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L4 L5 S1 TLIF fusion tomorrow cauda equina syndrome for 2nd time!

mazza74mmazza74 Posts: 21
edited 06/11/2012 - 7:57 AM in Back Surgery and Neck Surgery
Well here it is.. Surgery lunch time tomorrow for Cauda Equina syndrome for a second time in 12 months. Wish me luck getting nervous now.
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Comments

  • You are only the second person that I have ever come across with the onset of Cauda Equina Syndrome for the second time- I'm the first.....LOL
    I just wanted to wish you good luck tomorrow for your surgery and hope that things settle down and you get a quick recovery.
    Can I ask why your surgeon waited a month before scheduling you for surgery? CES is a surgical emergency. They should have scheduled for surgery right away, since surgery should be performed within 24-48 hours.
    Sandi
  • I know! I have ranted and raved and stomped and shouted that things were getting worse but it wasn't until I actually wet myself 13th October that any of the Drs would sit up and listen - again!
  • Yeah, I know that feeling all too well. My first onset of CES was because of spine surgery, and I suppose in broad views of this time, it is also because of it, but I have some additional complications to consider before going through a third surgery at this point- my dura ( covering of the spinal nerves in the canal) is adhered to three lumbar levels, so any surgery will result in a very large dural tear, which may nor may not be able to be sutured, then there is the guarantee if I don't have surgery, I will wind up paralyzed and if I do, it may well happen then too.
    I managed to wet myself a few times, too and no one listened right after my first surgery. They told me it was because of swelling, and didn't bother to find out why I couldn't empty my bladder or bowels on my own. It is crazy making for us to be discounted when we tell them something is wrong....
    Good luck tomorrow, I hope that you find this fixes your problems and you have no further complications.
    Sandi
  • Thank you Sandi. It is so good to hear from you, but I am very angry at what you have had to put up with.I hope that whatever choice you make is the right one. Are you on CESSG forum too?
  • Hi Marie,
    Yes, I'm sandi M on there........and thank you Marie, I am hoping that if I put it off long enough, that things will move forward enough that I don't have to face paralysis, no matter which way I go. The stenosis is so severe that I only have a tiny opening of 3.4 mm if space for the lumbar nerves to pass through. Considering that the lumbar canal is supposed to be substantially wider, , I am in a mess. I also have a vertebre almost falling off the one below it and that gets worse as time goes on.
    Anyway, this wasn't supposed to be about me, I just wantee to wish you well tomorrow.
    I know how pre-surgery jitters can get to anyone facing surgery, let alone lumbar again, for CES.
    Hugs,
    Sandi :)
  • Good luck to you on surgery, hope all goes well. Sending prayers and positive vibes your way that soon this will all be a distant memory for you and you'll be on the path to recovery. Post back as soon as you are able and let us know how you are.
  • of you today Marie. Wishing you all the best. Glad that they are finally doing the surgery, a shame that you had to wait.

    We are here cheering you on through today, and recovery.

    Look forward to hearing from you when you are able.

