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I had XLIF (Extreme Lateral Interbody Fusion) surgery 19 days ago to repair scoliosis, which was caused from 20 years of degenerative disc disease. After reading for more than an hour, I have not seen where anyone else has had this. My problem is nerve pain, which hurts worse than the shingles I had two years ago. My upper thigh hurts, pain in the groin area, and around my incision. I was told he went through a nerve to perform the surgery, so this pain is normal.

I feel like I did not get proper dismissal instructions from the hospital or my doctor. I know I need to walk every day, but how much? I was told four days ago that I need to save the Percocet to be able to sleep at night, and learn to deal with the pain during the day, because my doctor will not give me any more pain meds before he sees he again, January 11, 2013. That is NOT going to happen. Neurontin and Valium don't seem to be doing any good.

Does anyone have any ideas? Has anyone else had this surgery and dealt with this same pain?


  • Welcome here.

    What level/s were fused? What was you fitness before the op?

    XLIF specific info can be obtained by putting XLIF into the search function at top of the screen. There are 600 XLIF results including posts and articles.

    Many times the surgeons expect your GP to manage your pain relief. That's how it worked with me. The surgeon gave some meds via the hospital and it was the GP who prescribed from there on. Sounds like (from your comments) that you are in nerve pain. So I suggest you discuss your pain with your GP who can increase you dosage appropriately. Now, it may work differently in your country, if that's the case, others here may be able to comment.

    Some of the articles here do discuss XLIF surgery complications that have symptoms as you describe.

    Hopefully other members will have first hand comments.
  • Have you seen this Dermatome Map of which nerves affect what area of the body?
  • Although not all of our posts include the information right up front, many of us who have had fusions did indeed have scoliosis before surgery. The bend in my spine was not huge, but I know several here had severe curvature before surgery. Find the posts by Bob in the Forest - his curvature was so severe that his ribcage was rubbing on his hip bone before surgery. I agree with Dave - see your GP for pain management. You may have to sign (if you are in the States) a DEA agreement that specifies that you will get your pain meds from him and from no one else. Unfortunately, due to many people shopping around for drugs and trying to double-fill by getting scripts from numerous doctors, these guidelines need to be followed by those of us who are legitimately suffering. After my fusion, I had severe pain in my legs - to the point that I could not hold them still. I kept squirming to find a comfortable position that did not exist. I was given neurontin and then gabapentin, neither of which worked. My insurance did not want to pay for Lyrica, but my doctor wrote them a justification saying it was the only thing that would work. It did help immensely. Three times during my recovery, which lasted at least 18 months, I experienced severe bouts of the leg pain. The Lyrica was a godsend in each instance.

    Do go see your GP and explain your situation. Just make sure, if you sign an agreement, that if you go back to the surgeon and he offers you a refill, you refuse it, as you are now bound by the contract to get meds from only one person.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • Monica101760MMonica101760 Posts: 2
    edited 12/14/2012 - 6:49 AM
    I am going to see my surgeon again Tuesday, so I'll talk to him about my GP managing my pain. What concerns me most, is that the surgeon's nurse told me that very few people experience this nerve pain. I want to talk to him about his surgeries and percentage of patients who have experienced it. And maybe why I have. It has improved some, but mostly from after taking Percocet. I haven't noticed any improvement with the Neurontin, but I know I'm ready to get off the Percocet and go to something milder. Also, my scar is thick and painful. I don't know if this is normal, but guess I'll find out in four days.
  • if your surgeon thinks he does something special that prevents nerve pain, but if you read through the posts here, you'll find that it is a VERY common thing after spinal surgery. To expect that you're not going to have it is fantasy, in my opinion. Do tell him that you want one person to manage your pain, whether it's him or your GP. Considering that your surgeon expects that you will not have pain following a fusion, I'd find someone else to control the pain. This is just nuts.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • most surgeons want to do just that and that is surgery. I agree with everyone else in that you need to get your after care, at least pain wise, through your GP or pain management doctor.

