and had someone take them seriously. I have never experienced this bad of nerve pain pre surgery or the first 3 months. It is constant and when it gets real bad all things go screwey.

    Wondering if I shouldnt start back at PM, he was very good with taking everything I said to heart. When I had surgery he transferred care to the OS, as long as I am only getting prescriptions from him he will see me again, he said to come back when I was released from OS if needed.

    Thanks again!
  • Gosh, I read this kind of stuff over and over from folks who have had fusions. Im terrified of fusion. I know insurance doesnt cover ADR, but for those who havent made the choice yet, keep in mind that there are always free ADR trials out there. I know that many people have succesful fusions, but there are way too many people who dont. It just seems to me that artificial discs rarely have these types of complications. Ive sat here for almost a year now and Ive read 100's and 100's of surgical outcomes and ADR wins hands down.

    Sorry if off topic here. I wish everyone luck with their healing.
  • Hi Steve,

    There are tons of good outcomes too, just most of those people are out partying instead of complaining like me,lol Everyone should know and understand that things can get worse when they agree to fusion, sometimes much worse. I just need to get thru this end of things.

    I am so happy that I can now lay flat and stand up straight in the morning without crying in pain. I havent slept thru the night for the past 8 years, 2 months after surgery I was sleeping like a baby. This is great! If nerve pain is what I am left with after I "give it time" I will deal with it and be thankful I can walk. For me its really hard to keep a positive attitude about things but I need to try harder not to get into the pitty-party mode.

    Good Luck with whatever you decide Steve!
  • I was supposed to have ADR, however, my insurance wouldn't approve the procedure so after 3 months of appealing the insurance company and doing research on fusions, I took a chance and had the fusion. I hope my nerve pain is just from them healing. I am trying to stay positive but still think what if I did have ADR, would I be feeling so much better. I will never know so I have to try to get that out of my mind.

    Deciding on whether or not to have a fusion is the most difficult choice I've ever had to make in my life. I sympathize with those who have to make this same decision.
  • I just noticed on your below the line stuff that you mention "mild arachnoiditis." I think there is a possibility that might be the reason for your pain developing 3 months after making some progress. I would certainly ask your doctor about it as a possible cause.

    It takes the scarring in the vicinity of 3 months to develop after surgery. Generally the patient is making good progress in recovery, and then old pain redevelops or new pain develops. Obviously, there are many other things that can cause this to happen, too, but you might want to ask your doctor since you've already been told you have arachnoiditis.
  • Wednesday I had to see the PT instead of the PTA, he was concerned since I have saddle parethesia in addition to the entire leg thing. Since it goes away within about an hour the doctor wasnt too concerned, and gave me the give it time speech. The PT disagreed. Thursday I took my brother to the neurologist and he asked me how I was doing, I told him and he did some quick neuro testing, he proceded to tell me that this should not be happening like this, he cant believe I am not on something at this point and being looked at more since it is progressively getting worse. Is this the difference between working with an OS and NS? ANyway, I know have an appointment on Wednesday, hopefully we will proced so I can get some answers.
  • Thank you for the info! Anything I can mention to the doctor would be helpful. Although I understand things take TIME to heal, I never expected a backwards slide. Last night my entire leg spent 2 hours burning like just after you dry shave and scrape yourself up, OUCH.

    Take Care,
  • I'm delighted someone is going to take a look at your problem. Sometimes another doc won't step in like that. I hope that he will be able to offer you a solution, or at least some ideas.

    Personally I would not conclude that this is an example of the difference between different spinal specialties. I think it is more a personality thing. My ortho. has been great with nerve issues, and the two neuros I consulted with just wanted to do a multi-level fusion just to be on the "safe side."

    I will be eagerly waiting to hear what the Neurologist thinks about your new developments.
  • The neurologist I spoke to was very unofficial, I am not his patient, he was just offering a bit of advice. I went back to the OS today and the first thing he asked was how long I have had tingling, he said he didnt remember me telling him before. WTF, every appointment I fill out a silly picture with all of my pain marked with x's, circles and dashes then proceed to tell him all about it and I guess he just doesnt take notice. Or he is just testing me to make sure I dont say something different, I dont know.

    Xrays look good, in fact I have a bit of bone growth, YEAH! So here is what he had to say could be going on. Normal healing, you just perceive the pain differently. The next level went completely, I fell 3 times an had to give DH the heimlich at 6 weeks so who knows, it was allready herniated thru 2 layers for the past few years, but no loss of disk height so he couldnt fuse it according to the insurance. Bone piece could have migrated to where it doesnt belong. Surgery could have caused the arachnoiditis to progress rapidly. So anyway, I have an MRI with contrast scheduled for Friday, they couldnt do it at the hospital putpatient today, something about a new protocol with bloodwork when you have certain pre exsisting conditions. I will also be taking a steriod pack. He seems to be pretty against Lyrica or anything like that for now.

    Guess I will know next week what the deal is. I am notorius for picking up my MRI disk once the report is read, so I should know on Saturday what to expect next week.

    Thank you everyone for your support!
  • A few days after my PLIF L5-s1 w/pedicle screws and cage fusion on 123008. I thought I had a spinter in my big toe...now the top and side of my foot feels like it's on fire and is totally sensitive to touch, My calf feels more like clamping and is sensitive to touch. My orthopedic is saying the same thing...nerve root irritation...due to swelling and scar tissue formation...give it time...CT Myleogram showed a little bone fragment, but he says that our bodies absorb bone over time...Went the course of oral Prednisone and that didn't do anything for my pain either. I went off the 6 5mg/day Hydrocodone three weeks ago and now I'm down to about two or three tablets per day, which take just about enough of the edge off that I don't go absolutely off the wall. I also get minor relief from "icy/hot." It hurts so much when I rub the icy-hot on my toes, that it kind of feels good when I finish rubbing it in. Before my surgery my leg was weak and numb...now it burns, I keep telling myself its my nerves "waking up". We are trying a lumbar steroid injection on the 17th of Feb. I am hopeful, there will be some relief. Guys keep me posted, I want to hear the cures. Your a tough cookie for hanging in there so long.
  • cbskibum, I wish you relief too.

    This nerve crap is becoming very frustrating. I had lunch with some co workers last week and they say I look fine to come back to work. I have a very physical job working with unpredictable kids. My doctor isnt ready to say yes, just for me to get knocked over and stuck on the floor. I would need the teachers aides to pick me back up.

  • don't worry about what others say! people were always telling me "you look great" bla bla bla...with our type of job...YOU know best when you are ready! good luck with the mri!
  • OK, all the MRI says is, "Rather extensive epidural fibrosis posterior to the thecal sac but also extending anteriorly along the left lateral aspect of the thecal sac to surround left S1 nerve." It also covers the DDD in the other levels, arachnoiditis and herniations, I dont know if those have changed since the last MRI since that was done at the doctors office in July.

    Just scar tissue causing the pain I guess. Does that go away when it is as extensive as they say? No wonder my legs are like they are.
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