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Cauda Equina Syndrome

AnonymousUserAAnonymousUser Posts: 49,670
Hi All, I Just Joined on 11 April...

I am writing this because I did not see this particular subject posted. Maybe it has been, so please excuse me for repeating if so.

About 30 to 35 years ago I suffered terrible sciatica bouts. You all have probably been there. You are frightened to move because you will go into spasm. Just when my left leg would clear up, the sciatica would go down the right leg. I couldn't bend over for fear of spasm, and the pain was terrible. At the time they X-rayed my back and said I had bone spurs on L4-L5 and L5-S1. Arthritis is on both my maternal and fraternal side of the family.

I have lived with this, and am just very careful to not do certain things. You all know the drill, I am sure.

In October 2008 I had Bi-lateral TKR. This is total knee replacement of both knees at once. I live in southern Oregon, and this is only done on 1 in 100 people. Even though I am single with no family, my doctor went ahead and did it because I am in good condition, and physically a lot "younger" than my 61 years. I had advanced degenerative arthritis in both knees, and everything was bone-on-bone. I had gone through several years of Syn-Visc infections. Prior to that, it was cortisone. I recovered beautifully, and was only in physical therapy for 6 weeks because I had full extension and bend in both knees. I could do things the PT's could not do! I came straight home from the hospital and did not go into a recovery center. I took care of myself, and even gave the anti-clot injections into my stomach each morning.

Three months ago my left leg started to go numb and give me a lot of pain. At first I thought that maybe it was part of the recovery process, but keep in mind it was "healed" and I was off pain medication at three months. It got progressively worse, and I also started getting numbing and pain in my right leg. The "bend/flex" in both my legs decreased.

MRI's showed both legs to be fine, so that left nerve damage of some sort. They ruled out loose scar tissue via injections into my new joints. I was also getting a numbing sensation in my pelvic region, including the one area that a woman does not want to go numb! At first the doctor(s) thought it could be a pinched Peroneal nerve; heaven only knows why this would happen all of a sudden. I was given a Femoral nerve block for my five hour surgery.

I had X-rays done of my back yesterday, and they of course show L4-L5 and L5-S1 total fused together. There is no space in-between them due to arthritic damage. As you know, an X-Ray does not show nerves, so I go in for a MRI of my back next week on 16 April.

They are now worried it could be "Cauda Equina Syndrome" which is rather rare. Has anyone had this before? I will let you Google it rather than try to explain it. I have all of the symptoms, and they only developed this past three months.

If the MRI shows pinched nerves, the doctor said an operation would be in order.

Any input would be appreciated...Thanks...Kathy


  • this is what your dr thinks is happening, things will probably happen quickly. much better thn the hurry up and wait that usually happens (lol) hang in there, watch for the emergency warning signs of loss of bladder/bowel control, and keep us posted...welcome to spine health!
  • Thank you Hopeless,

    The incontinence problem is already there and I reported it to my doctor yesterday. I just did not want to go into it here!!! They are doing blood tests to make sure that no infection is in my body that could be causing the reactions. I have swelling in my "new knees" on top of everything else.

    I put off going into the doctor because I thought a lot of my problems could be due to the recent surgery. Maybe the recent surgery caused the problems???

    The pain in my left leg also goes into the foot. Very severe, especially at night.

    I guess I will find out after the MRI...Kathy
  • You can run a search on this board for CES and will find some others who have had to deal with this unfortunate problem. And, unfortunately, it is not as rare as you think.

    It is nothing to mess around with as you do not want the damage to become permanent.

    Are you seeing a spinal specialist? CES is one of only two reasons when spinal surgery is done on a emergency basis.
  • Welcome to Spine Health! I have been having CES problems too but urinary retention and am beginning to think it isn't quite as rare as experts would have us believe. I hate having my girly parts be so numb. HATE IT.

    I am not an orthopedic surgeon nor am I a neurosurgeon. But it sounds like your sciatica is back with a vengence and perhaps the rest of your body is compensating for the new knees and maybe a disc has slippped about where your back has fused. IMHO and not so expert opinion you really need a MRI asap, pdq, and stat! And to have lived with sciatica for 30 years, oh my! You are made of tough stuff!

