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Help needed for CES

Posted , 5 users are following.

Dodgy59
Dodgy59

Can anyone help me please. My sister has been having horrendous problems over the last 5 weeks. It started with severe back pain, she went to see a physiotherapist who worked on her spine but with no significant improvement. Then the pain shifted from her back to her tummy area, again with horrendous pain. She described it as if someone was holding her tummy and dragging it down. Again within hours the pain shifted to her groin and pains going down her legs. The ball of her foot then became very painful and her ankle and toes went numb. She described it as if electric shocks were traveling up and down her legs. This has been going on now for weeks. Her GP is now saying that he thinks she is depressèd, in other words in all in her head. Over the last 3 days her legs have become like lead very very heavy and she is unable to walk. She has not been able to poo for 4 days and although she can pass urine its very very infrequent despite drinking bottles and bottles of water. She also describes her skin as feeling as if there are things crawling under it. Her head and nose also feels numb and she has no scence  of taste or smell. On Thursday evening she was screaming with a pain that was shooting up her vagina area and her buttocks. We ended up calling an ambulance and she went into A&E. The doctor told us he thinks it could be CES. We had never heard of it befor so obviously we googled it and was shocked that apart from the head numbness and vagina pain every other sympton she had. She was admitted onto a ward at 01.00 am Friday morning (yesterday) and was told she will be having an MRI scan around 10/11 Friday morning. We left her on the ward and came home for some much needed sleep. You can imagine our shock when we phoned the ward at 09.30 to see how she was in the night to be told she is being dishchared. I said but what about an MRI scan and fact that she could have CES. They questioned me as to where I got CES from I told them it was the doctors in A& E they practically called me a liar and said the duty registrar for that ward says she is able to go home with pain killers. I insisted that the nurse told the registrar what the A&E doctor thought and to call me back when she told hi. She called me back an hour later and said her anus contracted when he touched it. So in his opinion  She does not have CES. She is still in excruciating pain and still can't walk but they put her in an ambulance and sent her home. Can anyone please give me any advise.

0 likes, 23 replies

23 Replies

  • karen81972
    karen81972 Dodgy59

    Posted

    Hi your wife is showing alot if red flag symptoms ..it's such a long struggle to get diagnioised ... She can only keep going back to a and e ..., after months of excruciating parlaying pain .. I finally got emergency surgery after having no feeling or muscle tone in Anus.. Seems to be only way they take it seriously ... Fit me the damage was done but I'm slowly coming to terms and living my life as much as I can now .. Also keep on at gp .. District nurse etc .. Gabepenstin is a good medication if she's not on it well worth asking about ...
    • Dodgy59
      Dodgy59 karen81972

      Posted

      Thank you Karen for your reply. I think your right we will have to keep badgering the Doctors. She had a private MRI scan yesterday Monday 30/3/15 but the radiologist isn't there until tomorrow wed to read the scan. So we are waiting until tomorrow to see what it reads. Thank you
    • karen81972
      karen81972 Dodgy59

      Posted

      Very best of luck with results and yeah keep on at god every day x
    • karen81972
      karen81972 Dodgy59

      Posted

      Keep on at gp I meant just noticed I said god lol... Fingers crossed for results today
  • chrioli
    chrioli Dodgy59

    Posted

    Dodgy59

    I did not get what the MRI results were. MRI and anal tone are important for the diagnosis of CES. The reason behind anal tone is the sacral nerves that become pinched in CES innervate the area that would touch a saddle if one were on horseback (which is around the anal sphincter).Though it sounds like she might be at risk for CES by some of her symptoms, it still depends on what the MRI says. As for the sensation in her face, that would be unrelated to the back as they are completely different nerves. She could be having a reaction to the pain medication and should be watched for too few respirations ( less than 10 per minute), heavy snoring when asleep, or holding breathe while sleeping or rashes and alot of itching. Nerve compression symptoms follow specific dermatomal pathways. Since she sounds to be at risk by symptoms alone, she must follow Dr recommendations exactly. Back pain can wear you out and make you feel crazy. She needs to try and relax and allow her body to do what our bodies are designed to do, heal. Best wishes, take her back to ER if symptoms worsen or if you just need to get another opinion. Watch for bladder changes, stop and start of urine flow, frequency, heavy feeling in lower abdomin or not peeing at all or incontinence. Wishes for a full recovery.

