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Pleas help

backpaindivabbackpaindiva Posts: 3
edited 06/11/2012 - 8:47 AM in Chronic Pain
I'm new! So bear with me as I update you all :)

I am 25 and was diagnosed with 3 herniated discs 21 months ago (L4-S2). I was hospitalized for urine retention and they did a bunch of tests (MRI, CT, blood etc) and decided I DO NOT have cauda equina. We have been trying conservative therapy since then, including massage, chrio, accupunture, hot tub, stretching 3 times a day, good diet, but nothing is working. I'm now to the point that I have totally lost the ability to urinate on my own and have to cath myself.

My family doctor has referred me to every neurosurgeon under the sun and everyone of them declines my case because "I'm too young to operate on" or "Its not a surgical case.. continue conservative therapy". We've been thru eevry drug under the sun and nothing works. The Oxycotin takes thye edge off but doesn't tak the pain away ANd I feel like a zombie whenI take it. I have a 3 year old daughter that I can play with or bend down to hug. I have no quality of life what so ever.

I have been hospitalized 4 times since the original episode for various things like a foot drop and complete loss of function of my right leg, but STILL no one will fix me.

I'm at the end of my rope and don't know what to do anymore.... I'm a pretty happy person but the thought are now getting dark and scary :(

Please help!


  • Welcome to Spine-Health. I'm glad you found us. There's so much information on this site and the members of the forum are very helpful and supportive.

    We've heard so many time, no, make that too many times, about people who are in extreme pain and spine surgeons won't do surgery or other treatments because of their young age.

    I really can't help you other than to say keep on trying to find that spine specialist that wants to help you. Having to take oxycontins on a regular basis can't be what doctors would want you to do for an extended period of time either at your age, I would think.

    Maybe there's a spine clinic you can find where there are fellowship-trained spine surgeons, either neuro or ortho, ones that only work on spines, that will help you. If all you've seen are neuros, maybe talking with some orthos would make a difference. I don't know, but it's a suggestion.

    I'm sorry to hear about your problems and really hope you can find someone that will help you as a person, not as someone that's too young for these problems.

  • the neurosurgeons under the sun you have been referrred too , and they are saying consevative treatment first , have they ordred p/t for you , as you didnt mention that .
    also did they mention going on nerve meds like lycria , that helps some folk greatly with nerve pain , just a thought , this may help.

    talk to your drs about this , may help
    good luck
  • Well - I would say that you should know that you are not alone! Second - I was told the same thing, I was 21 or so. Of course this was 15 years before CTscan and MRI every got going.

    I would continue to seek help. The fact that you have continuing issues, please keep seeking help. Maybe your Dr can send you onward to another specialist. The issue is never to give up, or break it down to just getting through today, even if today is in 1 hour increments.

    Pain is also a varied thing. Acute pain is handled well by certain classes of meds. Nerve pain is better suited to another class. In also needs to be accessed, and fiugred out, what you are living with, for issues.

    Many times - I have found help, just by keeping going for a little bit longer than I thought I should!

  • We all feel for you here! Do you have a pain management clinic in your area? They can do other things for you, like injections, as well. The thing about pain management is not to take all of your pain away, but to lessen it to tolerable level, including with the use of meds. As someone else mentioned, have you tried nerve pain meds like Lyrica, Neurontin or Cymbalta, just to name a couple? My other suggestion would be to find a teaching hospital? They tend to take on cases that others won't. Your age has nothing to do with getting the proper care you need. Don't give up, keep searching for someone who will help you. If you take a browse through the articles on this site, you will find a lot of information that will help you under the Conditions or Treatments tabs, you can even use the blue search tool at the top of the page to narrow your search. Good luck, and don't give up!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • backpaindiva,

    I'd like to add my welcome to the Spine-Health support forum. I'm glad you found us!

    I'm so sorry for the situation you find yourself in. I herniated a disc in my low back when I was your age and I didn't go to the doctor because I didn't have insurance, but more importantly, because I didn't think he would do anything at my age except to confirm that I'd hurt my back. Thirty-seven years later I've finally gotten treatment. I don't recommend waiting that long, though! Keep seeking answers and don't let these rejections deter you. You may not need surgery (which would be a good thing) but that doesn't mean that you should be dismissed out of hand. You need treatment for your pain and deserve to be evaluated by a doctor who cares. There are such doctors, you just haven't been fortunate enough to find one yet. Don't give up the search! I'm going to PM you, if that is okay.

    The troubling thing with you is this business of not being able to urinate and having to cath yourself every time. Whatever the reason for this, I'm surprised that a doctor would just let you go on this way without trying to find an answer. You're going to be very prone to urinary tract infections having to cath yourself.

    Please keep us updated, and in the meantime please keep posting and let us help you carry your burden so that you don't sink into a depression. >:D<

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • Thanks for the support everyone :)

    We have done p/t, nerve block injections and Cymbalta with no success. I live very close to the world praised London Health Sciences Centre (the best teach atmosphere in the world supposidly with the best doctors) and still no one will help (ortho OR neuro)

    I just want my life back. I want to chase my daughter and trach her to ride her pony and dance again. Right now I'd settle for not feling like I'm going to collapse

    I completely agree that my doctor ANd myself don't want me to be on opiod for extended periods of time, but that seems to be the road we are going down. I have many severe drug allergies that limit things even further, which is even more frusterating.

