Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

I am lost and don't know where to begin to deal with the pain.

sassymae28ssassymae28 Posts: 3
edited 06/11/2012 - 8:54 AM in Chronic Pain
I am new to this but here is my story and I hope someone can help lead me in the right direction. It started getting really bad about a year ago. I worked in a Toyota manufacturing company for 8 years and it got so bad I had to quit. I done a mri which showed i had degenerative disc disease, herniated disc, two pinched nerves, osteopathic, bursitis, and on and on. It is mainly in my L4-L5 and my L5-S1 and my hips. I have been going to pain management since Novemeber and that is a joke. They have gave me shots every three weeks from Novemeber till June and put me on every med you can think about. I am 5'7" and weigh 104 pounds so the weights not a issue. I can't take all the drugs cause they make me so sick. I lost 6 pounds in 2 weeks from getting sick every time I took the perkcept and other drugs they would give me. I am in severe pain every day. I have pain that stays in my hips goes through my groin down my leg all the way to my feet. My feet draw up at night. I can't sleep. I have gotten severely depressed. I have worked since i was 16 and I can't even do that now. I have been fighting for my disability and still fighting. I am at my end and don't know what else to do. Pain management wants me to stay with them but it is not helping and I think its making it worse. Where do I turn next and how do I get help? Please if anyone can help I need it. I have two kids and have to be strong for them but this is getting the best of me and I can't live the rest of my life like this. I would like to get back to work but I just don't see that happening. I can't even get my house cleaned. I appreciate any guidance.


  • to explore seeing a neurosurgeon or orthopedic surgeon. You can use this site to search for doctors who can help you or check with the nearest teaching hospital (they tend to keep current on the newest research). You may not need a fusion, but perhaps they can do something to get the compression off your disks. Are you in physical therapy? It has been a life saver for me. I realized, while talking to my physical therapist today, I have been seeing him for nearly five years. He's not only the person who keeps me going physically, he's become a good friend. Best of luck to you.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • I have looked on my insurance site and found a orthopedic surgeon. I am going to call him tomorrow and see what else can be done. I have been to the chiropractor and now in pain management but feel like I am fighting a losing battle. The pain management clinic I am going to just wants to give me shots and drug me up. I can't even ask a question without him getting defensive. It is horrible. He is overworked. I have had to sit in the office for 3 hours before and have never been seen in a hour or less. He doesn't even spend 5 minutes with you and just wants to get you out the door. I have gotten severely depressed and I have been going through this since novemeber. He will not give me any hope or tell me anything for the future the only thing he wants to do is give me injections and drugs which I can't take cause I have a weak stomach and they make me so sick I am vomiting. It is horrible. I can't live like this anymore. Thank you for the help and I am going to find another doctor and see if there is someone out there that can help me.
  • Hi Sassymae,

    I agree that its time to find a doctor. Remember something, it is YOUR body and YOUR pain, so don't be afraid to advocate for yourself. I think it is wise that youre going to see a surgeon. Also, think about considering a neurosurgeon as well. Shop around and get a 2nd opinion if need be.

    Good luck to you and please keep us posted. There are so many of us who have been there and done that, and still are!