    Don't be shy about taking pain medicine as you will do better with healing. That has been proven. You are on a mild pain med as it is. Why do you feel you need to get something less strong. Are you afraid of getting addicted or something else?

    There are a ton on nerves in the way when going in through the side. On of the reasons you don't see as many people having fusions done through the side is the nerve issues. I would say his nurse needs to keep her bazoo shut as what she said doesn't go with what has been documented by others with a pay scale way, way higher then hers/his.

    Keep in mind that you are still very early in healing from a fusion. Fusions are a big surgery and very few bounce right back. You are not even 3 weeks out and I would guess that what you are feeling is normal, but the final on that needs to come from you surgeon. Ask him how long he plans on seeing you. Most surgeons only perscribe the first bunch of drugs when you are released from the hospital and then you are expected to go elsewhere, at least that has been my experience.

    Good luck with your conversation with your surgeon and with you nerve pain for that matter.:)
  • That I am four years past my surgery, and I still have a standing prescription for oxycodone -- percocet without the tylenol in it. I don't take it all the time. I don't need it most of the time. However, if I bend or twist the wrong way, I can cause myself to become very painful again, and then I'm grateful I still have the meds. I don't know how many levels you had fused. Believe me, I know even one is not fun. I've had three levels fused, so it's quite noticeable when I move.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • The pain medication you are taking is pretty mild for what you've been through, and I would question the doctor about it. You probably don't need to be drugged up to the point of stupor, but you do need to be able to move, particularly, to be able to walk.

    My xlif was done 12/11, it was done because of a badly herniated disc and essentially crumbled facet joint which was giving me horrendous sciatica symptoms. The neurosurgeon commented to my husband that he was surprised I was still walking preoperatively. Intraoperative nerve monitoring was done.

    Right now the worst of the symptoms is anterior thigh weakness, intermittent numbness and pain. I have mild incisional tenderness and ITCHING. The staples came out on the 19th, and I felt better. I am still taking Lortab 7.5 every 4 hours as needed to max 6 per day, and Valium 5 mgm three times a day as needed to deal with spasms. The spasms occur if I sit for too long, and I've found that if I get up and walk around for five to ten minutes every 45 minutes or so, I do better. I started home physical therapy on the twentieth, and do seated and standing exercises three times daily. I was able to get a nurse's aide out here to help me shower (we were renovating one of the bathrooms before I got hurt, and there are no hand grips or anything in the small bathroom, so I really need the help in terms of getting the weak leg over the 16 inch high bathtub in order to shower.) It felt heavenly to have someone scrub the heck out of my back today!

    When I had the staples removed, the PA encouraged me to call back for refills for both the pain and antispasmodics. I discussed the anterior thigh symptoms with him, and he said that roughly sixty percent of patients experience this postoperatively. They had, to be fair, warned me about "charlie horses" postop, and told me that that was generally the worst of the postop experience. I digress, but one night it felt like about ten horses were running the Kentucky Derby on my left thigh--LOL--and the cussing I was doing would have made a stevedore blush!

    Of that number (the sixty percent with the psoas nerve wakeup symptoms,) he said that approximately half experience complete resolution of symptoms within three months postoperatively, and the rest experience improvement to near total relief within one year. Both the surgeon and the PA encouraged me to "stay ahead of the pain," and not attempt to start tapering down until I'm pretty comfortable. That practice will write pain scripts to six months postop and then refer to pain management practices.

    My general health history is excellent; no chronic illnesses except osteoarthritis in both knees and an old rotator cuff and nerve impingement years ago, and I have been athletic my entire life; in fact, I am a retired professional ballet dancer. The rest of my spine looks okay on MRI, with good intervertebral spacing. I am still slender, but have excellent bone density. Actually, I think the shoulder surgery was worse.

    You really want to keep ahead of the pain in order to do rehab exercises, which, along with bracing and good nutrition, are going to be the keys to a successful fusion, which will resolve the pain that drove you to the OR in the first place. Like I said, I'm doing my exercises three times daily. Of course, at the end of that, I feel as if I just danced the entire last act of Swan Lake (come to think of it, the same muscles ache!)

