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Thread: New Cauda Equina - Need advice and encouragement

  1. #1

    New Cauda Equina - Need advice and encouragement

    Dear CC Community,

    This is my first post. I have spent the last two days reading 100's of CC posts and I am truly inspired by the courage of its members.

    I am a 45 year old male. I was diagnosed with Cauda Equina and on Oct 6th and had a bilateral L5-S1 discectomy for a massive herniation. I have already emailed Wise Young but would also like any information from individuals who have gone through some of my issues. I understand that that Cauda Equina presents uniquely on each individual but any information would be helpful. Perhaps too some SCI individuals can relate to some of my symptoms.

    History...
    I initially had a bout of intense sciatica the end of August (left leg only) pursuing conservative treatment my sciatica symptoms improved throughout September but by Mid-September I noted urination difficulties (frequent need to urinate with very poor stream) and relayed this to my family doctor and back pain clinic doctor. Both suggested it was prostitis or enlarged prostate. Subsequently I found an Urologist who ordered a lumbar MRI. The MRI showed massive herniation at L5/S1. With no urinary obstructions found the Urologist arranged for Emergency surgery that day. Unfortunately there was 3 weeks between noticing my bladder symptoms and surgery.

    I never did show saddle numbness or any other "typical" Cauda Equina symptoms except some constipation issues (need to strain). In fact by the time of my surgery most of the sciatica (leg and foot pain) had mostly gone away.

    3 weeks Post-op...
    After about 10 days of very distressing urination frequency and intense sensation with a constant need to void, my condition seems to be improving! Less frequency and better stream and reduction of the constant voiding sensation. Although some days seem to be setbacks.

    Bowel movements are still strained. Not sure if getting better or worse. I have increased my fibre. Note sure if relevant but during urination or bowel movements I get strong electrical pain in left foot.

    Sexual function is OK.

    As well... As a result of the surgery I now have new left leg and foot numbness corresponding to the S1 nerve (different to the sciatica symptoms I had previously). The Neurosurgeon said this was from nerve irritation from the surgery itself and unrelated to the Cauda Equina and sensation should return. Also lost Achilles heel strength.

    Overall the Neurosurgeon says the surgery has decompressed the nerves and now I can only wait.

    Questions...
    Bladder and Bowels. I hope to continue to see improvements. Is there a typical time frame? I have read improvements can continue for a year or more? My Urologist has me on Detrol, good idea? Anybody relate to the foot pain during a bowel movement?

    Leg, foot numbness and achilles heel. Can anyone offer advise? Is my Neurosurgeon just telling me what I want to hear? If sensation returns will it come back gradually or all at once? Time frame? Any theories on promoting recovery?

    Pain. Slight back pain. Moderate leg pain. Strong foot pain, mostly the "alive" part of my foot is suffering with muscle spasm and pain. Just taking Ibuprofen and Tylenol with little effect. Any pain relief advise? Any advise on keeping my leg and foot healthy while dealing with the S1 nerve numbness? Just started, albeit slowly, at the gym on the stationery bike and elliptical trainer to cut down on walking as too much effort on my foot seems counter productive, good idea?

    Thankyou for reading my story. Any information or advice is appreciated.

    L Kotz

  2. #2
    I don't know about you, but I would take a look at Piriformis syndrome regarding the sciatica and the bladder and bowel problems. It, the muscle, can pull the sacrum and tailbone out of whack while it is in spasm (did your buttock ever hurt?) and this in turn will irritate or compress the S2-S4 nerves. Since you've had this problem since August, you can bet you have some weak muscles by this time. I would look at your sacroiliac Joints as well for the back pain, and see about strengthening your abdominal and pelvic wall muscles. This will help to hold up your pelvis (say, what shape are you in anyway?) in front, and help to realign your left hip and tailbone. Practice keeping your hips under your pelvis by establishing a firm pelvic tilt with a proper center of gravity. Without this, a person tends to tip forward in front and allows the back end to slip up. This screws up the L5-S1 disc area and you can get mild to major sized herniations.

    I went through all and more with this problem, for way too long before I was able to fix stuff. Took a good PT to fully dx me with the SI problems and the orto doc to dx Piriformis Syndrome. Strengthen the core muscles. If you have a doctor do a rectal to check the strength of the pelvic walls, each side, you will probably find the left side is pretty mushy. To test this out a wee bit, next time you're at the urinal, (after practicing a bit) tense the buttocks, lower abs, and pull the left hip muscles up tight. You'll feel it when you've got the right ones.

  3. #3
    Lee555,
    Thanks for the reply,

    The MRI and surgey confirmed that the disk was compressing the Cauda Equina root bundle so th Piriformis wasn't a factor.

    L Kotz

  4. #4
    Quote Originally Posted by L Kotz
    Lee555,
    Thanks for the reply,

    The MRI and surgey confirmed that the disk was compressing the Cauda Equina root bundle so th Piriformis wasn't a factor.

    L Kotz
    I also had a disc herniation at S1 compressing the nerves, but it was the S2 that was causing the bowel and bladder problems for me. If you really had CE you would have much pain and saddle numbness. I had the numbness in the nether regions but fortunately only a few times when I got shocks of extreme pain down there when I manipulated my left leg in a certain way. The problem with numb muscles is you cannot tell which muscles in the groin are numb because the muscles they are really deep in the groin. The nature of the problems you're having speak of nerve compression or stretch since you're not actually having pain down there except for low back pain. This would be the SI joints. Look up Piriformis Syndrome because it can cause these problems. And many doctors don't realize when the sciatic nerve starts giving a person trouble it is also irritating the Piriformis muscle which can cause the nerves to go into a sort of shock.

