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Recovering from Cauda Equina Syndrome

KymBerlyKymBerly Posts: 73
edited 06/11/2012 - 8:52 AM in Upper Back Pain, Thoracic
Hiya Guys ( and Ladies ) I dropped back in looking for some info out of complete curiosity!

Well I'm not sure I had fully Wrote out my RX before and everything they did so here we go.

I had a T-12 L-1 Herniation, Severe Central Spinal Stenosis which caused Cauda Equina Syndrome. I also had several free floating pieces of disc material free floating.Which we did not know about till the surgeon was in there.

I had a HemiLaminectomy , Disectomy , Decompression, and something called Partial Medial facetctomy.Im still learning about the last one ;)

So I knew I had had quite a bit of bleeding during surgery and after, but it was not until I got my surgical report and saw all the scary terms that I found out I had scared the crap outta the surgeon lol. I guess they tried Homeostasis and it failed. So they started Cauterizing and used something called Floseal to get it under control. I was given Plasma or Blood , not sure which. I keep forgetting to ask.

Well it has been 2 months now since the Surgery and I feel horrible! Im exhausted within 4-5 Hours of waking up. I was pain free for awhile but the pain returned and everything that hurt before hurts again and a few new places too. The pain is the same type of pain, but not quite as bad. But the weakness and bladder control is back to normal to most part.

I had a new MRI last week and I am not as farm along in the recovery as they would like to see but I am recovering. The New Mri showed I have some new Damage but nothing that explains the Pain. I have some Spurring, Scmorl's Nodes , Signs of DDD and Arthritis in both the Lumbar and Thoracic Spine. a couple more Bulging and Herniated Disc's but only the L4/5 and S1/L5 are show signs of minor stenosis.

So what the heck?? Is this because of the Cauda Equina? Do I just need more time for my nerves to heal? What can I do to speed my healing rate? What will help with the Exhaustion? My Doctor is being very very conservative. I think he is worried he missed a Piece of disc material. He reviewed the MRI today so I will hear from them tomorrow, but here Iam sitting in my recliner debating on taking another Vicodin because the 10mg I took was not nearly enough!

Has anyone else here Had Cauda Equina? Was it from Trauma or developed slowly as mine did? How are you now? Anything you would be willing to share would be great.

I apologize but Im not up on all the abbreviations yet.So please help me with any surgery descriptions you have ;) I had never had a back problem before I was being pushed for the Surgery. I got a few short days to try and research but I thought It was just a herniation until the Mri Came back. Then it seemed as if everyone treated me like I was a Ticking Time Bomb!!!


  • Try not to get to caught up in the wording in the report Kym, I realise it does sound scary, but the terminology used in those reports are meant for Drs and really, it does sound worse than it is (usually). For instance, a mucous retrieval system=kleenex..so you can only imagine what some of those terms might mean. Not trying to make light of your situation, as Cauda Equina is very serious. Hopefully your Dr calls you with good news that you are on the mend.

    You are probably tired a few hrs after getting up because your body is still healing, and using a lot of energy to do that. Even as you sleep your body is still fighting back after having been through a trauma, but sleep is good for healing. On the other hand you may need vitamins or be anemic.

    As far as medication goes it would be best to discuss that with your Dr. What a lot of people may not understand is that if you take another 10mg Vicodin because you did not get enough relief from the first one, that the next time you take one and possibly forever thereafter, one will no longer be enough to manage your pain. Some people can become tolerant to the extra medication very fast, and while this may seem harmless at first, it becomes a major problem if or rather when, you run out of your medication early. Because PM is a very important issue to me I try to inform people (incase they are not aware) before this becomes a problem. Your Dr can help you manage your pain now and will understand tolerance, it's when we don't communicate this issue with our Drs that it can be problematic for all concerned.
    I hope you get good news from your Dr.!
  • God tell me about it. I opened a Medical Dictionary on the Laptop and Searched as I read. It helped a lot to know what all the words were. That way I know more about what was done, why and what the results may be.

    Like I know technically what Cauda Equina is, but to see the Surgeon say that Reflex's and Nerves all started responding much better once the herniated disc was removed was kinda cool ;) I know Goofy, but after living with this for so long and my Previous Doctor accusing me of being a Pain Pill addict, it was Gratifying to be Vindicated. Im thinking of sending the surgical report to the old Doc just sa haha in your face lol. Whats funny. Is I was not even taking pain pills and had a clean urine when she accused me of it.

    As for the PM , I really know. Its a very fine line of trying to find out what is just enough to make it bearable and what is too much and going to make them become less effective. I often cut the pills in Half and try starting with just half and then going from there but it is never enough , So Far Ive kept the Promise to myself to never take more than 10mg at a time, but often within 3 hours it has worn off and I have to lay down until I can take a new one.

    I had a friend who was Severely Addicted and Popping 30-50 Pills a day for years. So Im hyper aware of the Dangers. What I have found works for me is when I see Im beginning to get used to medications and they are not as effective, I will have the Doctor switch me to a different medication that is not quite as strong. Ill supplement alot with over the counter Motrin, and Heating pads for a week or two, then switch back to my regular Med. By then, it seems to be more effective again. Those 2 weeks are a bit more painful, but it works. It also lets me step back and see how much I'm really taking!!!
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  • I'm forever working on my tolerance and probably overly preoccupied with keeping my mgs down, because I have this fear of not being able to manage my pain. I know what you mean, it is a good feeling to have our pain validated and especially when it comes from someone we respect or admire.
    It's only been two months since your surgery and you have been through an awful lot, so I hope you are taking it easy and following your Drs orders. as far as being tired in the afternoon, or several hrs after waking up, I still think that is probably normal at this stage in your recovery, but you can always call the surgeons office and ask if you have questions. I hope you are feeling better every day.
  • I'm taking it very easy. I spend a lot of time just reading, or cooking when I want to. I walk twice a day. Just a Quarter of a Mile each time. It is enough for me to keep the spasm's at bay.

    But I can literally wake up, get my son awake and ready for school. Which means waking him up, and coming back downstairs and being a armchair captain lol.

    And then read the news, have coffee , and maybe make a few phone calls and then be ready for bed again. Its very exhausting to be exhausted.

    And Yes knowing you are managing your Own pain is very gratifying, but at the same time,I now have a very bad fear of not being taken seriously. And not getting the medication I so dearly need. Probably no sense to it , as with my History anyone would take me serious lol . But I still have it. I went 2 1/2 years and was not taken serious and was not given not one prescription from my Doctor for Pain.

    It got to the Point where people would bring me their old prescription pain pills to help me. Was that wrong? Probably but I don't think I would be alive today if they hadnt. The pain was a 9/10 in the Ends and I didnt leave my bed most days. I went through 16 motrins and 8 Tylenol's per day.

    I just realized in the same time span, I broke my shoulder, foot and tore the meniscus in my knee all in that same time frame, Haha. Im sooo Clumsy!
  • i just like to tell that my mother (who has cauda equina syndrome) is having a good progresses with electroaccupunture. have you heard of it? https://www.ncbi.nlm.nih.gov/pubmed/21984981
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