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L5/S1 Excricuating and so frustrated!

shaesshae Posts: 7
I had an MRI mid April that revealed a central herniation L5/S1. Ortho said that I was not a surgical candidate and referred me to pain management specialist.

Within the past 2 months, my symptoms have become SO SEVERE that I am completely bedridden, and can only walk the 15 yards to bathroom with walker or two canes. Cannot stand or sit upright. The pain is beyond excruciating.

Had called original ortho for new appt and gave list of new symptoms, and doc totally blew me off. Said I was not operable based on last appointment, and did not even take the fact that I am now totally disabled into account. Obviously, something has changed, and gotten worse...why would he blow me off to the point of refusing to even see me?

He said that if the pain mgmt doc wanted to order a new MRI, I'd have to go thru him.

It is hard enough being in this much pain without it being this difficult to even recieve any sort of care whatsoever.

Just needed a place to vent.


  • Hi Shae,

    Perhaps a new MRI is in order as well as a new surgeon! Its been 6 months since your last one and with worsening symptoms, its sounds like something else might have happened. Are you currently with a pain management doc? What treatments are you receiving? Why did your ortho say you weren't a surgery cadidate?

    Its so important nowadays to advocate for yourself & your needs, its easy to fall between the cracks.

  • :D
    Oh, I so understand how miserable you are right now. I feel for you and certainly hope you can get your pain management doctor to assist in relieving your current situation.

    Ortho's are not the "touchy-feely" type of docs -- found that out from my own experience with them.

    First, let me ask you if you are currently under the care of a pain management doctor? And, if so, what meds does he have you on to control your pain. Have you been sent to physical therapy?

    I have L4/L5 bulging disc and am not a surgery candidate. I had 3 epidurals, prednisone, lyrica, tramadol, oxycodone -- went to chiropractor and masseuse -- even lost my job in may do to being out so often due to pain. My pain started in October of 08 and finally subsided this summer. I'm still on the lyrica and tramadol for maintenance.

    I was never to the point you are that you can barely walk but was in halacious pain. Please try a second ortho -- a lot of people on this site have had discograms in addition to MRI's in order to find issues that did not show on an MRI.

    Hang in there and I'm sure you'll get to the bottom of this issue. ICE is your friend right now.

    Take care,

  • That's crazy! Get busy and find a fellowship-trained spinal specialist that will see you. This will be either an orthopedical spinal surgeon or a neurosurgeon who has the highest level of education and training and who devotes his practice to issues of the back and neck

    In consulting with 12 spinal specialists, only one required a referral. I was able to just call the office and make an appointment...my city cannot be unique in this!

    Perhaps you are not a candidate for surgery, although I cannot think why that would be...but there are other treatments and procedures that can be done to help with you issue.

    Don't give up. Now is the time to get busy and keep hunting till you find a spinal specialist that can help you.

    Please come here to find support and answers to your questions, or for listeners for your vents!

  • That is just unbelievable the response you received from your ortho. I have found that most orthos really do not want to go the surgery route unless obvious while Neurosurgeons are pretty fast to go to the knife.

    You said you have seen a PM. What have they done? ESI yet? I have an L4-L5 and told I could not have surgery but I did get to the cane point and than had w esi and plenty of PT. What type of PT have you done? I am sure the ortho gave you meds and PT, they always do. What meds are you on and how often did you go to PT?

    I also want to tell you this site is a gold mine of info and friends. More than your docs.

    Did you still work? What kind of job? Symptoms more form sitting, walking or sleeping?

    Also find a new ortho...go back to your GP and tell that person your experience and you need a second and third option for docs...hopefully a spinal orthopedist.

    Time for you to stop worrying about this bad apple of a doc and taking control and getting a few opinions. I have been to 6 docs so far and still not entirely happy.


    Hang in there...in August I was with a cane and through the right treatment can now walk pretty much as long as I want but while not done on the right direction.

  • Hi Shae,

    I'm so sorry you're in so much pain; reading your story was like reading a carbon copy of mine and many others. Luckily you've found the right place to vent, to get good advice and also to read up on your symptoms.

    Mine began exactly like yours and I lost my job through it. Whoever said it's too easy to fall between the cracks / advocate for yourself, never said a truer thing! It's infuriating how much the system lets us down.

    Firstly, no matter how distasteful it is, you do have to almost make a nuisance of yourself (UK anyway!) and I'd like to bet you hate doing it. It's difficult, but when you get to the stage where people are ignoring you, or putting you down, seek other opinions.

    Try to read as much as you can about your condition. It helps to be able to walk into the doctor's office, knowing as much as possible about your problem.

    The other thing I keep meaning to remember to do myself, is write down a list of questions. When you're in so much pain and it hurts to sit/stand/walk and basically get to the doctor's office, the questions disappear from your mind when all you want to do is - not be in pain ie get home.

    Keep your chin up!

  • Hi Shae,

    This sounds like what happened to me. My doc sent me to a "specialist" who said I wasn't a candidate for surgery, even though the MRI showed nerve compression. My doctor retired, I got a new one, and requested that he send me to a new specialist. It took almost 2 years, but I finally got in to see someone, and am now scheduled for surgery on Dec. 10th. In the meantime, the herniation got worse, my pain got worse, and the nerve is more compressed - I have terrible pain as well as numbness in my leg now.
    I was off on disability for 2 years, and had to return to work because I had no other option. As a result, things have gotten worse and worse.