  • More 'ditto' reply here. Get with an Orthopedic or Neurosurgeon who specialize in the spine (Fellowship trained), and see truly where you are at. Pain management is fine, but if you (as the customer) aren't feeling it is of help, time to see what else is out there. Please let us know how it goes, sorry to hear you've been going through this so long.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • HI,
    I agree with the others....you need to find a good ortho dr and have him check you out. There is no reason to continue as you are, with no results.. Pain management never worked for me...only surgery helped and then what meds you may need after that. Don't wait any longer...find a good dr who will try to help you!
    Good luck, and keep us posted!
  • I have DDD as well with a bulging disc and went to a pain management place in New Hampshire, the first thing they wanted to know is what I was looking for. I told them " I want to be human and have my life back, I am sick of the pain" so they took that as I was a "Seeker" thinking I wanted the pain pills. Hello people I didn't want the pain pill's I was sent there from my PCM and that was my next step she said. So they treated me badly while I stayed there went through all kinds of exercises in and out of the pool and at home. This did not work this made it worse. I was crying all the time and sometime got stuck in places and couldn't move, couldn't get out of the tub, off the couch, and it is sad when your son has to help you with Everything! After two month's they found out that I wasn't a "seeker" and started giving me Vicodin which still didn't help for the pain. They said there was nothing they could do for me. My insurance said I wasn't "BAD ENOUGH" YET for surgery!! I take that as I have to go through pain until the insurance company thinks i am bad enough to their standards to make the pain stop. I started seeing another doctor, She is AWESOME! She gave me Dilaudid (hydromorphone)which is awesome because you don't get the "high" from perks and I could function and it just targeted my pain. It is a high dose but it worked! And if I have to deal with the pain until i get worse then i guess this is my only option. Good luck girl, I hope you find something or someone that can help you
  • Sassy,
    Have you tried physical therapy? When my back first got bad after a car accident 8 years agao physical therapy combined with an inversion table brought me relief for a while.I had a bulging disc at L4/L5 and S1 along with mild DDD. Pain management also worked for the first few years but then was worthless. I would only get 1 or 2 days of relief.
    As far as surgery is concerned I think it should be a last resort but I am not a Doctor. That is based on my personal situation of a bad surgical outcome leaving me permanantly disabled. Make sure you research your surgeon and the proscedure he recomends and I would get multiple surgical opinions as once they do the surgery they cannot "undo" it.
    Did you work for Toyota in the U.S.? I was a field engineer for Kia Motors until my disability.
  • Thank you all. I am going to go and see what else is out there for me. It has just completely took over my life and I have to get control and take it back. I have always worked since I was 16 and it is killing me that I can't work. I am only 34 and should not been in this shape. I am so I guess I just have to deal with it and get help. Gimpy I worked for TG in Lebanon kentucky for 8 years. I was a team leader and loved my job. Japanese takes a little to get use to but they are wonderful. Having to give up that job was the worse thing I ever had to do in my life. I knew I just couldn't do it anymore. I was working 12 to 14 hours a day and mostly six to seven days a week. It was taking everything I had to get up out of the bed in the mornings. I worked in the paint department. My lungs was also collapsing all the time. I had 8 chest tubes in my left lung and 7 in my right so it got to the point of either it was my job or my life. Thank you everyone for all your support. I am hoping it will get better. I just don't understand how someone has to fight for there disability that they have worked for all their lives. I have been fighting for 2 years and it is so sad. I have came to the point where I have lost faith. I am going to turn all this around and fight for not just myself but for my kids. I am want answers and help. I am going to get it. Like I said it means so much to be able to see the support on here. I was calling suicide hotlines and I felt all alone. Reading everyone else's stories have made me feel like I am not alone and I have each one of you to think. This was the best site I could of ever came across and so fortunate. Thank you from the bottom of my heart!!
  • Good for you in being your own advocate. Most of us don't have anyone to fight for us, so we have to put up the good fight ourselves.

    I agree with all the responses above - find a good spine specialist/surgeon (ortho or neuro), hopefully fellowship-trained and only works on spines so they can effectively find the problem and treat you.

    Many times a spine clinic is a good setting because they have surgeons, physios, and PT all in the same place. Try the search for a doctor feature at the top of the page. I found mine before I searched here, but after my first surgery I searched to see if he was a member here and lo and behold, he is. This function gives you a lot of information about the docs, links, etc.

    Good luck and I'm glad you've found a place to be where we all understand how you're feeling. That's what we're all about.

    Take care and please keep us posted.
  • I went to a neurosurgeon. He ordered a MRI and after taking a look at it said ,,,i want u in the hopsital in two days( words to that effect)
    MY doctor surgeon works out of pars spin and Brain clinic. From what i gather its kinda like a resaearch place. My surgeon practises from there,. He decided i needed a surgery,. I had it twp weeks ago and am doing good, I have some pain,,, but its managable.I have pain pills that help.... and a collor to support my neck.