    Everyone is different, everyone starts from a different point preoperatively, and everyone heals at different rates and with different degrees of success. At day 17, I'm still using a walker about fifty percent of the time, mostly because I do not yet trust changing sensations in that left thigh. I can, however, stand firmly on my right leg and maintain my balance for over a minute (which impresses my PT no end,) and if I knew my doctor wouldn't kill me, could probably do much of the kind of exercise I used to be able to do before I got hurt.

    I actually view the presence of the burning charlie horses as a sign of improvement: If the nerve was completely injured, I would feel nothing. Nerves do very weird things when they come back on line. I heard someplace that sensory tends to return faster than motor, meaning sensations will start coming back before movement and strength get back on board. I try to think of my bizarre sensations as the nerve "waking up" and rudely demanding coffee, if that image helps you any!

    I'm happy to report that the gawdawful pain and burning in my feet and lower legs, as well as the shooting sciatica, that made me consider surgery, has been GONE since I came out of the anesthetic. Like I said, I have some lower back aching if I sit for too long, but it's manageable.

    I think if I were in your position I would keep calling the surgeon, daily if necessary, and get your pain management needs addressed and under control so that your recovery will be enhanced. GPs aren't necessarily well versed in terms of pain control, so you should also get a referral to a pain management specialist. Put it in those terms if you're still dealing with the surgeon: Tell him/her that you can't do the things you need to do to be more functional if your pain isn't managed. That seems to get their attention better. All surgeons like successful patients, they tend to get rated on their statistics.

    I'll add you to my prayer list, and hope that things get under control soon.
    I'm not a spinal diagnosis. I'm a human being with a spinal diagnosis.
  • I am really surprised at the frequency of this significant side effect of a XLIF procedure; plus the amount and duration of the pain medication required.

    Also, I have read a few posts about people having nerve damage and that this is relatively common for this procedure.

    Hmmm..... Raises lots of questions about the risks of this procedure vs other approaches. Interesting.

    I wonder what are the results of studies on the comparative risks of different procedures for fusions?

    Anyone know?
  • But I can say that I've had post-op nerve pain after both my lumbar fusions and needed a walker. The first one surprised me and I wasn't prepared so hubby and MIL had to rush out one day to find me a walker. I was prepared this time and have two walkers.

    I saw my PA yesterday and he says nerve problems post-op are very common because they really invaded the space in my back and the nerves are bound to be upset and revolt. They have and are.

    He also asked about what meds I'm taking and I told him I'm trying to stay worth the Norco and Valium and only use the Percs when things get really bad. He sai that was not a good idea. Why be in pain when you have meds he's willing to give me that help more? He said, "take the Percs! Do whatever you have to to be comfortable because this is a very painful recovery." he then went on to explain some of the things they did during surgery, like us heavy duty retractors, that caused deep bruising as well as visual bruises. He said they cut out bone which is like fracturing your leg.

    There is so much going on after surgery that for the first 3-4 weeks, you need to keep yourself as comfortable as possible. Take strong meds when necessary, if it hurts don't do it, pace yourself because you'll tire easily, etc.

    So hang in there and just take care of you. It's all about you and healing and being as comfortable as you can. The walking will come (do a little now and increase as you can as time goes by) and sleeping is always good for healing, so daytime napping is a-okay!

    Keep us posted!
  • there was no way i could have walked a mile a day its been a year and i still can't walk a mile a day !!!.i can manage a few lengths in the pool but i am a good swimmer .i can't walk to to pain .for the first 6 week after my ALIBi was unable to move from my recliner .some people can't do pt or walk after operations we are not all Th same ..when i told my consultant i was unable to do the exercises he said HE DID NOT THINK I WOULD BE ABLE TO MANAGE !!.so they know !! ..all he says to me know is swim as and when i can ..but my ALIF has been a failure
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
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