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Having Cauda Equina symptoms, but MRI says not much?

AnonymousUserAAnonymousUser Posts: 49,900
I had 4 discs damaged last August doing heavy lifting. Since then I am having increasing symptoms of bowel bladder control vs retention problems, sciatic pain, numbness, gait changes, 15 pounds of weight loss without dieting, and no appetite besides being in constant pain.
I notified my doc who said to go to the ER and have another set of MRI's done. I did so, but the radiologist said the only thing he sees in the lumbar area is facet joint damage, L4-5, disc damage L2-5, Schmerl's SP? nodulesbut only slight impingement on the cord space. I have a notable hemangioma in the T1-2 area.
I am seeing my doc again tomorrow before having a second round of 4 transforaminal injections on Sunday Dec 14th. I am getting the feeling he doesn't believe me. I am starting to think maybe I'm nuts or something! How do you get them to believe you? This MD is a really good surgeon who did my neck fusion. I really trust him, but am starting to feel the need to move on. I am also having problems with the Lortab he gave me. I started breaking out in hives, so I have had to do with Tramadol and Darvocet for pain which is like taking aspirin. I have a whole bottle of 180 tabs I have not touched because of the hives, should I take it to the office to show him I'm not some drug addict? I don't know what to do do, just need help controlling the pain so I can keep on working. The first set of shots only lasted 3 weeks! :''(
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Comments

  • Hi Pamlee,

    I find myself in a similar posion to you. I wish I could tell you that the docs have and are taking my situation seriously but they are not.

    I have slowly been experiencing bowel and bladder problems reduced anal tone and saddle parasthesia. An emergency mri showed no significant changes from the previous one.

    To cut a long story short 8 weeks down the line nerve root blocks done with minimal effect my pm doc has said I need to be seen urgently. Well quelle surprise thats what I was told 8 weeks ago.

    It seems to me that until I am completely incontinent or lose the use of my legs no one is going to believe me. This leaves me in limbo so to speak.

    I get the impression that because I am quite calm and also a nurse that they are not too sure of me. But I am going to star kicking as soon like this week, because Ido not want to end up with permanent nerve damage.

    Good luck and persevere
    Dawniee

    L5/S1 prolapse
    L4/L5 Prolapse
    Moderate bilateral foraminal stenosis
    at above levels
    Meds Lyrica 300mg
    Temgesic 400mcg
    Tramadol 50mg
    Codiene 30MG
    voltarol 100MG
  • that you are wrong.

    I read somewhere that CES can be insideous, which is a worry I have in my own mind for myself.

    I have had bladder issues but it never stays, saddle tingling / numbness, weakness, both legs went totally numb once for few minutes.

    I was urgent referred to the OS who I see now however, no-one jumped up and down and I went thro the usual steps before surgery was tried.

    I think it is important that you find a doc who does believe in your pain. Since you can't show them, like a nasty bruise, it is so hard.

    Take your pain meds, write a pain diary, list activities you find hard. There are symptom patterns that the doctors can look for. Perhaps they just don't have enough info on your case yet?
    If you don't ask the right question, you won't get the right answer! The doctors lead you in a consultation to where they want to take you. You need to make sure you tell them the other stuff too.

    Good luck.
  • i too have increasing pain, nunbness and gait changes--enuff to have me now using a walker. my pc care physician-god bless him-trusts and beleives me completely, but like you, the mri doesn't show any significant changes. so here i sit..unable to do much of anything, trying hard just not to gain any weight-much less lose it-while i wait until my next surgeon appointment (jan. 14), i fall, or i loose contol of bladder/bowel. its like watching a horse race frame by frame...it takes forever, and you are anxious to know the results.

    it is frustrating to try and understand why some mri's show every detail and others do not. but i know what i feel, and pray it is not to late when it can be seen as well.

    it is nice to finally see someone in the same shape as me--makes me realize that im not as alone here.

    thank you for your post and pm me anytime...

    dawn
  • I appreciate all your comments. I am going to give it a real shot today at my appt to see if he thinks I am a nut or not. I may still have the shots on Sunday, we'll see, then go from there if things don't improve. I am bringing my husband for moral support. I'm just so depressed about the whole thing :( . I don't take any pain meds for hours before I go so I can tell him how much pain I am in when I get there, so it is hellish trying to get through most of the day without taking anything.
    I'll let you know how it goes.
  • that can cause bowel/bladder saddle numbness probs
    Pudendal Neuralgia is one, look into it if your mri scan is good. You can have this as well as herniated disks at the same time .