    See a neuro surgeon. Thats my advice. See if your doctor can give u a referrel.MY symapthys with u. Fortunatly i hadf insurance that paid a junk of this. But even if u have to pay if without insurance if surgery will solve the problem it may be what u need to do. Consoder it a invetsment in your health like paying for a house or car.

    A regular doctor can t help u much except send u to physical thereapy or write u a script. It seesm to me u really need to consult a specialist. Please dont put it off.

    IF u are a church goer.... PLease ask for your pastor for prayer. I had mine pray for me before the surgery and am thinking on calling him tonight.

    AS for your hopusework,,,is there a friend ,,,or a relative that would be willing to come over once a week and do the big stuff that u feel u cant? U might have to pay her...or him.... but being in a clean house will keep ur mind cheeered up at the least.

    Talk to us if u are down. Im new here but i see many people with kind souls that really understand this kind of suffering. We are a special breed,,, and need to stick together, There are those that really understand....

  • I recommend that in addition to seeing an ortho surgeon or neurosurgeon, address your depression issues. Pain/fatigue/depression is a vicious cycle that I have been dealing with for 10 years. There are even some therapists who specialize in people with disability issues. The psychiatrist could help with not only the depression but some of the meds available now can help certain types of pain as well as elevate mood. If you're at the place of contacting help lines, you need to address this piece. If you can stop a part of the cycle you may get relief.

    Sorry to bring one more doctor into the mix, but with all your issues have you considered seeing a rheumatologist? You may have arthritis or inflammatory issues which they might address. You're not too young to have rheumatoid issues. My daughter has seen a rheumatologist since she was 16.

    We are here for you. Feel free to PM me if you want.
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • Hello, i am new here also. Reading your post kinda
    sounds similar to my injury. Its funny how this area
    is probably the most used, and can be damaged so easily. After my first surgery i was sent to Pain Management. The surgeon sent me to pain management,
    and a physical therapy place.
    Pain Management,, my opinion is not the best choice. I also was there, and the doctors wanted me
    to stay, getting shots in the spine, and a variety
    of drugs. Which caused even more problems.
    Physical Therapy, well cost alot of money, and was
    nothing more than very mild exercise.

    My opinion, See a neuro-sergeon.
    Get new Mri's as per the sergeon's suggustion.
    Speak with him about the possable sergery's
    that my help you.
    And choose carefully,,
    Listen to the surgeons suggustions..

    And probably most important, dont be afraid
    of the surgeon's suggustions.

    Myself, I was very afraid of bone fussion, because
    i didnt fully understand what it was and how it
    would affect me and how it would restrict my
    So i chose to go with a less invasive proceddure,
    In hind site, i now wish i chose the fussion,

    Its been roughly 6 yrs now since i hurt myself.
    And although the micro-discectomy helped me alot,
    since now i have use of my leg again.
    I am still in pain,
    constant pain.
    for me its not a matter of if i will be in pain today. it is a matter of how much pain i will be in.

    Also,, IF, the surgeon suggusts a
    _Neuro-Stimulator_ be sure to do your homework,
    not only on the unit, but also on the surgeon.
    Its very important you understand what this unit
    is, and who is installing it.

    Right now, as i said, i still have pain,
    the medication helps abit, so atleast i can work.
    It is sometimes difficult to make it through the
    work day, but i manage.

    I am now looking into _-Nerve-Ablation-_.
    This is a pain management proceedure,,
    so again, you need to search for the right
    pain management group.
    But i have heard good things about this proceedure.
    And found a doctor to do the proceedure.
    I am pushing the doctor to do it for me..
    Not all pain management groups do this proceedure.
    Pain Management Groups vary in technique, efficiency,
    and quality.
    I have been to 5 differant groups.
    and was only satisfied by 2 of these groups.

  • You say in 1 part pain management is not a good idea cause all they do is injections and meds which just caused more complications. But at end of your post you back in pain management anyways and geting nerve ablasion. You say not every pain dr does this procedure. Well i have seen 5th pain dr now in last 8 years and every pain dr does this procedure.