    I have old nerve damage from a previous injury and surgery in my lumbar. So now that I am having problems again with my back it is causing CES again. For me it is scar tissue affecting my nerves so I guess it isn't quite an emergency. But yours seems like it is. I am so sorry you are going through this.
  • Thank you so much Web Mommy. I have my MRI on 16 April at 11:00 AM so assume the mystery will be solved then.

    Yes, I hear you about numbness in that certain area. LOL! I thought I had broken it!!! It is also not an easy thing to discuss with a "back" doctor, or on a public forum such as this. But if it can help someone else, then it is worth it.

    No, I do not have a spinal specialist. I have my knee surgeon and my general doctor. The talking between the two of them has delayed things. I told EVERYTHING to my knee doctor, but he did not repeaat all symptoms to my regular doctor.

    So I went through all the sordid details again on Friday with my regular doctor. He ordered immediate X-Rays, the MRI, blood tests, etc. I also joined this site because I realized I might need additional info and help.

    They should have a "CES" topic and not stick us under "Other things!" I am sorry that I did not see your posting when I listed mine.

    The numbness in my leg(s) is not coming from the sciatic nerve; I know the difference. Oh boy do I know! It is the Peroneal nerve that is pinched. It is an entirely different pain, and location, than the Sciatic nerve. More of a dull pain, and in a different area than the Sciatic nerve.

    Please take care...Kathy
  • Thank you Gwennie. When I "Googled" the topic, it listed CES as a rare and rather dangerous condition. That is the only reason I said it was rare. In a way I am glad it is not, because that means there is more information about it.

    I was under the impression that immediate surgery was necessary, and my doctor also told me surgery would be necessary if my MRI showed pinching of the nerves. It sounds as if people on this site are living with the condition.

    I personally have far too many horrible side effects and terrible leg pain to not have an operation. I am too young and active to go through this nonsense!!! I have a feeling that in some way my bi-lateral TKR contributed to this condition since I certainly did not have it before.

    My best wishes, and I will certainly post after my MRI if they don't drag me to the operating room!!! Kathy
  • Hi Kathy,
    Living with CES, comes after the surgery to decompress the nerves. If you are auto fused at L5-S1, it is possible that the nerve roots are compressed. Why are they making you wait for the MRI if they suspect CES? If they suspect it is CES, you need an emergent MRI , not to wait for the 16th to roll around.
    The longer the nerves are compressed, the less chance that the nerves will recover.
    You need to call your doctor and have them contact the MRI place to get you in sooner. Did you tell them that they suspect CES when you scheduled or did the office do the scheduling?
  • Excuse the delay; I never get a notice if I have mail. Should I get an e-mail?

    They are doing extensive blood tests beyond the norm to see if I have any infection in my blood. Due to my recent double knee replacement, I am assuming they are trying to rule out complications from that.

    I will phone my doctor now and see what is going on. The MRI was scheduled by the office, and I have no idea what they said. Sheesh...Nurse is on lunch until 2:00PM; I have to phone back.

    I will post what I find out.

  • Monday Afternoon

    I just got off the phone with my doctor's nurse. She had just talked to my doctor, and he stated since I have had the CES symptoms for three months, it was NOT a rush situation. My MRI is still on for Thursday the 16th, and will remain for that time.

    The nurse did not know that a CES diagnosis required emergency surgery, and asked where I had heard that. I told her to Google the subject. That statement did not give me confidence. She also asked who would operate on me!!! I said I did not have a clue, but Dr. Haddad told me it was certainly a less severe operation than the bi-lateral TKR I just had.

    Any suggestions? Do I need to get out of Dodge and into a big city? Any reply would be appreciated...Thanks...Kathy
  • I was diagnosed with ces on the 4 th may by m'y nuerosurgen hé explaind that it was emergancy conditionc that immediate surgery was the be
    So I agreed and had the op on the 6th may.now two weeks on the pain is still there only different .I am concerned that I might of damaged it again despite taking it very easy.how much pain is normal.exceptible?
  • I was diagnosed with ces on the 4 th may by m'y nuerosurgen hé explaind that it was emergancy conditionc that immediate surgery was the be
    So I agreed and had the op on the 6th may.now two weeks on the pain is still there only different .I am concerned that I might of damaged it again despite taking it very easy.how much pain is normal.exceptible?
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