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I feel like I'm going crazy

DLynnDDLynn Posts: 12
Hi all, new to the group here. I have read a ton on here and decided to post today. I had a L4/L5 & L5/S1 laminotomy and mini discectomy in July this year. I have had no relief from the surgery. I have had 2 MRIs, X-rays, shots, and a myelogram. I have a EMG appt. for December 1st. My Neuro says she belives that I have chronic nerve pain syndrom from how bad my herniations were and waiting a month to have surgery. I am now dealing with the leg pain and lower back pain that never goes away. I am taking flexeril and percocet 5/325 for meds. I have tried lyrica, gabapentin, and Amitriptyline. I am laying here in bed and can't seem to get ride of the pain enough to get it off my mind. Called my dr she is out of town this week. I feel like this is me and its in my head. I am 31 years old and a health person til I slipped and fell. I thought my mind was going good by now I am starting to get depressed. I feel that I am a child my boyfriend is having to take care of. I can't do much of anything anymore. Sorry I had to vent today has been my breaking point.


  • Anyone out there relate to me?
    Meds that work for them?

    Thank you
  • dytis. In time I am sure you will get more responses. This is sadly a topic most if not all of us SH members can relate to at one point or another.

    I use to fight depression over my injury a LOT. When I came here I was seeking a life line and TG the members here gave me one. They slowly pulled me back to the shore of sanity ;)
    When I joined here I was not able to even dress myself.

    It is not a quick process and not always a smooth path getting back to shore. Many things in our mind set has to change first.

    Please hang in there and I am sure 1 step at a time you too will gain new ground :D

    PS: Please share what things you are able to do still.

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I take Cymbalta for my leg nerve pain and it really helps. It's good you're getting the EMG Dec. 1 so you'll get more answers hopefully. I heard nerves grow about a mm a day so I hope you have success down the road.

    I find alternating ice and heat 15-20 minutes a few times a day helps also. I hope you get some relief from this nerve pain soon. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • MsHumptyDumpty I thank u for taking the time to talk with me. I am able to still put some of my own clothing on, I can wash myself but not my legs, I am able to still walk(which I am grateful for), well i can still do a lot of things and I know things could be a ton worse. I am grateful for my bf and family. I realize there are people out there who are much worse then I am but I don't get why people think that just because they can't see something, then nothing it wrong with you. I am so worried for my future...will my bf stay with me, can I ever hold a child if I have one, should I be talking to someone, I know a ton of questions. I am not looking for sympathy because like I said it could be worse. I am just looking for advice and what others have done or tried that have helped them. Once again ty.
  • I ty for your help and I can't wait to get this EMG done I am hoping that it will help with how to treat my condition better. Does the Cymbalta make u sleepy or have bad dreams. The alternative to pain meds I have tried so far make me fill like a zombie and or give me had dreams.
  • I may have felt a little sleepy at first starting Cymbalta but I have taken it for 2 years now and no other side effects from it. I do have vivid dreams at times but think it's more my narcotics I take but don't have more bad dreams then I did before.

    Of course with any medication there is a potential for side effects so you will need to speak to the Pharmacist and check out the website for side effects and speak with your Dr. concerning any potential side effects.

    This medication is an anti-depressant which has been accepted to be used also for Fibromyalgia patients for nerve pain and also recently approved by FDA for treating low chronic back pain as well as sciatica. It really has helped my leg pain better than Lyrica which I gained about 50lbs and swelled up all over. Amitriptyline made me so drowsy and never helped my nerve pain.

    I hope you will get some relief soon. We're here to support you through it. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Hi and welcome, Nerve pain is the hardest thing to treat. I have nerve damage from surgery for 8 years now and also deal with real bad nerve pain. So no its not in our head.

    Nerve either from compression or damage can hurt a lot that can make anyone crazy,
    Injections from pain specialists help some but dont always last long. I also tried every nerve pain medication but none work very well without puting you to sleep in my situation or just simply make you dizzy,

    If you still have compression on the nerve it has to be removed, if it was already removed its a waiting game to see if nerve will heal or not, Most dr,s say nerve heals up to 18 months. Some say longer, If it never heals you are stuck with pain pills, posible nerve stimulater if they dont feel further surgery will help a person, If the scs= nerve srimulater fails to give releif they implant a morphine pain pump in a person when worse comes to worse,

    I had both trials of the scs and pain pump but sadly that failed also, Hopefully they can help you so you wont have to have to go the the extreme of having to do all as i mentioned,

    Best wishes and good luck,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Well I have only been post op for 5 months but they are saying that with no change and nothing showing on any of the tests I have had done already another surgery wont help. I thank you for your information and experiences. I am just trying to get a hold of how bad this will be. Like I said before I am 31, healthy, not married, no kids, and worried about my quality of life. I guess the EMG will show them whats wrong? Not sure what to expect after that.
  • Hi there DYTIS....I can certainly relate to your original post. I have been suffering with severe sciatica for 1.5 years and I know how it feels to feel lost.....looking for help, answers.

    I haven't even got a proper diagnosis, so I'm dying to figure out what is wrong with me. Then at least I could work towards a proper treatment.

