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New Member - Cauda Equina Syndrome - Freshly operated on

Hello, I have been lurking for a couple of weeks and decided to join. I was just operated on about 2 weeks ago for Cauda Equina Syndrome (CES). I am a 32 yr old female with a 40 hr a week desk job. Here is my story:

For about 2 months I suffered from upper thigh pain in my right leg. I thought it was just a pulled muscle. It hurt, but not enough to go to the doctor or interfere with my daily activities.

By 8/20, 2 months later, the pain had progressed to full blown sciatica shooting down my right leg and into my foot. It was at this point that I went to my GP. She gave me ibuprofen and muscle relaxers and referred me for a MRI and gave me the name of a spine specialist. The ibuprofen and muscle relaxers did nothing for the pain, so I quit taking them.

I could not get in for a MRI for 2 weeks, so saw a chiropractor in the mean time. On 8/22 the chiropractor took xrays and confirmed I had a disk problem at L5/S1. He could not tell from the xrays if it was degenerative, slipped, etc, and said we would have to wait for the MRI. I saw him about four times over the next 2 weeks for PT. while it didn't make the sciatica go away, it was an improvement.

On 9/1 I had the MRI. I received a disk with the results. By this time, I was feeling better and postponed a follow up visit to the GP to get the results due to my mother moving out of state. I took time of work and helped my mother move for a week or so, (packing, loading the moving truck, unloading the moving truck, etc, etc. I was very careful and tried not to do anything that would stress my back. I had my SO do all the heavy lifting and such.

On 9/14 (Monday) I went back to work as usual. The sciatica had stayed about the same, annoying but tolerable. By Saturday morning, 9/21, I was on the floor rolling around in pain, sciatica, back pain, saddle anesthesia, difficulty urinating, and shooting pains in the genitals. My SO had to dress me and take me to the ER, there they basically just made sure I wasn't going to die, and sent me home. The doctor checked me for rectal tone, and gave me percocets for the pain, with instructions to follow up with the spine specialist.

I was able to see the spine specialist on Tuesday, 9/24, He pretty much immediately diagnosed me with beginning stages of cauda equina syndrome and ordered another MRI as the pain had shifted to the left leg. The MRI showed a massive herniation at L5/S1 that was pressing on the cauda equina nerves. The herniation had moved from the right to the left side. I was scheduled for surgery on Thursday, 2 days later. By the time I had surgery, I had lost strength in my left foot and was unable to stand on my tip toes, and walked with a limp.

On 9/26 I received a microdisectomy for the disk herniation on L5/S1. The paperwork I received states "Laminotomy (hemilaminectomy), with decompression of nerve root(s), including partial facetectomy, foraminotomy and/or excision of herniated intervertebral disc: 1 interspace, lumbar. I believe the doctor removed almost 30% of my disk. He said it was the largest herniation he had seen this year. I was released from the hospital the next day.

Now, 19 days later, I am doing much better but have not fully recovered. The sciatica is completely gone. I have only minor back pain, mostly it just gets tired.

I am posting because I still have some lingering symptoms and would like to know if anyone else suffers from the same thing and if I can expect to get any better, or if I will be stuck like this for the rest of my life. My remaining symptoms (TMI Warning) are:

-continued saddle anesthesia, minor on right side of body, much worse on left side, mainly from my perineum back to my lower buttocks, and about 4 inches down my left thigh.
-continued difficulty urinating, but able to void completely.
-no urge for bowel movements, I check myself everytime I go to the bathroom. When I have to go, I can manage using a combination of pushing, massaging, digital stimulation. I have not experienced any fecal incontinence.
-sexual disfunction
-while sitting/standing: pressure/pain along my butt crack and an intense knot of pressure at what I seem to think is at the tip of my tailbone behind my anus.

The last symptom is the worst and causes me the most stress. I depresses me to get up and walk or sit, because I immediately feel the pressure. Has anyone else suffered from this? Will it go away or lesson over time? I was hoping the surgery would make it go away, but it didn't. I mentioned it to the spine surgeon, but he didn't seem to concerned. I have percocet and vicodin for pain. It takes the edge off, but doesn't make it go away.

I know I am lucky compared to many other people on this board. I still have the ability to walk and can be independent. I am going back to work on Friday, 3 days from now, and am thankful for that and hope it goes okay. However, this situation is extremely depressing. i didn't expect to go through this at 32.

Thank you to everyone that has posted their story. It makes me feel better to know that I am not alone, and that their are people out there much worse than me, that are much stronger than me. Thank you.
Cauda Equina Syndrome, Incomplete
Surgery 9/26/13
L5/S1 Microdisectomy


  • I have cauda equina syndrome as well and am 9 weeks post op today.
    I STILL experience the pressure and pain in the saddle area, rectum etc...
    I was told it could take 1-2 years for healing.

    It dissapoints me also to have had all the spinal surgery procedures that I had in August and still feel this way post-op.
    But am hopeful for the future when i can sit for a long time like others in comfort
    But maybe its only wishful thinking

    I had severe stenosis and your case to me was niot as serious or for a long period of time.
    I feel you have a GREAT CHANCE of complete recovery and healing of the damaged nerves.
  • LizLiz Posts: 7,832
    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
    Here are just some of the highlights:

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    - As a bonus, Spine-Health provides these patient forums. Here is where you can meet thousands of other people who understand and can relate to your situation. You will soon become part of the Spiney family who provide comfort and the advantages of a Support System. You are now part of this family that is approximately 20,600 International members and growing daily.

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    Here are some you should take a look at:
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    All of this will help make your threads better and improve the times and quality of responses you will receive.

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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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