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Losing my mind-- Post TLIF spinal fusion

songbird62ssongbird62 Posts: 5
Hi, I'm new here... so please forgive me for coming off as the newbie I am sure that I will. I would say this has been covered here 50,000 times (maybe a slight exaggeration) but I had the TLIF spinal fusion L4-L5 on October 18th of this year. I immediately had relief upon awakening with the pain down the back of my legs. However, I also immediately noticed a "new" pain in my right groin area, down my right leg, and in my right hip. I told the neurosurgeon who didn't seemed to be too concerned at the time. I was in the hospital 5 days, had some complications (had to have a blood transfusion, had a bad migraine, etc etc). Anyway... things were looking better until this past week. I saw him a few weeks ago and told him the pain was still present, but it wasn't real bad at the time. I was so excited and then this "new" pain I was having got worse on like Tuesday... It was really bad in my hip and slowly moved down to my thigh area, groin and even further down. By Thursday and Friday, it started moving into my calf and ankle. I don't know much about this kind of thing but I tried to reach my neurosurgeon every day and no return call from him or any of his PA's, nurses, residents, etc. It was very disappointing not to have one person able to return my call and just answer my question as to whether this was normal or not. My family got so concerned , as well as myself, and I finally went to the ER (the hospital I had this performed at is 4 hours from where I live at a large hospital). The ER did some xrays and the ER Doc told me it appeared I had Sciata (S-1)... this is something new to me as my surgeon never told me this. FINALLY I get a return call late yesterday from one of my surgeon's PA's and she was very short with me (almost like she was ticked off she had to call me) and she said there is no way they can tell from an xray if you have a sciatica problem. She was very short and told me all he could do at this point was give me flexeril refill and they could not work me in any quicker than Dec. 17th (which was my followup appt). I almost felt like she was saying (excuse me because I don't use bad language) but it was like she was saying F U! We don't care! I am so frustrated. I've been crying myself to sleep... crying all day. Trying my best not to take my medicine too early or too often or too much because I might run out before it's due again. I just am not dealing well at all. ER gave me a shot of demerol and phenergan which barely took the edge off, but at least it did. It got so bad today that I almost didn't care if I just died already. Is this normal following this type surgery and do I have any hope of it actually going away? Anyone else experience it in this way and if you did, did it go away eventually? I read where it could just be inflammed from the surgery... Just soooooooooooooooooooo frustrated :( Thanks in advance to anyone who can tell me anything that will help. I'm desperate and very miserable and I don't know who to talk to about this. :( The surgeon's office sure doesn't seem to care and my hospital isn't communicating with their hospital grrrrr ... Sorry for writing a novel!


  • humanshishkabobhhumanshishkabob Posts: 65
    edited 12/01/2012 - 2:40 PM
    Dear Songbird, sorry you are having such pain. Do you have a good GP? Call him or her as soon as you can. The surgeons will only give a certain amount of pain meds. Although I had different surgery than yours, I experienced new horrible bone pain in my hip/pelvis/sacrum/iliac region after surgery because bone, muscles and nerves were moved around. I also had an "unusual" reaction to surgery and had to stay longer in hospital. Please don't give up--I felt the same way the 1st 2 weeks after my surgery when I got the run-around from my surgeon and his "team" because I was in so much new and different pain (7-10) that they claimed wasn't possible. Please call your GP ASAP for help with meds, demand that a visiting nurse be sent and keep bugging your surgical team. If it is nerve or sciatic pain you might try things like Neurontin, if it is muscle pain-muscle relaxants, and if it is bone pain maybe Celebrex or NSAIDS in conjunction with other meds. Don't give up! I called and saw my GP and it was amazing how quickly I started to get help with pain. Then my surgeon's team got involved, too. After 3 weeks I began to feel better after days and nights of uncontrolled pain. I still have pain, but I can now sleep through the night. Contact your GP and make sure he/she was sent a copy of the surgeon's report and the hospital record. I hope you get some help and that you feel better--unfortunately, these surgeries make us take time to heal. Hang in there and best wishes for less pain--let us know how you are doing-