    I know it's easy for me to sit here and say, but what you need to try to do is count your blessings....and try to find the little things in life that bring you pleasure. Do something that makes you happy......just a little bit each day. That's what I need to do to battle the depression.


  • Welcome to spine health. I can totally relate to you and how you are feeling.

    I too had a discectomy/lami L4-S1 in July and never felt any relief at all.I have the low back/butt/leg pain. Do you also have weakness in your leg (I am thinking yes, if you are going for an emg) My lower leg and foot are numb, weak and I have partial footdrop. After a repeat mri which showed herniation and total disc collapse, I am going to have an ADR. Who knows about the nerve damage already done for myself though, only time will tell.

    Nerves do take a really long time to heal though, so there is hope for both of us. Have you considered trying Cymbalta if Lyrica didn't help?

    Hope that the pain eases for you, in the meantime, keep coming here, we "get it"

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • I sure hope something can be done to enable you to get your life back. My heart especially goes out to the young people with back and/or leg pain; it's hard for anyone to have to deal with, so it's natural for depression to occur with it. Please feel free to touch base with us any time. Being back pain sufferers ourselves, we can all relate. Where else can we find and provide as much support as we do here? This Forum can't be beat! Love 'n >:D< >:D< >:D< , Ess
  • I had my EMG done today and the Dr said that it was "normal".....so now what can I expect?
  • I am 23 years old, and I have a different issue, but the pain is always at the forefront of my mind. I take two types of muscle relaxers that don't do much, but are better than nothing. According to my MRI, my discs are fine, and I also had a normal EMG study. My xray revealed a bent spine which my chiropractor says is from an old injury. The spine surgeon I went to said that my images did not show results considered abnormal, and all he did was refer me to pain management, which I am hesitant about going to. I want to know what exactly is wrong with me, and when this will end. I find myself crying or on the verge of it everyday. Everything that used to be me isn't anymore. I can't work or be in school or play music anymore. I feel like the pain makes me bitter to people I care about. Do you ever find that in yourself?

    I don't know if you have this issue or not, but do you ever feel jealous of all your friends just for something simple like being able to run or climb a tree? I go to the park to walk to find some peace and I see people running, which was a favorite thing of mine to do, and now I can't. It's been 10 months of this pain and I am scared it wont ever go away.

    I really hope that yours comes to an end. Reading your post made me sad. It is hard for me to be hopeful even though everyone keeps telling me to be hopeful. Doesn't seem worth it after trying so many doctors. I hope you do see better days ahead.
  • Yes I fell the same as you. I get sad that I can just jump in my car and go shopping with the girls or to a movie. I know people so well true friends will always be there. Well my friends no are mostly my family cause of this. I hang out with my mom and my sister in-law. I am just worried cause I dont have control of things and I have always had a very good life and great job. I go to the doc. and friday to talk about a SCS unit and trial. I am sorry for you and I hope you get to feeling better. you can IM me anytime. do you have yahoo messenger maybe we can chat on there?

  • Good your EMG is normal. I know the nerves take about a year and a half to grow back if they were being compressed before your surgery. I hear about one mm a day they grow so slowly. I hope you will be better in time. Have you been to Physiotherapy yet? Best wishes and hope the PM Dr. will help. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • SavageSavage United StatesPosts: 5,476
    ...trying to figure out what is causing what pain.

    I think I read you had surgery in July..and it may just need to take a little more time for you to feel better.

    For myself, I have long time pain issues and depression..so antidepressants help me. I don't usually have side effects, but usually they are for short time and then body used to it.

    I hope you feel better soon.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • I understand how debilitating this pain is, the only way to function is the use of narcotic pain meds, ice pack therapies, rest, activity, and SLEEP!!! I bet my paycheck you are not getting the quality sleep u were once getting. This is almost certainly going to cause u mental anguish IMO. Don't give up, dammit, if I can't give up, neither can you!!! I've cried myself to sleep so many nights now, my wife begging me to go to the emergency dept, where they all know me by name, mainly because I am a Medic, but now more for my back and leg pain! They just go ahead and draw up my 2mg dilaudid when they see me coming. That's sad, isn't it? Good luck, and stay the course!!!
  • Sorry, but I did not read all of the posts. Just too many, but I wanted to ask if you considered having another MRI? Things to go wrong and the MRI may show other problems that may have been missed.
  • although some ignorant medical people may indirectly make you feel like that. also the nerve pain can make us insane.

    i waited too long and ended up with no disc's so after all else was exhausted i had a fusion. i fused but have failed back, for the same reasons...nerves were crushed. I did physical therapy in the water until i was able to get strong enough to get on land. did land and home for months which helps my core.

    i have gotten alot of sensation back in various areas. over 2 yrs time. i cant lay on my back, or left side and when it's real bad even with a stimulator i assume my curl aka fetal position. i use lots of pillows although much less since the stimulator. i changed my soft pillow top mattress and try to micromanage my days.

    i did sink into a deep depression and started seeing a shrink with therapy which helps. the emg being normal is good. if you have muscle damage or foot drop etc by then the nerves are screaming. foot drop can be permanent and not to be ignored if u develop any other neurological changes pls call the md. now if the foot drop stayed the same after surgery then some may come back.