    It makes me really angry that this wasn't taken seriously, and that I've had to suffer so long. The longer it goes, the worse it seems to get. Apparently sometimes the herniation can heal itself, but at this point, it may not.

    I'm angry on your behalf too! There's no reason you should be suffering so long. I would say to try and find another doctor that will take you seriously! (Just may opinion) You need some help, and the people you're seeing now don't seem to want to help you. You deserve much better treatment! Please think about it...I feel for you! {{{hugs}}}

  • I'm sorry you're getting ping ponged between the two specialists. It's like they can't decide what to do for some reason.

    I suggest you get a second or third opinion- you can try another Ortho and also see a Neurosurgeon to get their take on your case. Right now you're not getting anywhere with the current situation.

    I also had a central herniation a few years ago on L4-5 and a left lateral on L5-S1. My OS decided I was a surgical candidate after conservative treatments failed, and he sent me to have standing x-rays and a ct/myelogram done. After I did those tests he was confident in his decision to proceed with a microdiscectomy.

    Before all this, it took me 3 months to get to his clinic because my family doctor dropped the ball with me and couldn't manage to send me to get an MRI either. Well, 1 month post surgery I reherniated L4-5 and my lower back pain and sciatica grew worse. The nerve pain never went away, even after I woke up from the surgery.

    I read online that central herniations are the most difficult to treat because of how it is located anatomically. The success rates seem to be lower than those which are lateral. I did go on to have a 2 level fusion on L4-S1 6 months later, and it was with a NS this time around.

    I can't tell you if surgery is the answer but I would definately get a second opinion since your current surgeon isn't being forthcoming with information and isn't recommending much of anything. But you need to find out if you are at risk for permanent nerve damage because it can happen if you take too long to have surgery to take the pressure off the nerve. This happened to me since I was delayed in getting to a specialist to be diagnosed and treated.

    Take care and please let us know how things work out for you.
  • I agree with the others that you should get another opinion. This is no way to live. I also don't know whether surgery is the right answer or not.

    I went thru 6yrs of conservative treatment and finally decided to have surgery. I had anterior (thru the belly) fusion at L5/S1. I did great for a couple of months and then had a fall about 3-4 months post op and now I am worse than before surgery.

    Have you tried any conservative treatment? That may be why the ortho is so quick to say no surgery. Either way, the condition you are in right now is now working and you need to find someone who will listen to you. It's seems to be such a slow process, especially when you are in so much pain.

    Take it easy and keep us updated. I hope you make some progress soon.
  • If you have no reflex in your ankle I understand why the NS would recommend surgery. I would think about seeing a spinal orthopedist also but if you feel that the NS is right and can no longer deal with the pain it is completely understandable.

    Did the NS do an EMG test to know you have nerve damage or just through some simple tests in the office?

    In anycase even if you have nerve damage it does not mean that it necessarily is permanent. Nerves do heal over time and the body is an amazing machine. Do not loose hope on that front.

    I am not sure if it is ok to say this stuff on this board but I would also talk to a lawyer after. While I am not a doctor and there is no definite answer but I feel if you had seen the PM sooner and had an ESI shot first and maybe some other measures done that you may be in a better situation right now. Again I am sorry for posting this if not suitable.

  • Thanks, everyone. Makes me feel a little better to know there are others out there facing similar problems (though I wouldn't wish this on ANYONE) and such kind support.

    A friend, who is an anesthesiologist, recommended a neurosurgeon and got me in to see him next day as a personal favor. This neuro was totally appalled at my ortho's behavior. Neuro is ordering new MRI for this Friday, and we discuss surgical options Monday. He says I really need the cutting. I have no reflex in my ankle, and have nerve damage. Waiting to see how bad it is.

    Ride to doc office actually made me worse...I am that fragile at this point. I expect this may result in emergency or semi-emergency surgery before all is said and done.

    My pain mgmt doc sent my to physical therapy, which really made things worse except for the massage. Meds at this point are just Vicodin and this other stuff (name escapes me right now) in valium family, used to treat RLS (which I also have) to help me sleep.

    I feel like I need to mainline morphine! I know I need better meds than this.

    Forgot to add, I am self employed but cannot work at all right now. I have trouble even brushing my teeth or dressing, so I am pretty much totally disabled for the last 2 months. Before that, I was able to work from home in odd shifts.

    Also had two epidurals. Bad reaction to 2nd one, and may have had CSF leak. I saw specialists about that and seems that if I did, it has self sealed.

    Nervous about what this MRI will show. I think I will end up with permanent damage, even with sx.
  • The new MRI shows a much more significant herniation that is actually deeply pressing into the spinal chord. It is HUGE. I go back to the neuro on Monday to discuss options. Meanwhile, symptoms get progressively worse every day. Haven't had the EMG yet, and doubt they will do this at this point. I think my condition is bordering on emergency surgery.
  • Good luck at your appt on Monday and if you have to have emergency surgery. I hope they do something soon to help alleviate the pain you are in. My thoughts and prayers are with you. Keep us posted.
  • Thank you. I had surgery on Wednesday, and am relieved of the leg pain. I still have drop foot and cannot articulate right ankle, cannot push up on ball of foot. Can do so fine on left side. Knee also feels sort of disconnected, but not to extent as foot. I expect some improvement with this but believe there will be a permanent loss of dexterity and range of motion in right foot/leg. I can live with that, so long as that excruciating pain is gone! So relieved.
  • I'm so happy you got your surgery! There was nothing like waking up in PACU and realizing that pain is GONE! Just take it easy, take your pain meds, and work on healing! :)
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