    gentle >:D<
    Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Thinking good thoughts and prayers for you today.
    I hope you get thru everything good and your recovery goes good.
    When your able please let us know how things are going.
    all my best
    mary
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • Well had mmy 2 level fusion wednesday. According to my surgeon all went well but I did need 2 blood transfusions and my Blood pressure keepss dropping rediculously low even now. Wednesday night I have to say was the worst night of my entire life. I am no stranger to surgery with this being my 5th operation in 15 years, but recovery has definitely been the worst as it was a lengthy operation, I lost a lot of blood. My pain was so bad wednesday I never thought I would get through the pain and required a higher dose of Anaesthetic than I have ever had before.I was sick so much that they had to strip the bed/room and me twice. I had to beg for a catherter I was that desperate to pee but after an hour on a bed pan they finally allowed me to have one, just as well as I passed 1100cc in 15 mins! Yesterday was a much better day although trying to find a comfortable position in my bed is very challenging when you can no longer swivel your hips. To turn over! I forced myself to eat my evening meal. Which has done me a power of good despite making me gagg at the time. I have quickly come to realise that whilst the nurses/doctors in the NHS system are very caring. They will not give you the meds you need as. Readily unless you moan a lot. Now that I am aware of this I amm much more able to cope with the pain. The physio team managed to get me to sit up on the edge of the bed yesterday which was good until I fainted due to pain + low blood pressure. Today (friday) they managed to get me standing up and walking 10 stepss with my stick. This was very difficult as I am very weak on my left side including my arm. Again I fainted but I am so happy that I can still sort of walk! Each day should get better and better I hope. My concern now is that I have not opened my bowels since monday. I apologise if this is TMI but fellow cauda equina sufferers. Will understand what a big deal this is. I have asked and askeed for them to up my movicol dose but still only getting 1 sachet a day despite me telling them that I need 1-2 sachets everyday on a normal day. Let aloone now when I am punped full of constipating morphine and codeine. It saddens me to say that I have had to get my husband to smuggle some in from home as I really do not want to suffer a bout of fecal impaction again - that is awful.
  • Hi Marie,
    It's good to hear from you, but I'm sorry that you are still having so much pain. I remember my first night post op and the pain was so bad, all I could do was sob. :''(
    I hope that each day brings a little more improvement in your pain levels and you are able to get around without fainting.
    Trying to get up , needs to be done by rolling onto your side ( use the bed rails to hold onto), it helps to hike up the head of the bed first ( makes it easier to get from laying to sitting ;) , and don't be afraid to ask for a walker, rather than a cane. It would give you more support standing and walking.
    When are you supposed to be going home? Do you have someone to come and help you, beside your husband? I hope so.
    Hugs,
    Sandi :)))
  • Since last post I have had my Physio assessment managed to walk 10 or so steps but keep fainting when I sit or stand.Pain is more managable now that I am asking for more help more frequently. Still have weakness in my left side + catherter. Woke this morning thinking my bag had split all over the bed but no. Had started my period which was a bit embarassing. At least I had chance to have a nice shower instead of horrid bed baths. Then managed to faint in shower too! Its getting on my nerves all this fainting lark now. Still, I am very pleased that I can still stand/walk. I have no idea how long they will keep me in for. I'm guessing I need to be more mobile, not fainting and peeing and the other for myself. Before surgery my consultant did say we were looking at at least 5 days post op. Thanks for the tips they are most useful.
  • That's an awful ordeal you're going through - I'm thinking it's the anemia(?) and low blood pressure causing the fainting.

    Good on you for getting your husband to bring you in the extra Movicol.

    It is good that you can walk, but they should be managing your recovery better. With my first spine surgery, I was all but ignored during recovery, apart from the first few hours, but with the second one, they were fantastic.

    Hope each day will find you a little better, but keep asking for help from the hospital staff.

    Trish











    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • I voted for your piece, several times in fact.....it's beautiful!
    I'm glad that your fainting is getting better but don't the doctors seem to care why you are fainting? It seems to me that it is a bit unwise to have you using crutches to get around when you are so unsteady on your feet and your blood pressure is so low as to be causing you to faint.....
    I'm glad that the pain is getting better , day by day and that you are seeing some improvements. Remember, go slow and be extra cautious. I am glad that a few hints of mine are helping. I remember trying to turn was the worst. I hated being told to roll but it was the only way that I could get up and I figured out that putting up the head of the bed, made rolling so much easier- I could grab the side rails, pull myself a bit, then put the head up a bit more and then sit up. In fact, it was the only way that I could get upright.
    I wouldn't let them send you home without your being able to empty your bowels. They can give you a fleet ( enema) or warm water enema to help you go. I remember I wasn't able to empty my bowels for 10 plus days post op and when I did, I about wanted to die.......I don't want to see that for you, nor do I want to see you go home with a major blockage.
    Tell your doctor to order you a warm water/soap enema. If that doesn't help you empty your bowels, they can use something else. Go lytely or something along that line.
    Hang in there my friend, rest and take it easy.
    Sandi :)
  • I'm back. Its lucky I'm an educated person to keep an eye on what's right and wrong. Been saying for the last 3 days that I can feel stinging/burning in my Bladder. Then boom - loads of blood in my catheter yesterday! But the shocking part is I still had to ask 3 nurses before they would come and test me for a UTI. Sure enough I do have a water infection and many Hrs later I'm given antibiotics. Well that explains the up and down tepreture then! On a good note dare I say I have stopped being sick and the fainting spells are wider apart now and the physios had me walking around 30 steps with cruthes with crutches yesterday and I tackled the stairs to which really suprised me given that I felt like death warmed up on weds/thurs post surgery. So things are coming on leaps and bounds. Its so hard to not cuddle my 2 year old daughter though but at least things are moving in the right direction. Unfortunately I still haven't opened my bowels since last sunday/monday - I lose track of the days with the meds. I have told the Nurses and Drs about this many times. And that since my firt surgery for CES last Sept it has taken me the best part of a year to know that on a normal day at home I need to take 1-2 saachets of movicol to keep me going - pardon the pun!! [:))]despite me saying all this I have only been given 1 sachet a day even though I haven't been for a week. So I'm back on my smuggled in contraband movicol to get rid of the impaction - I can actually feel rocks forming across my stomach which is nasty nasty nasty. I was really pleased to find out earlier that I have been accepted to create a piece of jewellery for a new book [:D] and that a piece of jewellery I entered into an international beading competition has made the finals. I'd be delighted if everyone would vote for me as I need as many votes as poss to make it to the top slot. Thanks For the support everyone.