    L5S1 discectomy/laminectomy for massive extruded disc strangling nerve root/complications 24 hours post-surgery 10/2012
  • Hi there humanshishkabob (cute name)... It means the world to me (I know that sounds crazy) that you took the time to just answer me and tell me your experience. I already made up my mind this morning when it took me about 15 minutes (seriously) to get out of bed and make my way through my apartment, that I will call my local doc in the morning. I even let out a holler once...My poor dog looked at me like "what the heck is going on?"Problem is, I'm not sure she can do much, I'm already on Percocet, Neurontin, Muscle relaxers... this just got really serious on like Mon or Tues of last week. I was feeling much better from the surgery I had. But this is totally new pain. I did feel it immediately following surgery, but never dreamed it would be a bigger and worse problem that what I was experiencing over the past couple of years. I'm hoping that she will at least raise my neurontin to a larger dose that's enough to kill this pain I'm experiencing. I'm seriously just going to try and live moment to moment because if I think about tomorrow, I will just cry more and get more depressed. I was ready to pray for God to take me yesterday because I wouldn't do it to myself. I don't mean to sound pathetic in any way.... it's just the worst pain I've ever had to deal with... and I've had serious migraines since childhood. My biggest problem is that I was referred to a university hospital that is four hours away that specializes in spine problems, but my neurosurgeon is also their sports medicine doc/surgeon for the football team there (which is very popular) and it's their season and he's extremely busy. But he is a good doctor and surgeon and has excellent credentials and is very concerned when you see him in person, but you CANNOT reach him on the phone.... One of his female PA's talked to me Friday (after me calling every day over and over and no one returning my call) and she was very short with me (this isn't the first one of his female PA's who have treated me this way). He takes his time with me during my appointment, but after that I'm on my own.... and again it's four hours away. This is gonna be agony until I can see him on Dec. 17th. I do have a TENS unit that seems to be helping some, and I'm putting ice on it and have been using less heat... because the ER nurse here told me that would most likely inflame it. I don't know how you people who have worse pain than I are dealing. I feel for you all :( Thank you again so much for taking the time to just answer me. It really does mean a lot. I hope you feel better soon and thank you for the encouragement!
  • The way your surgery doc and his staff has treated you. You are still his patient. I am deeply pissed that a surgeon or his pa staff treated you this way. And I agree call your GP... And call back that surgeon and leave msg that you want only to speak to him/or her.
    I was so very lucky my surgeon (if he wasnt in surgery) called me back himself, he even called back if my hubby called.
    When you get this pain under control...you keep track of the calls and while you can recall the words right it all down.
    And I would report them.
    If your GP won't help you, you go back to er as many times as you need to ...insist they call your surgeon, which they should have after this time.

    All our bodies react different to surgery and healing. I for one had days n nights I just paced the floors and prayed.
    There is hope, you can't give up, as you are not yourself at this time.
    Make sure you have family or someone with you. At times like this so much is setting in, depression is huge after surgery.
    Tell your GP you are really loosing it, and maybe (if they are good doc) they will put a call into the surgeons office.

    It just sickens me the way they treated you. Please please hang on. It sounds like you had much harder time than most after surgery.
    Do you have xrays, mri's make sure you have all discs, reports, make a pain journal of sorts, so when you go into er or docs they can see whats not working.
    Take the flexerils on time and try stay ahead of pain, and if your screaming, crying in pain call doc and keep calling surgeons office, if the same lady returns your call you let her know ty for calling me back but I prefer to speak to my doc or a RN . There are more than one person on staff.
    I had only one bad staff member and I just nicely told her, look perhaps we are just not understanding each other, can you let me speak to someone else.

    Cotton ball hugs
    remember you have family and all of us
    if you need to chat pm msg me I can meet up with you in chat, just always good to talk to all of us who do understand. We all have had these hell pain days.