    You say you had micro surgery but wish you had fusion instead. Well i have good news for you then because micro is the least invasive surgery to try before having the invasive fusion so you can still have fusion if you or your dr thinks it will help.

    Many people recover with pain management and pt combined and avoid surgery all togetther. Thats why its usualy done in that order. My mom was 1 of them with stenosis and never had surgery after injections meds and pt. So your post is just a litle confusing to me. But welcome,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Hi Alex,
    Yes that pain management statements might have sounded abit confusing. I am in Phila. Pa.
    and well,, my experiance over the 6 yrs with
    pain management has not been pleasant.
    But i also agree that proper pain management works very well.
    the severity of the injury i guess is the defining
    My first experiance was just after the disc ectomy,
    The head of the department was excellant.
    I got the epidural shots and work,, but just a short time,
    then i was assigned to his underling,
    she was not so good, shots did not work very well,
    and she perscribe meds, that caused an ulcer, or atleast aggrievanted an ulcer that already existed.
    When i called regarding the way i felt,
    sick, couldnt even hold down a glass of water,,
    she disregarded everything i said, and told me to
    continue the meds.
    the ulcer went peptic. so thats what i meant about
    they caused issues..
    i stopped seeing that group.
    over the yrs i tried afew others.
    acouple yrs ago, i was involved with the 4th group.
    At that time i was hearing good things about ablation, a person i meant, his wife had it done and
    she was doing well.
    But also at that same time i was involved in a neuro-stimulator. which i had installed,, and probably the worst decession i ever made..

    anyway,, i asked this group if they did ablation and they told me no..
    So after finally finding my freinds doctor,
    by calling every phone number in the book until
    i found him.{he had moved to a new location}

    So,, now i am hoping the ablation works for me,

  • I had a few ablasions and never lasted long. Few weeks at best. Had 2 nerve stim trials and nevel helped. Morpine pump pain control trial, had spinal leak for 7 days so it did not help. You say you have the scs implanted now? And why was it a big mistake?

    Ps. The ulcer sucks. I came down with ulcer at 1 point myself. That was another painfull animal by itself just to ad to the spine issue. I think the ulcer was from stress and meds and a combo of diferent things combined. For me it was right after my dad died
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • There are also numerous new pain management treatments that you can also explore. A pain pump is an alternative especially if the current medications are making you sick. A pain pump is placed in your abdomen and releases the pain medication near the nerves where you are experiencing the pain. You can get pain relief with much lower dosages than if you had to take conventional oral medications. The other thing that they've tried on people with sometimes good results is a spinal stimulator. It's a permanent implant sort of like a pace maker that is inserted into your body and has probes near the areas, i.e. nerves that cause you pain. As your body can only transmit or receive on pain signal at a time the signal that is constantly supplied by the stimulator is supposed to block the pain receptors and help alleviate the pain. Just thought I would throw this out for some of the sufferers who have had adverse effects to the pain medications.
    James Michael Carmack, B.S. JPS, MSc / MSM, R.E.H.
  • hello,,
    well, thank you for the suggustions,,
    the pump, i have not investigated at all,
    and may actually be worth checking into,,
    as for the stimulator,,
    yes i have one installed , almost two yrs now,
    i will say it sort of works on mild pain,,
    but not so much on the pain i am experiencing.
    and to be perfectly honest..
    i actually had to increase my pain meds. due to
    the pain i experience in my thorasic region
    where the wire {electrode} is tied to my spine.
    the surgeon who installed the unit wont even consider
    that the wire which runs from mid back down to my
    hip where the unit {hockey puck} is, could be
    causing pain. i feel the wire, and i feel it rubbing
    inside every time i move my arm.
    unfortunate for me, i do electronics assembly , test,
    and repair, so i am constantly moving my arms.
    i have had it re-programmed many times,
    but no real success in stimulating the nerves and
    releaving my pain.
    this is one of the reasons why i am seriously looking
    at nerve ablation.
    my freinds wife had it done about 4 yrs ago.
    and was able to return to work with no problems.
    she is a 6th grade gym teacher..