    it breaks my heart to read some of the insanity people have gone through or are going through. i have been on the boards since '06 and we all get it. they changed the format and we all had to resign back up.

    pls ask for a physical therapy referral maybe start in the water, hopefully you have pain management sorry i forget if you mentioned that. but if one med doesn't help something will maybe never totally but tolerable.

    i have a stimulator and with my nerve damage this was a God send for me...good luck and keep in touch it helps alot to know and feel you are not alone. i did and wished i had a broken bone so others could "see" whats wrong. well they can't and its still awkward at times but it is what it is.

    i have read 20 people could have the same mri's and maybe 1 has symptoms so just because they see nothing either doesn't mean it's not there. i couldn't do a thing either except float in my pool and take care of hygiene/dressing.

    it's deflating and exhausting but i am still here and trying. pls feel free to pm me or anyone we all get it....
  • Well I went for my second opinion today to another neurosurgeon and he is on board with my first operating neurosurgeon that i need to have a disk replacement on fusion on my L5/S1 I have a call in for tomorrow to talk to my doc more and make the appt to have it done.
  • Hi DLynn,

    Glad to see your neurosurgeon has spotted a problem that can be sorted hopefully disc replacement and fusion will do the trick.

    I have recently had L5/S1 decompression 7 weeks ago with pedical screws and fusion for spondylolisthesis,although my disc was left in place, I still have some nerve pain including muscle twitching and spasms although it has improved a little. Glad I had it done although I am starting to get very sharp twinges when I move,I don't know why,possibly it's early days.

    If you get muscle spasms I find Baclofen helps.

    I hope you are treated soon..:))) :-)))

    All the best Des.

  • Hi Ouch2,

    You seem to have same problems as DLynn it seems,I notice in one of your posts you have partial foot drop,I have this along with the spasms down the outside of my leg to my ankle and into my foot do you find your leg or foot gets cold/twitches/or toes curl up with cramps.I cannot move my ankle up or down it just didn't work until after my surgery 7 weeks ago,now I have partial movement in my toes and a little more movement in my ankle but it has a long way to go I would say it has improved 10-20 percent.still cold though.

    Wishing you well :))) :-)))

  • TY-Des for you support.

    I will let you all know how it goes. I guess they are saying 5 to 7 days in the hospital and then just rest at home for 3 weeks. anyone have anymore info about post?
  • Hi DLynn,If you are having fusion I assume you will have hardware (metal) to stabilise that area as I did,I would say this will make things much better because it will hold the vertebra apart whilst the fusion heals,I am almost pain free in that area apart from some very sharp twinges.The nerves will probably take longer depending on how pinched they have been

    I was in hospital 6 days, feeling much better at 2 weeks, walking good but slowly at 4 weeks. my main problem in hospital was morphine after op,it makes some people very sick and constipated,then you are given laxatives which is not nice a few days later if you know what i mean.I will be taking much less morphine or even none on my next op( this time it's a disc in my neck) if I can tolerate the pain.

    I was also told it can take up to two weeks to get the general anesthetic out of your system,so no driving.

    My surgeon also said to me L5/S1 is a good operation with good outcomes before I had it done,so far I agree with him.

    Good luck Des
  • having an ADR at the L5/S1 level in less than a month. I also had a discectomy/lami the same month as you (July) I did not get any relief at all and actually got worse.

    Do you know if you are having a fusion or an ADR? I am very nervous about it, but am also excited that it will help. I am basically housebound now, in constant pain, so need to take this step.

    Do you know when your surgery will be? Hope that this brings you relief.

    Des, your symptoms mirror mine to a tee. With my partial footdrop, I can barely lift my ankle upwards, it is completely numb. It is also very cold, and sometimes feels like I have a wet sock on it. I sometimes get a cramp in it that I call the "claw" where my toes all curl under(unlike yours that go up) and I cannot straighten them out for quite some time. Even if I pull them out with my hand, they pop right back under. I believe that this is all part of the nerve damage in my case.

    Wishing you both the best!

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • DLynn - do you have a surgery date yet?
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • DLynn,

    I have been dealing with severe sciatica issues for the last year and just 8 days ago I had a L4-S1 fusion and I already feel great! Of course my back is still sore from the insicion and my left leg is pretty much numb from the knee down to the foot but I can walk with no pain and the doc said the numbness will go away in time. I just want to tell you to not listen to all the negativety in these forums because EVERYBODIES SITUATION IS DIFFERENT! All you are doing is reading but you dont know if the blog that you are reading is coming from a smoker? small person? tall person? short person? active person? inactive person? lazy person? low pain tolerence person? or hig pain tolernce person? etc. You catch my drift? I am 5 11 and way 250 lbs but I am very active! Ben in sports all life, was in the Army for 12 years, and went to the gym at least 4 times a week. People that are active and strong refuse to lose and will recovery and if you aren't then you better start! i know it hurts but I still went to the gym to fight it out. If you want to get better you will!! Good luck!
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