    • Dodgy59
      Dodgy59 chrioli

      Posted

      Thank you chrioli for your advice. You are right we will only know from the. MRI scan results. Fingers crossed it isn't CES as all the poor people that have it are going through some horrendous symptons and pain. Will post the results tomorrow. Than you
  • keith94082
    keith94082 Dodgy59

    Posted

    I have vast knowledge on ces write it all down in case she ends up with damage that can't be repaired. And she takes legal action . U can win I was not treated in time I ended up with urgent back surgery but my nerves to the lower half were left damage. Because they were left compressed to long. I have right leg weakness I still have all the pains ur sister as I have strong pain relief. I have a colostomy and urstomy bags. I had my bladder removed and I have had 2 major operation all because I was left. Now ur sister needs a miracle scan with contrast dye injected. I think she is more like to have ces. She as alot owarn signs just persist with it. I can't understand ur hospitals thinking. Please keep going if she is left with damage sue them if she as house insurance u may find cover it is in their. I had 50000 cover that was used up so I went on no Wi no fee. Mine took 5 years then I settled out of court. It was a massive amount which as help me be more comfortable in a new house. No worries in future. I would give anything to have my own life back. I read on here how people àre sent away. They must not stay untreated. Keith
    • chrioli
      chrioli keith94082

      Posted

      Keith,

      I have CES also since the end of September 2014. I was ignored for 41 days so have bowel and bladder issues and lower leg weakness but I still have numbness, shocks, and tingling and feeling of heat. I'm wondering if they did an EMG on your legs and what the results were? They keep doing that on me but I've heard EMG has it's limits. I think they are trying to pin my symptoms on something else. Also, I am wondering why they removed your bladder? How long have you had CES and what was the cause. It seems like the only information out there is about early on with CES. Hardly any info about what living with this is like.

      I'm a nurse, injured at work.

      Thanks.

    • Dodgy59
      Dodgy59 keith94082

      Posted

      Hi Keith I'm so so sorry to hear that you and Chrioli are having so many problems. Well the much awaited scan results came in today. The surgeons secretary that orderd the scan phoned us today and said that the scan doesn't show a lot but the consultant would like another MRI scan done on the thoracic spine. I asked her why and she said because he had the images of the brain and top of the spine and the lumbar area but not the middle..... We are now wondering what on earth is going on as my sister had a full body scan so why would the machine only scan the top and bottom and not the middle...? Does anyone have any answers to that one. So another week gone by with no answers and still a lot of pain. She is due for the next scan next Wednesday 9/4/15 Keith is the middle thoracic the bit that shows CES ? Just wondering if that is what he is looking for?
    • chrioli
      chrioli Dodgy59

      Posted

      Dodgy

      It sounds like he is just doing a very thorough look at what might be going on. Your sister is having alot of symptoms that need to be looked at. It is my guess they want to rule out other conditions. Im glad they are being thorough! How is your sister doing today? Keeping her in my prayers that they find out what is going on and she has a full recovery. Be sure to let us know what is happening.

    • Dodgy59
      Dodgy59 chrioli

      Posted

      Chrioli 

      thank you she is still experiencing pain but can cope if she takes the tramadol every 3 and a half hours instead of every 4. I know this is wrong but she says it's either that or she will take her own life as she can't cope anymore. Today she has new symptons both her feet and shins have doubled in size. She has never suffered with swollen feet before. She said she also is getting a wavey feeling going from side to side across her back. She is passing water but only about once a day.

    • keith94082
      keith94082 Dodgy59

      Posted

      I never heard of swollen feet that caused by bad circulation. I think their is more to it the belly pain and swollen first are not the 1st thing for symptoms of ces. She must get seen soon. Wish I was more help
    • keith94082
      keith94082

      Posted

      Feet not. First sorry lol
    • chrioli
      chrioli Dodgy59

      Posted

      Oh Man! Poor girl. Does the Dr know about the swelling? That is a change in her symptoms and she should get this checked out asap. Also normal kidney function should produce about a liter of urine in 24 hours. Dodgy it sounds like it is time to take her back to the ER. Im getting worried for her. 
    • keith94082
      keith94082 chrioli