  • Hi Alex,,
    well i have had the stimulator about 2 yrs now.
    at first i thought it worked,, wishful thinking
    on my part i guess.
    ofcourse there was some pain from the surgery.
    1 month in, pain was increase at stim site.
    called surgeon, assistant said, give it time, still healing,
    2 months in, pain worsening, called surgeon,
    assistant said, still healing, dont worry,
    {keep in mind i also was feeling what i thought
    was so releif from pain in legs, but weather was
    getting warmer at that time also}
    3 months in pain getting bad in thorasic region
    were stim wire/electrode is installed..
    called surgeon, again only assistant there to answer.
    again,, told healing from such surgery takes time,
    dont worry.
    so now i am not a doctor,, and it is the spine,
    soo okay, i guess it takes time..
    4-5-6 months..
    pain increases, right arm now has restricted movement, if i extend arm, i feel a pull in the\
    mid-back were wire is..
    unit still active,, vibrating feeling in legs when
    its on,, power level at mid-range.
    now i am running it 24hrs a day.
    turning power level down so i can sleep..
    i feel a pop in my mid back, my right arm now has
    full freedom of motion,
    but,,, the unit suddenly noy functioning..
    called surgeon..
    assistant said, it is impossable for the wire to
    have slipped or moved away from spinal cord.
    surgeon calls me,, says the proceedure for this
    is to call mfg. rep. for reprogramming...
    {oohh btw, i also had the unit reprogrammed throughout the first 6 months maybe 3 or 4 times
    trying differant configurations for stimulation.}
    so back to the story..
    meet with representative.
    reprograms unit,, but had to turn up the power
    very high for me to even feel it.
    mid back pain worsening as winter comes...
    also low back and leg pain increasing..
    1++ yr in.. i started deciding the unit is not working for me,, my regular doctor said to me
    he considers it a failed surgery.
    called surgeon again..
    spoke to him after speaking to assistant.
    told him something with this is not right.
    wire moved what ever, i dont know, but it hurts.
    he got extremely defensive..
    but after we both calmed down..
    decided another reprogram,and abit longer.
    then decide to remove the system
    so for the last 6 months. i have had unit reprogramed
    acouple times, with no luck.
    i am going to let them try one final time..
    and then out it comes if they cannt make it work..

    all of these reprograms and office visits,
    cost me alot of time and a whole lot of money..
    so now i am only willing to go meet with them at
    my conveinance,, not theirs..

    soo anyway..
    i have had somewhat of a bad experiance with the
    but i also am sure that for alot of people..
    the stimulator might be the answer for them..

    just be cautious , and really check out the surgeon.

    i have a very bad idea of my surgeon.
    and what and why he suggusted the stimulator
    to me..

    but it is only an oppinion..
    nothing more than that.


  • Well the ablation is wortha try. You aint got nothing to lose i guess. As long as they know which nerve to hit. I dont think they are ever positive what nerve is realy the main cause. Its like a guessing game,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • yes,
    thats the part that kinda scares me,,
    i met this doctor afew times, and had epadoral shots
    him, which worked well.
    better than any other time i had the shots done.
    when he did it,, i would say it lasted about 3 months.
    i spoke with him about abaltion,
    he said basicly, i would be awake during the proceedure. i think they refer to it as twilight.
    he pokes around the nerves asking the person if
    this is the one or not, until he finds the one
    which is in the right area, as per what the persons
    response is..
    then sends a current through the probe and burns
    the particular nerve..
    so in my case,, he may be able to help me with
    my leg, and hip pain by burning the nerves.
    but the low back pain,, probably not, except for the
    epadoral shots..
    seems my low back pain is a compression issue..
    probably from the first surgery, and how much
    disc i lost during that proceedure from the
    original injury.
    i still havent found a doctor/surgeon to help me with
    i actually beleaved that is what the last surgeon might do for me.. but he very strongly suggusted
    the stimulator.

    such is life,,
    ya gotta take it as it comes..
  • Sorry for geting caried away on your post here. Did not mean to hijack your post. Mark made me do it lol. Hope you get some answers and feel beter Sassy and keep us updated.
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
This discussion has been closed.
Sign In or Register to comment.