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Recovering from Cauda Equina Syndrome

Posted , 5 users are following.

paula95630
paula95630

While on Spring break in April I started having back pain. It came on quickly and caught me off guard. It started in the middle of my back and within a few days I had electrical shocks going down my right leg and calf was tightening up. I went to GP when I got home and they gave me pain meds. After 10 days and very little relief from pain meds I made another appointment with GP. Now, I am standing all the time because sitting is unbearable. The GP insisted it was sciatica and gave me more pain meds and now a muscle relaxer as well. By April 30th my leg went numb from knee down, the pain was now only when I sat and the tightness was always there. The new numbness scared me terribly because I knew there was something awful going on to cause me to have no feeling. Driving to work for 10 minutes was getting to be unbearable for me to do. I was nearly in tears every time I drove my car. After being at work for a couple of hours 4 weeks into this I had the weird feeling my right leg was cold compared to my good leg so I went to ER. They did test on my veins and arteries, then gave me pain meds sending me home. I went straight to GP office from there because  even though they could not find something wrong I knew that all these pain meds were not working and we needed to find out why I was going numb. I was starting to get saddle blocked at this time and could not feel the ending of urination. I was also experiencing constipation which I thought was do to pain meds. My GP finally scheduled me for MRI the next morning. Results came back and they referred me to a neurosurgeon who could not see me for three weeks. I called the neurosurgeon myself and explained how I was losing feeling in saddle area and complete numbness from knee down and begged to be placed on cancelation list that I would drop anything to come at anytime. Three days later I got the call they wanted to see me. My leg has been numb now three entire weeks and when I talk with neurosurgeon he want to do immediate surgery telling me this can continue to get worse if not treated right away. I had surgery a few days later. 

Now, six weeks after surgery, I still am recovering and have pain in my right gludise Maximus and right calf painfully tight, (that varies) and no feeling from right knee down. I tire easy and I am not stable on right foot. I have nearly fallin down stairs at my house and must always use rail and lead with left foot. I have to think about walking and climbing stairs especially because sometimes my leg just doesn't want to support me. I feel broken! I love to camp and walk near streams and my balance is so far off right now it's just not fun. I am keeping my fingers crossed that this will all heal in time. 

I would love to hear from others who have had successful surgeries and how their progress has been. Good or bad. I'm going through a grieving process right now that is very hard for me. Hearing from others and how they have over come this would mean a lot.

0 likes, 5 replies

5 Replies

  • moonshiner
    moonshiner paula95630

    Posted

    Hi Paula. I totally agree it is a healing process. I was actually diagnosed with post-traumatic stress following my emergency surgery because it all happened so fast. I'm 3 years post op and I still find it a daily struggle to come to terms with living with this condition. But a positive attitude like yours will help you through no doubt. It's early stages and you are likely to make some really good recovery, but don't rush it. It took me a year from surgery for my spine to settle down, and I have heard others say the same. If your surgery was successful and they operated in time, the chances are you won't have too much damage. Are you o Facebook? If yes, search 'The Cauda Equina Syndrome Association' (red background with CESA in white writing) and put in a request to join our closed group. Hope to chat to you in the future and get you some more support. Regards, Moonshiner
  • shawng
    shawng paula95630

    Posted

    Time will help. It took a good 6 months for me to get back to "normal" or what my new normal is. I too have to come to terms with the fact that there is no more rollercoasters and other things of that sort but the alternative is much worse. I still have numbness in my leg, butt and foot which all feel weird but am getting used to it and I am now 11 months from when I had surgery. Thankfully when I had my mri within 4 hours I was in surgery and had to drive two hours to get there but was under the knife with the best doctor I could possibly have had. My husband has been very supportive so hopefully you have someone in your life that is there for you and helping you though this. It's rough but it does get easier. You will get back a lot within a few months but unforuatly for me it will never be the same as before. I wish you luck and a speedy recovery.
  • paula95630
    paula95630

    Posted

    Thanks Moonshine,

    i have fb and have submitted a request to group. I'm glad there are support groups. It really helps talking with others who have similar experiences, therefore, understand. Happy Toe Tappin Tuesday!

     

  • chrioli
    chrioli paula95630

    Posted

    Paula,

    Cry when you need to. It's healthy to do so. I have cried a lot;(. I know all too well how you feel. I had a decompressive laminectomy on the 11/11/14 cauda equina syndrome. I still have numbness, pins, needles to both lower legs but motor problems and leg and buttocks cramps, like you in the right. I feel a 30 percent improvement in my lower legs. Still retaining urine and have bowel issues. This recovery is a 2 year process so hang in there. You will feel like you can handle it one day but not the next. Be very careful though, you don't want to end up with another injury.

    Chrioli

  • Artist46259
    Artist46259 paula95630

    Posted

    Hi Paula, they should not have taken so long to diagnose your situation. The longer the delay, the less chance there is of making a good recovery. I've had CES for ten years now, and I was lucky. I lost all the sensation etc over night after three days of sciatica. I saw the doctor in the morning, who spoke to a specialist, and by the early evening I was being operated on. The surgeon missed some of the disc fragments that had entered the cauada equina part of the spinal cord, and so operated a second time. They did the best they could, and quickly, but I've still been left with paralysis down the sides of my legs, urinary and bowl retention, some sexual dysfunction, problems with walking and balance. But its important to look on the positive side. I'm lucky that I can still walk, lucky that I can still have children. And taking back some control of my situation was important. After taking a few years to accept what had happened to me, and make adjustments to my life, such as moving to a ground floor apartment (no stairs), I also took control of my diet and exercise, and now look better than I did before the injury. This definitely has an effect on how I feel about myself. I still have days when I think I'm living in hell, and hate what's happened...you just have to stay strong, hold onto whatever gives you strength.
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