    If your piraformis muscle is very tight it cause can saddle parasthesia/numbness too(but not bladder probs)
  • I've been having "leakage" It's a side effect of the epidurals. I hope they figure out what's going on Pamlee. 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
  • I saw my Surgeon last night, and we went over everything. He said he didn't think the bowel/bladder problems are because of my back issues, but he cannot rule it out at this point. He re-did some strength and co-ordination tests on me and said I definately have worsened symptoms of balance and weakness in my legs and feet. He wants me to go see a Neuro MD because MS runs in my immediate family and that can cause these symptoms also. I took in my whole bottle of Lortab (180 tabs) that I can't take to show him I'm not some drug addict. He assured me he didn't think that, so I feel better now. In years past I sometimes would not even tell my MD's that I worked in Pharmacy, I had one guy say "well I didn't need a prescription because I could just get anything I wanted"!!! :?? So far in all the places I have lived, Las Vegas is the worst for trying to find good doctors. They come and go so fast you can't establish a relationship with anyone! I havn't been to a GP for over 2 years, the last one I went to was a woman DO and I was having bad issues with hot flashes. She told me it was a mind over metter thing and I didn't need treatment, just meditation L). I finally am getting to see an Internal Med doc that a friend of mine has been seeing for a long time, she says he is really good, so there's hope. I changed insurances so I have to wait till Feb 1st to see anyone, because if I get diagnosed with cancer or MS I won't get accepted. The new insurance starts Jan 1st, but has a 30 day waiting period. This is a supplemental thing from AFLAC. But it may take a month to get referrals to a Cardiac and Neuro doc, so I made the appt for Jan 12.
    I certainly appreciate everyones comments, and I'll ask my surgeon about the Pudendal Neuralgia. Where is the piraformis muscle? Thanks!
    He put me on Lyrica since I am having too many side effects from the Lortab, so I'll be taking that plus Tramadol and the Darvocet. He also put me back on restrictions at work, but HR says I have already had 90 days light duty, so I am out of work till I get released back to full duty. I have FMLA protecting my job for several months. I am glad to be off work for a while anyway, maybe it will help some. They changed my injections till next Wednesday instead of Sunday, but he would not concede to giving me any Valium before the procedure, so It'll be hellish again as the versed did nothing last time :''( He said I had to be awake to communicate with him. Last time they had to use Sodium bicarbonate injection during the procedure. I am wondering if my heart rate was off or something. Bicarb is normally used in emergency situations to stabilize heart rate during respiratory or cardiac arrest. I had an abnormal EKG showing possible previous infarction (heart attack) that I never knew I had. Another thing I will be seing an MD about. Heart problems do not run in my family as far as I know, but I know very little about my extended relatives.
    At least for a while I will not have to deal with the embarassing problems of bowel and bladder control while working - yeah! <:P
    I hope the Lyrica helps with the pain!
  • I know this will not help anyone but it has helped me to think someone else feels the same.
    I too feel not taken seriously and I despair as there seems to be no hope they say I'm too far gone and the risks outweigh the benefits.
    I am very depressed so please at least feel you havehelped by discussing this. Anne
  • I know this will not help anyone but it has helped me to think someone else feels the same.
    I too feel not taken seriously and I despair as there seems to be no hope they say I'm too far gone and the risks outweigh the benefits.
    I am very depressed so please at least feel you havehelped by discussing this. Anne
  • Yes I know what you mean, I fight depression all the time, I'm to young to get debilitated with this condition. It's so embarrassing I could barely talk to the doc about it. When I went to the ER, there was just a PA seeig patients in the section I was in. I felt like he didn't believe me either. I keep thinking maybe I'm dreaming these symptoms, but then I have another episode, and know I'm not. Feel free to PM me any time you need to vent or have someone to talk to. >:D<
  • is a muscle in your buttocks.Do a web search for Pudendal Neuralgia There are two really good forums about it on the web. Don't think i can post the web links here so you will have to search
    Many people on these forums have had back probs and have had Pudendal Neuralgia as well.
  • I have pain in the lower back, vagina, and sit bone area. I also have leg issues, buttox issues, pain with sitting, but no bowel or bladder issues. The pudendal nerve was thrown around, but the Neuro said S1 can cause the same referral pattern. I found a Pudendal site that said L5 S1 can cause the same pain, as it can also be the other way around. I do have forminal stenosis at L5 S1, and it is severe. So far, no one says I need surgery!! I have had epidurals, and nothing helped. Does anyone else have pain in the sit bone area? I can only sit for 15 minutes at a time, once or twice a day. I did have piriformis syndrome, but now have the piriformis at 100% and still now relief. Any thoughts? They are talking Laminotomy. I also had nerve damgage at L5 S1, but it is mild? This has been going on for 1 year, and I am so burned out!! Thanks :''(
  • My second set of cortisone injections only lasted a week and a half. :( I went to see my surgeon last evening, and since all the burning and pain have returned even with the Lyrica, etc., that he can do what I assume is a Microdissectomy. It does not involve any fusion, etc. but free's up the nerves from the pressure they are constantly under. He won't do the surgery until I have an MRI of my brain and cervical spine to check for MS lesions. He is putting in a request for that to my regular insurance carrier, as my back injury is on Workman's Comp.

    Do you know if your MD performs this surgery? It sounds like it might be more appropriate than a Laminotomy, but what do I know?

