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UPDATE:Help!! daughter post surgery for L5/S1 fusion with sudden severe leg/foot pain

meisharenemmeisharene Posts: 8
edited 02/10/2015 - 7:09 AM in Recovering from Surgery
It has been several months since I have updated. I joined the group last fall, was blessed by the amount of support I received even though it was my youngest daughter going through surgery. Thank you to everyone who helped me, I believe it helps to have all sorts of insight. Below is her background this far:
Aug 2014 L5/S1 fusion with screws, due to 33% slippage
Nov 12, 2014 T3-L4 magnetic rod placement for significant scoliosis
Dec 3 2014 lumbar surgery to replace screw that migrated out of place.
Kaylee is 9 years old with Mitochondrial disease/ Ehlers Danlos/ Juvenile scoliosis
These last few months have been awful to say the least. He poor body has been through so much surgical trauma. Our scoliosis surgery lasted 8.5 hours which was the longest time of my life. She lost a lot of blood but was spared a transfusion. Recovery has been the hardest, not really knowing what is normal and what is not. We had a set back and required surgery 3 weeks from the first to fix a screw that came out of place.
It seems as we get a few steps ahead, then new problems or pain sets in and we feel hopeless. I have realized it is going to take a lot of time to heal. She is only six months out from her first fusion. Her lower back has been operated on 3 times within a four month span. We have since been dealing with a "new" bulging disc, they felt it could be from the pressure of the hardware. This pain has kept us up at night for weeks now. For some strange reason it is worse when she lays flat, the pain is barely tolerable. We are so tired and frustrated. The doctor does not seem to think or feel that the disc is significant. I feel it is something, she was doing well until she felt a pop and then a burning in her back. It was immediate pain and this has not let up since. She does great during the day while up, but almost instantly when she lays down the pain starts.
We are dealing with a lot of nerve pain, she is on gabapentin for this. She has no pain meds left, we just get by with ibuprofen and Tylenol. We are going to try a hospital bed at home to see if that Wil help with the positional pain.
I feel I am rambling but I am lost and confused. This surgery was needed, yet it is hard to know we will need at least 1-2 more major surgeries before we can fuse permanently. Any recommendations on pain management, ways to make her more comfortable with positioning etc would be helpful
I appreciate any feedback at this point, she is having a hard time emotionally and we are trying to deal with that. I can't imagine what she is going through, she is always trying so hard to be strong and happy. Thanks for letting me vent a little, there is just so much more than we realised we were signing up for.

My 8 year old daughter is 6 weeks post spinal fusion of her L5/S1 due to a slipped vertebrae. She has many health issues including a rare neuromuscular disease, but this fusion and severe scoliosis is taking over our lives. She had decompression with instrumentation done. She had been doing pretty good. She had right leg weakness/numbness with pain before surgery. That seems to be okay now but it is now popping up in her buttocks. We started gabapentin for this last week.
Sunday she started complaining of both feet hurting really bad. Now it is spreading to the lower leg. It is so bad she can barely walk. With Resting the pain is a little better, but extreme with weight bearing. ER doctor felt it is nerve related but we can't see our surgeon until tomorrow. I am having to carry her, I am surprised this came out of no where. Trust me my daughter has learned to deal with pain on a daily basis, she is so strong and has a high tolerance. So when she says it hurts, it REALLY hurts. She is having another surgery Nov 12,2014 to place rods in for her scoliosis.
Sorry this is so long, but I am frustrated and worried. It has been a rough battle. I have read on this site through Google that many people are having this problem. Any advice would be much appreciated.

Meisha and Kaylee Mae


  • Oh my goodness! I am sitting in the hospital right now, waiting for the same fusion and I can't imagine the pain your little 8 year old must be experiencing. I don't have any advice, just sincere sympathy. I hope your daughter's pain is able to be managed and that she can go back to be a little girl asap.
    Left leg radiculopathy/sciatic pain
    L5/S1 microdiscectomy - May 30, 2014
    L5/S1 microdiscectomy - Aug 14, 2014
    L5/S1 TLIF - Sept. 24, 2014
    Left-side screws/rod removed along with bone fragment Dec. 29, 2014
  • I don't have much advice either, but wanted to offer my support. Being a mom, I know this must be heart wrenching to see your little one in so much pain. I'm sure if you could switch places with her, you would. I am truly sorry for both of you suffering through this & I hope that relief finds her quickly.