    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • Dear Songbird, I agree with stars in her eyes. By the way, the ER nurse is RIGHT. Don't put heat on--only ice until the inflammation goes down. Also, the acute pain and the meds you are on--both cause depression so blame your crying jags on them, not yourself. When trying to reach the unreachable surgeon, you might ask to speak with the nursing supervisor or patient advocate--I tried that (there weren't any) but as soon as my GP started putting pressure on the surgeons's team, I got help. Do keep a record as best as you can--pain levels, symptoms, meds, what helped, calls made and received, etc. My star surgeon actually CALLED me last week because I sent a physical letter to him before Thanksgiving requesting a written treatment/recovery plan and the chances of my being able to return to work in January. Don't let the hospital bureaucracy get you down. Unfortunately, we have to be our own advocates when in tremendous pain. I wish you all the best and far less pain--
    Glad you are with us!
  • Thank you for your kind words. Knowing people understand (my word of the day) and genuinely care means a lot. And I do have a wonderful family that checks on me and brings me food, etc. I, too, am appalled at how I was treated by his staff. The girl that answered the phone like 3 times apologized up and down and said she was also disappointed that no one had called me back. I'm assuming the nurse was po'd because she got the message I was disappointed and it was close to 4:30 when she called back (close to quitting time, weekend coming on, etc.) everything I said to her was either interrupted or she sighed and repeated what she'd previously said to me. And kept telling me, "well he cannot see you until the date you are already down to come back... and "there's no way that your ER doc could tell from his tests that you have sciatica pain, so we'll just order an MRI and CT Scan along with Xrays before your next visit" UGH if there is something more serious going on, I hope they can answer for allowing someone to be in pain this long. I do plan to share with him what has happened, because it's something he needs to know, altho it probably will do no good. He's kind, but he's popular and has an entourage with him everytime you see him. I was told there was no surgeon who could do this surgery in my home town... but the ER doc acted annoyed with me that I had traveled away from here to have the fusion, even though my GP referred me there. SIGH! I'm so very frustrated, sorry for rambling on and on and on and on....:( thanks again!
  • songbird62ssongbird62 Posts: 5
    edited 12/02/2012 - 11:43 AM
    Thank you both again!!!! Gentle hugs!
  • Dear Songbird--I hope you were able to connect with someone who was able to help you and that you are feeling better. I hope it went well and that you persevere about getting what you need. Good luck-
  • dbhamddbham Posts: 42
    edited 12/05/2012 - 8:00 PM
    I agree is sad when docs treat patents like dirt. I know how bad sciatic pain is. That's around 90% of my pain right now. All I can do is lie flat on my back with my head raised up with pillows. Once I find a position where there is no pain I won't move till I have to.
    Sciatic pain sucks! Pain pills have not helped with the nerve pain.

    I hope as the days go by your pain level will subside.
    L4/5 herniation13mm sequestered fragment L5 root compromise.
    L3/4 annular tear.
    L2/3 3mm bulge and annular tear.
    Tens mpo combo system
    Epidural L4 L5 28Nov12 / 12Dec12 / 26Dec12. All no relief :( SO FAR
    MicroD L4 L5 May 23 2013
  • Humanshishkabob,... I'm sorry I just saw where you asked for an update. I ended up seeing my local family doctor because they finally did connect with me from neurosurgeon's office, but told me that there was no possible opening until my appt, which is this coming Monday (I've been counting the days and I've almost made it). They have me scheduled for a CT scan before I see him, which is a little progress and they also refilled my flexeril. My local Doc upped my neurontin, which I think helped me more than anything, and they gave me a steroid shot in the hip. I've been sitting against ice pack for nearly an hour as soon as I get up, and then I can move around a little easier. I can tell it's getting better every day, but the pain is still bad and I'm really concerned that something is lying on another nerve (possible sciatic nerve). Guess I'll know something in 4 days (Thank God!) Oh and I started PT this week, so I'm sure that will help eventually if I'm good and stick with it like I'm supposed to. This is still, by far, the worst pain that I can ever remember experiencing. At least before the surgery, I could find a position to sit and relieve it. It would only have gotten worse, tho, because where my lower back was out of alignment, it was laying on a nerve and I guess "pinching" it... So I didn't have much of a choice :/ Thanks dbham for posting also... Hope you all are having a good, pain-free day!
  • humanshishkabobhhumanshishkabob Posts: 65
    edited 12/14/2012 - 4:00 PM
    Dear Songbird,
    I know it's been really rough for you, but I hope your docs have figured out more strategies to alleviate your pain. I had a strangled nerve and still have pain after surgery, although it is slowly getting better. Please let your PT know immediately if something causes you to be in greater pain. I am learning that nerves take a long time to recover and it is very frustrating. I am glad the Neurontin has helped. I do ice and heat. Sitting for me is the worst but I set the timer so I don't aggravate it. I, too, have a morning ice/heat ritual and 5mg Vicodin before I start moving around for the day. I wish Neurontin could work for me but I can't take that class or the Cymbalta class drugs. I wish you good news on your CT and less pain. Hope you have a better week!
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