    I'm also getting very sick of the "you're up and around, how much pain can you REALLY be in" people are such bone heads some days. I refuse to be bed ridden, so being up and around is my only option. I sit and laty down ALOT but I refuse to do it permanently.

    Sorry to vent everyone but it just gets to you after awhile.

  • We're practically neighbours, I live in Kingston, lol. There are a couple of other spineys here from Ontario as well. Have you tried to get a referral to anyone in Toronto, would that trip be viable for you?
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Out of curiosity, have you been referred to a urologist yet? Even though urine retention can be related to back issues, it can also be totally unrelated and merely coincidental. Sorry to hear that you are having such a difficult time of it at the moment. I hope you get some sort of directionality soon.

    Welcome to Spine Health

  • Welcome to Spine Health >:D<

    What country are you in? I thought I read London and wondered if you were in the UK?

    If that is the case then you have the whole "health care" issue which is much different than what we have in the USA.

    I hope some of the UK members pitch in and give you some advice about getting treated.

    Feel better,

  • My heart truly goes out to you. When I found this forum I was thinking very dark thoughts as well. This forum saved my life and my sanity!!!

    We may not have THE answer all in one day but over time with different thoughts, ideas, opinions and such from the members here I did find a live able form of treatment :)

    Oxycotin was not a friend of mine either. Have you tried other pain meds? I assume yes as of what you said about allergies.

    PLEASE keep posting and reading here. TRUST me we won't give up on you. I posted the most depressing posts this site may have ever seen lol ;) They did not ever stop supporting me.

    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.
  • Hi

    first let me say welcome to spine-health. I agree with C about seeing a urologist and it should be first and foremost as to find out what is causing your bladder issues. I as you have retention issues. But the one thing I did when i went to the urologist is down played my spine issues so all the proper testing would be done so they wouldn't just assume it was coming off of my spine. Have they placed you on a straight cath for any extended period of time and if so for how long and what was the diagnoses with it. What type of testing have they done so far to diagnose the bladder issues? Are you using any medications to help the bladder issues and if so what medication? Is your issue in the bladder or the kidney?

    When I first showed up with the retention issues we referred me straight out to a urologist. Once all the testing was done I then went to my surgeon whom the first question was have you had a full urological work up? He needed the urological work up to understand what was going on and begin the proper testing to find the source. With that said there is no guarantee that surgery will fix a bladder issue once it starts.

    What type of caths are you using? Are you also using a fresh cath every time you cath?

    Just thought I would stop by and welcome you to spine-health.
  • Gosh I hate hearing about people so young having such horrible problems! This is the time you should be having babies, buying houses and enjoying life and love, not dealing with this shizzle. I feel for you, it can get dark and lonely and yes people can be real jerks about it. You maybe need to find a doctor and try some different pain medication until you can find a better answer. At least with that you can function part of the time, which is better than none of the time. I know myself, I have tried some extended release meds that really made me a vegetable and I don't like that at all! I want to be me, just not in pain. I was on lortab 10 4 times a day and recently switched to percocett 10 4 times a day. Of course I'd prefer them 6 times a day, but 4 is better than nothing definately!!! Try some different kinds and see what works for you. Luckily neither of these too do anything but get rid of nerve pain for me. I drive to work everyday and live part of my life at least. Meds work different on everyone. I know if my hubby takes either of those, he's wound up tighter than a large lady in a size 2 girdle :) O.K. laugh, that was funny!! I would try to get the pain contained somewhat first, then worry about finding someone to fix it if it can be fixed. You can't be miserable all the time, especially with a sweet little daughter to care for and love on! Take care - Marion
  • Another little update after seeing my Dr. yesterday afternoon. We changed my pain meds around and now I'm on Arithrotec as an NSAID, long acting oxy for the majority of the pain and I have perc's for the breakthrough. This should definately keep me more comfortable. Only bad bit is that my body has to get used to the new oxy, so I feel like a zombie today and probably will for a few weeks. Btu I'm not even going to complain because getting out of bed this AM only too 25 minutes instead of 45.

    We are also going to get a second rounds of images and tests done on my bladder (yes I've been to the urologist and we've done a bunch of text and everything came back normal. I was also on some sort of meds from him for awhile but they didn't help) to rule those out again. We are then going to gt a referral to a neurologist and get their opinion to try and get them to assist us on a referral to a spine surgeon. Still a very long road ahead, but at least the light is back at the end of the tunnel.

    Thanks again for the support all!


    p.s. I'm from Canada ;)
  • Canada rules!!! lol

    I'm glad to hear that your doc has made you more comfortable, and made more plans to find some answers. Good luck, and hang in there!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • If your in London Ontario you should get a ref at EDITED. My surgeon is one of the best in Canada. EDITED has a very good spine program. I'm having mine done on the 24th of Nov. I used to work for a sport's doctor who is the doctor for Toronto Maple Leafs, when I told him what was going on he was very happy that I was seeing this doc from EDITED. I'm not sure if he is taking anymore ref because he has a 3 year wait list. I would ask your doctor.....

    Standards agreement and posting rules.
    Naming specific institution or doctor names is not permitted in the Spine-Health.com forums. Please PM Lisa if you'd like the information that's been edited here.
    Edited by Authority Member Cath111.

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