    I had a lot of gait issues and bowel issues on my trip over Christmas. I finally had to buy a walking/hiking stick to help me from tripping so much.

    I too have numbness in the "saddle" area, so I know what you are going through. My doc also has kept me off work till surgery. I have to get back in a certain amount of time though to avoid getting laid off. I stand to loose a lot of retirement pay if I am forced to quit.
    How do you work now for a whole year with this pain? Usually they do surgery if it is longer than 6 months. Where do you live?
    :H
  • I have had my L5-S1 micro-discectomy on 14-Nov 2008 and I was doing great till 45 days elapsed. I was still in a bit of leg pain though but overall my condition was better.

    After this period, I started on spine strengthening exercises ( I myself asked the doc for these exercises :( ) and since then it has been a downhill progress.

    After 3 days of such exercises I felt a bit of nerves tightening and then loosening in my low back area for 5-6 seconds. From the next day, the symptoms started with loss of feeling in the bladder and bowel and then considerable loss of sensation in my legs but motor function is intact. I also have numbness in my groin region and also a bit of saddle anesthesia. My back is also numb and the back pain I feel is as if it is a distant pain ( feels like stupid of me to tell it this way !! ). There is also a lot of throbbing in my left leg.

    The repeat MRI shows no pressure on the nerve roots but a bit of swelling in the soft tissues at the L5-S1 level.

    My surgeon ( though famous ) refuses to believe me and tells me that since I still have control over bladder and bowel and that only the feeling is missing, and also since I am able to walk, its fine !! He says he will do something is any of this function is compromised !!!!!!!!!!!

    I have read a lot of material on cauda equina and all my symptoms seem relevant to it, though slowly developing. I am scared that the situation will further deteriorate.

    1) I am not able to understand how the MRI can show no pressure on the nerve roots and still I have symptoms of nerve root pressure.

    2) Can the soft tissue swelling near L5-S1 level cause such symptoms and will I regain the sensations lost in my bladder, bowel and the legs ?

    I went to a different neuro-physician and he suggested that the symptoms should slowly come down within 2 weeks and that this might have been caused by improper exercise and also the soft tissue swelling.

    Anyone having any advise or information, please let me know.

    Take Care All,
    MAK
    ----------------------------------------------
    L5-S1 micro-discectomy for large central disc prolapse on 14/11/08.
    Disc Bulge with small annular tear at L4-5 level.
  • I have similar problems

    But before you read can anyone recommend a web link to ' how to deal with serious illness'. I am in such despair / depression that on somedays I look forward to leaving the earthly body. Incidently I am still holding doen a full-time job.
    *************************************************

    Approx 3 years ago I apparently slipped, damaged or whatever to the L5 disc the pain was acute but gradually it went away with physio chriopractice treatments. I retuned to normal activity and started walking 10 miles at weekends with no problems.

    Every now and then I still get the bad sharpe pain in the lower spine but it lasts just a day or so. ( I even had a year long pain free episode )

    However, since the slipped disc I suffered impairment of
    erectile function / reduced sense in penis at the same time I damaged my back. I never mentioned this to the doctor as I was embarrased. The situation is not total, just impaired and I have had to work around the problem with some success.

    Four weeks ago I was diagnosed with sciatica in left leg with knee jerk weakness on testing ( there is no pain in the central L5 area ). The leg is painful to walk on. This is the first time i have had Sciatica ( i did not have it when i slipped the disc 3 years ago ) and without sounding dramatic, pain is not the right word to use, it is utter hell. The pain / stength is improving over the last week.

    No other symptoms, bladder, bowel seem okay, though when I originally damaged the spine, uriniry urge increased for about 2 weeks, which i told my doctor. I do not have saddle numbness or bladder problems though bowel sphincter seems less strong ( I did have an sphincotomy op 10 years ago to repair a fissure. I do not have incontinence but I find it sometimes difficult to keep gas in.

    I am really concernd that this may progress to some form of debility by way of CES. I dangerously read on the Internet about Caudia Equina but the only red flag I have is 3 years of erectile dysfunction and reduced sense in penis.

    I have seen two doctors about my concerns and they dont associate this with my current sciatica. They are adament that it is urgent if serious bowel bladder, saddle symptoms occur.

    Is this typical in a spine related problem like disc injury, I am 50 years old male but phisically fit.

    Please if you can comment I would be thankful

    tonyinhampshire
  • Possibly there is a herniated disc that is pressing on a nerve root and descending roots within the thecal sac. That is why a herniation at one level can cause symptoms at lower levels too. However, a cauda equina syndrome causes more severe and widespread symptoms and is more likely to cause permanent neurologic damage. Are you going to be able to have an MRI and see a neurosurgeon in your health plan? The pain could hopefully be lessened with an atypical analgesic, hydrocodone, or epidural blocks, or combination of the above. If not consider seeking a surgical opinion I would think. Good luck.
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