      Posted

      My bladder was left in when they done the ileal conduit urstomy. But the bladder at to be removed it went septic after 6 months. I had every type of neurological test I had my own team. A good neuro surgeon. Orthopaedic surgeons don't like operating. My operation was on the 6.8.08 I presented on the 1st my gp was great. I was seeing him about another matter. He reconsider I was having problem he tried to get me straight into kings neurological unit but I at to go to my local hospital after 4.5 hours I was sent home the doctor said I was trying to que jump he said a few other nasty things any I got a call from the gp I posted a note saying what happen . Any a lot happen I was admitted on the Monday left till late Tuesday afternoon. For the mri scan the on call neuro doctor see my scan a ambulance was sent I was whip out of my bed to kings straight into surgery. I understand I had complete compression of the lower back the surgeon said it was a mess. I have mobility problems. I still have leg and back pain lot of different feeling in my legs. I have had a massive hernia removed the on the 12th of march this year I had a major operation on my scar it had stuck to my stomach muscles. I had mesh to full the gap I have a massive scar my belly button as gone. I had over 50 staples they were taken out last Thursday I am in pain sore my wife as at to put on butterfly stitch as the scar bleeds. I would not had any of this if it was not for that hospital I also sued a urology doctor at the benzene hospital in kent . But the hospital face court the settled out of court in feb13 I am asking my solicitor if I can put in a claim for these last 2 operation. I am getting worse my back is in a mess but unless u go into complete compression. Like I did then they should operate. I have established Cauda equine syndrome. I hate being like this pain pain the compression as been relieved but the pain gets worse.i had a good job in the mod. I miss my old life so much but I won't give in. Getting the right pain relief. Help dull the pains the problem I have most my right leg goes died without warning I had 2 bad full the one down the stairs put me in hospital on my back for 6 week I had a lot of fluid on the spine an got a infection. It took week to get me up and walking. I feel for all these people I have been told I have had the worse outcome 2 stomas 2 operation that would never had been need mobility issues. I won't go into a wheel chair and get fat I will keep on my own 2 feet. I have mri scans that show disc bulges I was involved in a car accident not my fault. End up I kings they done a scan I did not see those results but more examinations. I had a private scan and the doctor who was doing my claim report wrote. That I need to see a neuro surgeon as I had problems all up the spin. I did see a neuro surgeon. He was in the team but did not do the operation. He just said it's not compressed carry on. So if I do have compression again I will sued him. These people don't do many non urgent operation. That's why their so many suffers.when I was in hospital I never spoke to people who had non urgent. I could go on but nothing will change just get the best pain relief save up about 8 grand get the disc which are mostly the cause. The catch the spinal could not all the time. But u get long term pin and needles water running down the legs . My one hate is the feeling of walking on Peebles that not nice the pain like when u bang ur funny bone that feeling get that sometimes that puts me in bed.. I have no feeling round my are or willy area . While I have been typing this my right leg as massive pins and needles and my bum is tingling.the feet are burning. Any way sorry for the spelling mistakes and my English. Lol night all
    • chrioli
      chrioli keith94082

      Posted

      Oh man! You have been through so much. I'm only 4 months since surgery which was a central paracentral herniation with a mass effect and getting a repeat scan in 3 weeks to see why so many symptoms still. My buttocks and legs goes almost completely numb!!. And have all the other stuff of CES. But after your story I'm just amazed. I hope it settles down now and you get a break from the constant pain. . Did you have surgery through the abdominal which is why you r stomach was stuck to your scar? I am scared to death I will need surgery again! Scared senseless (keep us posted on your progress. I really will pray for you. Thanks for your reply
    • keith94082
      keith94082 chrioli

      Posted

      No. I had back surgery in through the back. When they done the urstomy

      They cut me up the front. Then when they remove the bladder 6 months later that was up the front using the same scar it just got a bit longer. Then when I had the large hernia they used the same scar again. Then my belly started to get so tight .I got referee. Back after a lot of mix ups I see the right surgeon. He thought they were incisional hernias but it became far more he at to cut onto my stomach muscles as the scar tissue had attached itself to it. The risk were great for infection. The scar is very long goes from my public bone up to diagram. The belt as mesh to feel the gap I have a new scar lost my belly button. I just hate it if the ces compression had been seen earlier and I had the hope within 2 days I might. Have been alot better then I am. So I feel. For u all work on getting the right pain relief with the least amount of different tablet. Thanks u all for listen to my moan . If any of u live in kent let me know

    • Dodgy59
      Dodgy59 keith94082

      Posted

      Oh Keith you have certainly gone through the mill. Thank goodness for this site that at least you can offer help and encouragement to other sufferers and receive a bit of TLC from other CES sufferers.

      my sister went to the Dr's today about the fluid retention to her feet, he put her on fruisimide and now she can pee for England lol hasn't made a lot of difference yet to her feet but it is only day one. It will be interesting to see what her scan next Wednesday shows though. Keep smiling Keith I know it's hard. X

    • chrioli
      chrioli Dodgy59

      Posted

      Dodgy,

      Keep a diary of what is happening. Changes in symptoms etc. It might prove helpful in that this could be a complicated case to diagnose and could be of help should you need it legally. Im wondering if they said why she has swelling as its not normal or insignificant. Hang in there! Thanks for letting us know.

      Warmly,

      Chrioli

    • karen81972
      karen81972 keith94082

      Posted

      Hi Keith how are you keeping .. Are you recovering well ?? Xx wishing you a very happy Easter xx
    • keith94082
      keith94082 karen81972

      Posted

      Thanks Karen and u to. I have a few problems if the don't improve I will need medical action.
    • karen81972
      karen81972 keith94082

      Posted

      Awww I'm sorry to hear that .. You must be so sick of it all.. Just awful really it is ... Sending you lots of stength and wishing you could feel much better x
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