    This is a case of which came first, the chicken or the egg sort of scenario, but in this case its more like, 'Which came first, the disc problem or the malfunction of the muscle.' And really, studies are starting to show that doing work on the discs in this area rarely fix the problems for long, as the dysfunction simply works its way up your spine.

  5. #5
    Lee,

    I am new at this but I believe Piriformis Syndrome can cause a numb butt and sciatic symptons running down the leg. To effect the bladder and bowels piriformis compression would need to run back up the nerve and then down the Cauda Equina which I don't think is the mechanism?

    L Kotz

  6. #6
    Lee, please don't give medical advice or try to make a diagnosis for others on this forum. CES is associated with bowel and bladder dysfunction. Piriformis Syndrome is not.

    If you have cauda equina syndrome, you need to see a physiatrist. Have you done this? Have you had an inpatient rehabilitation program?

    Have you had urodynamics? It is strongly recommended. Straining to void with a neurogenic bladder can cause problems, and you are at risk for both retention and UTIs. Detrol is rarely needed in CES as most have a flaccid bladder. Was this given based on leakage or on ultrasound and urodynamics? Is your urologist a specialist in neurologic urology? You probably also need to work with a rehabilitation nurse on a good bowel program. The lack of sexual dysfunction is rare in CES.

    CES is often associated with neuropathic pain. Drugs such as Neurontin or Lyrica are generally the first line of treatment. A physiatrist would be the best to help you with this.

    (KLD)

  7. #7
    SCI- Nurse,

    Thank you for the post. Seems like my symptoms are a bit wacky compared to other CES stories?

    I will discuss the seeing a physiatrist with my doctor and neurosurgeon. Not sure if there are many around in Vancouver? However as I am only 3 weeks after surgery I think my doctors are still hopeful I will recover as my presurgery CES was not full blown?

    My Urologist is not neurologic specialist. So far I have done 2 bladder ultrasounds and measurements for volume and flow rate. Last week at his office my "full bladder" measured approx 350 and had voided 300 at a rate of 15. My Urologist seemed pleased with this result (better results then the previous week). Seems like my bladder wants to constantly empty rather then retain. However my performance at his office seems much better than the norm, at home and not waiting in his office, I would have voided ealier due to the urge, producing less volume and flow. Does this make any sence? And no leakage. I think he put me on Detrol to see if it produced any positive change? Any other bladder meds suggested?

    Regarding a bowel pogram. I will persue this. Should I get an appointment as well with a Gastro doc?

    Regarding pain meds. Not sure if my foot pain warrats Neurontin or Lyrica. The electrical pangs are infrequent. My foot pain seems more muscle related? Although the foot seems to feel very cold at times. Leg is just numb and wihout much pain. Would Neurontin or Lyrica do anything to suppress the bladder urge sensation?

    As I am only 3 weeks out from Surgery is it too early to do PT? Still hoping my leg will cover soon enough and other sypmtons will resolve!

    Thank you,

    L Kotz

  8. #8
    Ask to have urodynamics done. This should be done for anyone with neurogenic bladder, otherwise you are treating blind without a full diagnosis. If you are carrying a high residual, you may need to do intermittent cath to keep these down and avoid UTIs, at least for now. Your urinary urgency is most likely due to incomplete emptying. Detrol only makes this worse.

    A rehab nurse would be much more help for a bowel program than a GI doctor, who usually doesn't know the rehab aspects of this.

    Ask for a referral to GF Strong/BC Rehab's outpatient SCI clinic. They have urologists, SCI physiatrists, and rehab nurses, as well as good therapists available.

    Neurontin and Lyrica are specific for neuropathic pain. They don't help with bladder urgency or leakage or control. How do you know your foot pain is muscle related and not neuropathic??

    (KLD)

  9. #9
    Quote Originally Posted by SCI-Nurse
    Lee, please don't give medical advice or try to make a diagnosis for others on this forum. CES is associated with bowel and bladder dysfunction. Piriformis Syndrome is not.

    If you have cauda equina syndrome, you need to see a physiatrist. Have you done this? Have you had an inpatient rehabilitation program?

    Have you had urodynamics? It is strongly recommended. Straining to void with a neurogenic bladder can cause problems, and you are at risk for both retention and UTIs. Detrol is rarely needed in CES as most have a flaccid bladder. Was this given based on leakage or on ultrasound and urodynamics? Is your urologist a specialist in neurologic urology? You probably also need to work with a rehabilitation nurse on a good bowel program. The lack of sexual dysfunction is rare in CES.

    CES is often associated with neuropathic pain. Drugs such as Neurontin or Lyrica are generally the first line of treatment. A physiatrist would be the best to help you with this.

    (KLD)
    Sorry if it sounded like that. However his situation was so much like mine what with the sciatica, herniation, bladder problem, etc. I just had to relate my situation.

  10. #10
    Dear SCI - Nurse

    Thank you for your follow up post.

    My urologist has been wonderful. I am to come in anytime without an appoinment. I have dropped in 3 times now and after voiding the ultasound shows a residual volume under 50. He no longer worries about high residual. Anyways I will bring up all your points with him. It seems like my bladder just wants to stay close to empty. However I am encouraged that each day the frequency is dropping and volume is getting better.

    I have an appoinment with my family doctor on Wednesday I will ask him for a referrel to GF Strong, although looking at their website I wonder if I am enough of a case for them to take on? I like they have all the expertise under one roof.

    Will my family doctor have enough confidence or knowledge to perscibe Neurontin or Lyrica? I am sure I am his only CES paitient. I was thinking mostly muscle pain as my foot is better in the morning? But I think the neuropathic pain may just be adding greatly to the muscle pain. Re Neurontin or Lyica, I partly wanted to avoid these drugs so not to experince any of their side effects, although maybe its better to help me get through the day and better promote my healing? Your thoughts?

    Thank you again,

    L Kotz

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