    Post Edited by Authority Member Liz
    Link removed as it's not permitted on the forum
    Please PM mazza74 for the link to this site
  • I am sorry that you are having quite the recovery so far , but glad to see that you are seeing some small improvements.Hope that your blood pressure rises and you don't keep fainting.

    I also wouldn't let them release you until you have the fainting completely stopped and your bowels get moving.I have also had a very hard time in that department and need to take Lax-a day (clearlac,restoralax miralax all the same thing) every day or I cannot go.Unfortunately it takes a couple of days to kick in when started.

    Have you tried using a walker? I too would worry about using crutches or cane at this point.

    You are in my thoughts and prayers, day by day it will get better.

    I sent you a pm asking for the link, would really love to vote for you.

    gentle >:D<
    Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • I, too, was thinking along the same lines as Sandi in regard to an enema. For my last surgery, they wouldn't let me go home without a bowel movement, and so I had to have an enema.

    Good suggestion from Karen about a walker - so much better than crutches. In fact, I'm very surprised that you've been given crutches. The walker needs to have wheels and brakes. I bought my own prior to surgery. The ones they had in the hospital, you had to lift up as you took a step, and to me that's pretty useless.

    I take it, the nursing staff haven't shown you how to log roll out of bed?? Follow Sandi's instructions. Absolutely essential to do this getting in and out of bed, and during recovery at home. I'm 2 years out and I still do it in the mornings when I'm a bit stiff.

    Hope tomorrow will be a better day.

    Trish











    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • well 14 days on since first going in to a+e, and im still here and desperate to go home. i have been having issues with my left arm no which is painful and icycold all the way from shoulder to finger tips. i have had a visit from a neurologist who thinks that i have some wear and tear to a disc in my neck now. they are going to give me a head and upper spine mri and then it looks like a lumbar puncture test is on the cards as they want to rule out ms next. i sincerely hope the hand issues improve as my hands are my whole life! ive been waiting on a visit from someone in urology to come and teach me to self catheterise in case i run into difficulty going for a wee at home. 3 days ive been waiting now! whilst i have had some episodes of urinary incontinence here since the fusion, i am now able to go to the loo and have not had any accidents for a few days - but i do have to get to a toilet quickly!!! im just about sick to do death of weeing into a pan now so they can measure my input and output. a few days ago i had a right panic attack as i had been averaging 3 hrs a sleep for the best part of two weeks. now ive been allowed sleeping tablets things are much better on that front but i hate being in these places at the best of times as i had a very traumatic experience in hospital when my daughter was born 3 months early 2 and half years ago. i miss her and my husband very much and so want to go home now. the drs are very interested in my medical history especially the mass of water infections i had in my early 20s,the so called 'ibs'' that i have suffered for about the same time tht is so bad i black out and role around on the floor, also the facial/jaw, neck and ear pain ive been having too. i know they are only doing their job and a thorough one at that, but i desperately want to go home now. on the plus side i am becoming more mobile as each day goes by but still have issues with left hip pain and my left foot goes hard like concrete. huge areas of my left foot are constantly numb now.
  • Have been thinking of you and wondering how you were doing.I am sure you must be sick of being in hospital and want to go home, but it is good that they are fully looking into everything(although they seem to do things slowly) and looking into the issues with your arm/neck?

    Hope that day by day you continue to feel improvement, and hope that your arm improves so that you can get back to your beading ( will be a great activity during recovery)

    Sending out a prayer for you and possitive vibes.

    gentle >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Well I was finally discharged from hospital last night once I was able to self catheterise. I have been given a pack of speedy cath to use for intermittent self catheterisation. Anyone familiar with these? The continence nurse is pleased with me and I was very surprised how easy it was to use actually.
    It was so nice to get back in my own bed and not keep having a torch shone in my face at 3am to check I am still alive!
    The pain isn't great but then thats to be expected after a multilevel fusion right?! Also the numbness and pain in the left foot and arm is a bit tiring but for 2nd time Cauda Equina Syndrome I think Ive come out of it quite well really. Only time will tell how things progress from here. Thankyou everyone for thinking of me and your messages of support. Some days websites like this are the only thing that keeps me going. I will keep you updated on my progress. Thanks again x Marie
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