    Have you considered looking into modalities of Traditional Chinese Medicine? Not as a replacement for her current tx, but something to complement it. I went through a tx package that included acupuncture, cupping, moxibustion , & homeopathic injections. All with my treating physician's approval (Interventional Spine Specialist). The holistic Dr was also big on a diet that followed TCM, including juicing. At very least, I found the tx relaxing, but also found some relief from it. Just an idea to consider.

    I wish the best for you & your daughter :) .
    8/28/14 Discectomy, Laminectomy, Foraminotomy L5-S1
    9/15/15 Surgical Debridement of infected surgical incision & drain seroma; wound vac applied
    10/21/14 L5-S1 Osteomyelitis & Discitis; 10/23/14 Bone & Tissue Biopsy = MRSE
  • A side note to you- best of luck in your surgery! My thoughts & prayers are with you. Keep us updated on how you are doing.

    8/28/14 Discectomy, Laminectomy, Foraminotomy L5-S1
    9/15/15 Surgical Debridement of infected surgical incision & drain seroma; wound vac applied
    10/21/14 L5-S1 Osteomyelitis & Discitis; 10/23/14 Bone & Tissue Biopsy = MRSE
  • PeggyMcPPeggyMc Glendora, CaPosts: 17
    Im so sorry to hear about you little one and her pain. I'm sure that you have since spoken with her doctor and he has told you that this is normal, however frightening! I am 8 weeks out from fusion surgery ( ALIF PLIF 360 ) and the nerve pain in my toes, foot, calf, thigh and bottom, have been the worst part of this surgery. I find that cold packs on my foot, make it feel some better. I sometimes use a heating pad on my thigh as well. I also take the Gabapentin (Neuronton) . It is getting better, but it was horrible! I will have you, and your daughter in my prayers. I have children too and I would feel the same way if they were in any pain....Take good care and please keep us posted
  • Thank you everyone for the kind words. It has been a frustrating week. It seems each day her pain is in a new area. Her knees are bothering her I think due to the way she is walking and the pressure it is.putting on her body. We met with the surgeon and it did not go well. We have had some problems with him lately. He dismissed it being due to her spine. He said if it was nerve pain it would not be in both legs. I completely disagree with him 100%. He didn't even really listen, just told us to see our neurologist. We then seen him, he also agrees it is nerve issues. The biggest question is why it started overnight. He thinks she may have injured herself some how or just moved the wrong way. We are awaiting an MRI. In the meantime she has been using her wheelchair or having me carry her. She is almost up to the full dose of gabapentin but it does not seem to be helping. I have tried heat/cold but she is too sensitive. Hopefully we will come up with something soon
  • Unfortunately, nerve pain commonly flares up post op.......it can appear suddenly and spread , change locations. This is especially true if she had nerve compression prior to surgery. Think of it this way.......the nerve is pinched off or compressed prior to surgery, then the compression is removed......you know how the arm or hand feels if it suddenly wakes up after falling asleep......well spinal nerves are similar but the pain can be burning, stinging, shooting, like walking on hot coals, electric in nature, tingling, and all of those sensations all at once......
    Then you add the moving around of the nerves, muscles and other structures involved in the surgery, and you wind up with this sudden , changing nerve pain.
    What dose of gabapentin is she taking? Since it is moving and changing, that usually means that the nerve is firing again, and will settle down but it can be a rough ride while it does.....
    Gabapentin has a large dose range, and in a pediatric situation, you need to discuss the dosage range with her doctor....they may have to increase it for her to get benefit from it.
    While walking is difficult, it is important that she does walk on it.
    She also may have some post op swelling which is also contributing to this, so they may want to give her a steroid taper to reduce inflammation and swelling..
    Nerve pain is horrible to deal with, and can be unrelenting for an adult, so I empathize with your little girl and you....
    Hang in there.
  • My prayers goes to you and your family.
    I ll ask people to pray for her.
    She and your family needs all possible help and prayers that the little girl will be fine.

