Confussed by possible diagnosis of ces

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Last year on may 30 I had microdiscetomy on L5 S1 where "A large piece of the disc" was removed (I put that in quoates because that was the MDs exact words he didn't understand how I had went almost 7 months before coming to see him.

At the begging of April I was helping do some yard work and a rather large tree limb knocked me to the ground.  Everyone there said they thought it had killed me because I hit the ground so hard.  Really not thinking I got up brushed myself off and went about the rest of the day.  Granted no one would let me do anything but I kinda just put it out of my mind.  

Three days later I woke up quite sore.  On my way to the bathroom that morning that all too fimliar "boiling water on the back of my leg" sensision brought tears to my eyes. I laid around for the next couple days taking it easy hoping it would just go away.  When I started feeling a weird numbness in new places I contacted my GP who told me in no uncertain terms to go back to my spinal  nero surgan.  who promply sent me for the soonest MRI I could get.  (After insurance approval that is)  

The reason I'm here is because he told me he was about 90% sure I had blown another disc from the amount of weakness in my leg, And the numbness and tingling in my ummmm my ummmm well between my legs and on my butt.  I have also been having a couple other symptoms which he couldn't rule out being ces with out a MRI.  

I'm wondering if anyone could help me some because I can't find any info on this thing.  it's like all the sites say the exact same thing and are no help.  My MD told me if I used the bathroom on myself or when 24 hours without using the bathrrom or lost all feeling in my leg to go straight to my local hospital (very small town ER) and tell them my surgan was out of the next town and have them take me by ems there.  

Here are my questions for those of you who may have had it.

Has anyone ever not had the earge to pee until it was almost too late?  ( I won't have to pee and then instead of that little twinge that says you gotta go I feel like I'm on one of those old inccontance commericals "gotta go gotta go gotta go right now"  and I feel like I"m not gonna make it to the bathroom in time)

What do they mean by it can cause constipation?  (I have been pretty regular for the last year.  even thought I"m on an array of meds I take a stool softner ever day to keep me regular but the last month it's like I'm only going like once a week if I"m lucky but it feels like I have to poop 85% of the time.  but I cant push anything out.)

What about nthe need to pee in the middle of the night? (I used to never get up now I wake up with the urge to pee and almost fall going to the bathroom because I have to rush so fast after just opening my eyes)

I have't read anything about the next couple.  Has anyone experinced Itching?  (Like the worst case of poison oak with flea bites and misquito bites you have ever felt.  I have clawed the crap out of my leg and foot to the point I have broken the skin and look like I have some sort of desise or something.  It's not bites and itch cream doesn't help at all.)

And lastly has anyone ever experienced nausua or palpations?  (I'm really thinking that one is stress and my nerves because of this but I don't know for sure) 

Any tips thoughts ideas anything will be greatly appreciated I'm scared and at my wits end.  along with the pain and strange feelings.  I'm loosing it. bad over here .

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  • Posted

    Hi Bellakrystle,

    First thing, if you have numbness in the area that you sit and problems with your bladder and bowels, you have CES, even if your surgeon says otherwise. I have had CES since Feb of 2011, caused by a neurosurgeon who then lied about everything and so did the other docs and even the physical therapist, hopefully you are not facing that because most GP's know next to nothing about CES and the symptoms of CES are different with everyone but the numbness in the saddle area is the tip off.

    Some people end up with inability to pee and move their bowels and others are totally incontinent. As irritating as the former is, it is more manageable in my opinion, but that is because I had to figure the whole thing out on my own. Also, it can affect your walking, so be careful at night. The first year after I had back surgery, I woke every 2 hours and walked to the bathroom with a walker as my right leg was totally weak and it did not hold me up and my pelvis muscles were not functioning properly and my pelvis tilted. The second year I found a reconstructive ORTHOPEDIC back surgeon who agreed to try to help me and he diagnosed me with CES CAUSED by the first surgeon. Did I sue? No, because no lawyer would take the case because the first surgeon and the PT and the neurologist who sent me to him all lied on the records that I was walking well and had no problems.

    Do not look for a CES specialist as there are not any, and most doctors will tell you that CES is rare and is never caused by surgery, I would call BS on both of those ideas.

    I have read that straight cathing yourself every 3 to 4 hours can sometimes get your bladder to wake up and start working. You need to go to a rehab place, but you need to be sent by a doctor and surgeons generally never admit to mistakes. I learned to use my stomach muscles to urinate but the straining plus the year of total constipation caused me to have stress incontinence so now I must wear a pad. The second surgery freed up nerves that the first surgeon pinched most of the numbness and horrible pain left, but my calf muscles are paralyzed (innervated by S1 and S2), so walking is difficult. I originally used canes bilaterally but last few years switched to forearm crutches, more support. My front part of both feet remain weak and unable to hold me in place so my balance is poor, hence the crutches, also use them to push myself forward. I never went to any rehab as the first surgeon discharged me as walking well and having no problems, I could not walk even 2 feet, needed a walker to support myself, could only balance on my left heel. Also, he had dropped my hemoglobin from 14 to 7, so I could not even think. If your hemoglobin drops below 9, you are transfused, I was not. I think he thought that I would go home and die since your organs begin to shut down at 6 hemoglobin.I hope that your symptoms are not that drastic, but you need to keep moving and using your muscles and go for a second opinion, a reconstructive surgeon who will see if you have any pinched nerves, and go to a university center where they are teaching surgeons how to do back surgery. Also, go to an ORTHOPEDIC BACK SURGEON. Good luck to you. I had to drive over 5 hours to find help, hopefully you live close to a good university hospital.

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    • Posted

      that's where I guess I have really amazing doctors.  My GPsaid he wasn't sure what was happening so I was sent back to the spine doc.  And the spine doc was the one who said he thought it may be ces.  His practice specializes in all things spine.  I'm just not having any luck finding any information on what to expect or what's going on in my body 

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