    36y old female, s1-L5 micro discetomy 18th of September 2014
  • Thank you everyone. Sandi, she is currently on 300mg , we are working up to the 400mg dose. We.have to be careful since she has seizures and this could affect her. I feel it has helped with her buttock pain but it is not doing much for her lower leg pain. I just hope she gets some relief soon. With her next surgery fast approaching, I am worried about her being exhausted and tired of pain. She needs her strength to get through the next one. It has been a hard and emotional ordeal this far.
    Meisha and Kaylee Mae
  • In reading your posts I'm glad you came here... Keep us posted on your little girl.

    Hugs to you.
  • I am wishing you both the best......and I too, hope that it settles down quickly for her. If she has seizures , the doctor may want to take her off her other seizure medication and use the gabapentin, since it is also an anti seizure medication.
    I don't know if that would be an option but since the medication is used to treat both conditions, it might be worth discussing with her doctors to see if she gets better control over both conditions using one medication.
  • I am 2 weeks out of 360 lumbar fusion and the pain you described started 10 days after surgery. I can not imagine how your daughter is dealing with this as I am having to find some solutions also. I have been provided Valium, Steriods, Gapapentin 900MG 3 times daily and diazapam. This combo has al least allowed me to get some sleep but the pain is still there.

    I wish you and your daughter the best. I am glad this forum is available because like many others I have felt like I was the only one but I now know others have dealt with this also. Comforting bur I wish it was night happening.
  • sandi said:
    I am wishing you both the best......and I too, hope that it settles down quickly for her. If she has seizures , the doctor may want to take her off her other seizure medication and use the gabapentin, since it is also an anti seizure medication.
    I don't know if that would be an option but since the medication is used to treat both conditions, it might be worth discussing with her doctors to see if she gets better control over both conditions using one medication.
  • Thank you everyone for your advice and support. She is doing better, I truly think the gabapentin has helped. She is able to walk better. Her surgeon was not helpful, he was unprofessional and we have switched since. He told.me flat out it had nothing to do with her back and if it was nerve issues it would be in just one leg. So not true, and after reading so.many stories on here I do not believe him. We went to our neurologist, he helped us so much.
    We did an.MRI and her new doc will review it tomorrow. They said there was a.lot of artifact in the area of her fusion due to her hardware so it could not be for certain about nerve issues. But they did say she has a L4 annular bulging disc that was not there before surgery, but it did not appear to be pushing on a nerve. Has anyone had a disc problem after a fusion in a close area. I am baffled, but regardless I am happy she has some comfort. I just do not.understand why this is all happening.
  • They may want to order a CT scan, to see if they can see clearer images. The hardware does in fact, cause artifact issues due to the magnet. I am glat that she is finally getting some relief.....
    It may have been related to swelling too, along with the nerves being irritated that caused the flare of nerve pain....but hopefully, the medication and time will settle it down for her.
    A disc bulge may be present due in part to how she lay during the imaging, but it can also bulge due to the hardware being present or muscle spasms as well since she is post op.....
    Hopefully, the right dose of gabapentin, and the consult with the new doctor will give you both answers and she will be feeling much better as time goes by.
  • tshae72@aol.comttshae72@aol.com Posts: 2
    edited 10/12/2014 - 3:48 PM
    I'm 10 days post l5 s1 decompression w/plate & screws. I always felt like a lot of doctors thought I was exaggerating or wanted attention. I started out with my primary, then spine specialist EDITED, all along still seeing my Primary, who I believe was the only one listening and believed me 100%, and my spine dr. October 2 this year my back dr finally did fusion. Low and behold, after surgery he stated that my back was a mess! So after dealing with this for 12 years I finally got the look, although not the words, wow now I believe you. Keep fighting, changing doctor's, and do your research. Don't ever let anyone tell you or try to make you believe you are crazy. Prayers to all.

    Post edited to remove medical facility names. Posting of physician or medical facility names is not permitted on Spine Health forums.
    Tawanda Shay Rosser
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