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post op l5-s1 genital/groin numbness...help!!!

waynuswwaynus Posts: 46
Dear All,

Bit of a dodgy subject to talk about but im going mad with the pain im suffering post op from a huge L5-S1 disectomy and decompression (left laminectomy) back in April 09. I had a caudial epidural and the docs reckon the disc totally herniated and i was not operated on for a week!!! I have since come off morphine and co-codomol and suffering nothing but pain.

Im getting pains in the groin and numbness in the left side of the scrotum and along the penis and left buttock is completly numb and down the rear of the leg. Regarding bladder funtion im not getting that strong urge to go to the toilet when im full and even when i do go i cannot feel alot...plus sexual dysfunction and feeling.

I have also been getting muscle spasms and pains in both legs and was admitted to hospital for a check up. I had an mri but it showed up no acute changes. The Ortho surgeon said it is sciatica but this does not feel like this to me and feels the nerves will settle down in due course and with yes you guessed it pain killers.

I feel like im being thobbed off by the docs but i feel i may have some possible nerve damage, has anyone else experienced this problems????

Any help and advice would be great

Kind regards,



  • i can imagine your concern.
    you have only been 3 months out of surgery. you have two good things going for you...a good mri and improved urinary function.
    for up to a year you can get weird sensations. they are caused by the surgery but dont necessarily mean nerve damage. i am afraid you'll have to wait it out. i had trouble with tingling and numbness in my stomach after lumbar surgery. i didnt have those troubles before surgery. but all that stuff went away. i think if it was my penis i would have been more concerned. i hope it will all go away.
  • I don't know what the word "thobbed" means...but I get the drift of your post. It seems like in almost every case after surgery, the surgeon tells the patient that the "nerves will settle down." In some cases, that is true...but I think in most cases, they simply do not know what else to say.

    If I were you, I would also be concerned and a bit unwilling to just sit around and wait and see what happens.

    It is not common, but in the case of a herniated disc, sometimes all the pieces are not removed at the time of surgery and the little pieces do not always show up on the MRI. Someone on the board had that problem. When the surgeon went back in, he found a piece of disc fragment pushing into the nerve. Unfortunately I can't remember who that was...sorry. Anyway, the fragment was removed, and the person recovered and is not pretty much pain-free.

    Not to alarm you, but please look through the information here: http://www.caudaequina.org/definition.html
  • Ya your not alone, same general syptoms, but not as many, dang insurance wont pay for me to see a specialist. does it happen after sitting for a period? and get worse real quick?
    good luck too ya and dont forget to mention it to your doc.
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • I had decompression surgery 5 months ago for spinal stenosis on L3/4 L4/5 and L5/S1 Bilaterally. The doc forgot to tell me that there could be post surgical problems due to the fact that nerves are moved and replaced during the procedure. In the event I was firstly incontinent for two days post op and after that I could not pass water at all. I was catheterized with a Foley Catheter for two weeks. Following that I tested again to see if I could pass water by having my bladder filled through the catheter. That did not work either and I had to self catheter for the next month assisted by Flomax capsules. It took a month for me to get back to being able to empty my bladder on my own with the aid of a now permanent medication (Flomax). The urologist that I went to see told me that it is very common for people who have lower lumbar surgery to suffer in this way and in this general area due the muscle disturbance. In fact he has many patients who have a whole range of post op problems in this general area
    and it seems that there is no fixed time for a full recovery. If you are in any doubt perhaps you should see a Urologist as they cover the entire area that you are referring to and I am sure that will help you.

    Good Luck
    John B
  • Hi Pete,

    Many thanks for taking the time to write.

    Your spot on about the weird sensations especially in the stomach, funny enough ive been getting pains from the groin up into the left side of the stomach..weird sporadic pains that go, its just the constant numbness down below and the lack of feeling which is frustrating. Glad to hear your problems have settled and hope the pain is low!!

    thank you once again for replying.

  • Hiya,

    Many thanks for taking the time to write.

    Firstly "thobbed off" means the dr is telling something so you go on your way but doesn't provide you with any helpful information. Sorry for my English slang phrases :-)

    Your spot on, they don't know what to say..it seems to be a waiting game and in the meantime take painkillers to resolve it..however time is the best healer!!

    Many thanks for the info of the details about the mri not picking up fragments of disc, sadly it shows you how much the health service rely on technology and interpretation of the visual findings..least the board member got it sorted out, sadly he/she had to undergo further surgery.

    I was looking into Cauda Equina which i appear to have alot of thd symptoms ie. saddle pain/numbness etc. My local dr was also concerned of this who wrote a strong letter to the ortho surgeon and questioned why my disc was not fused even though a disc bulge is still there. I am going to request a copy of my notes and mri's and take them to a neurologist.

    Many thanks again for your helpful comments.

  • Im not alone from all these posts...seems to be a huge problem in the US with health insurance. The UK is quite good at seeing a specialist but sadly takes along time to see one and whether they can sort you out is another matter!!!

    If i sit on any hard surface/chair the pain is instant especially in the groin and sharp pains along the genetalia. Even though my left buttock is numb i can still feel pain/bruising down the leg. I find i have to keep moving as the pain builds up..the left hip/sciatic nerve goes mad. Plus after sitting for a while my left calf is tight and the limp develops more and the increased numbness.

    the dr is going to put me on aniltriptiline (spelling probably incorrect) in the next 3 weeks to help with chronic pain. I have found diazipam helps especially at night to relax the nerves which seems to be at its worst.

    Bloody backs :-)

  • You might want to have an EMG and a nerve conduction study to determine if and where you have nerve damage. You could also figure out if you have a radiculopathy or if the pain in the groin might be coming from a peroneal nerve.

    Here is more info on CES:

  • for me (minus the penis...I don't have one, lol) but I've not had surgery yet. But my...ahem..crotch does get very numb and tingly and I have an occasional intense sensation down there that I can best describe as fire.....but that's not exactly it either. It saddens me to hear you are going through this post-op, because I have been lobbying for surgery in the hopes that it would remedy my discomfort. I find I cannot sit directly on my tailbone on any hard surface without my "stuff" going numb and tingly. Not to mention the leg/butt/hip pain. I hope things begin to turn around for you. How long exactly does it take to see a specialist in the UK? I chatted briefly with someone a while back who had been waiting months for an MRI. I thought I was being put off by waiting 1 week. I have a sister who is an OB/GYN and she is pulling string to have me see a colleague of hers (neurosurgeon) on this coming Friday. I am really trying to resolve my issues to retain some quality of living and to be able to work and be productive again. I'm asking, because, at this point, I'm not an advocate for socialized health care. I'm not sure that it's an improvement to our current system.
  • Yeah...I still get some nasty sensations in that area. Not often, but it's disconcerting when it happens. Hurts like hell. Not fire, more like pinching, and not the good kind. Stupid back stuff.
  • Hi John,

    Sorry for the very late reply.

    Sounds like the dr's don't take the time to explain post op complications and common problems...but I suppose they don't like to discuss them for legal reasons if you get my drift.

    Re: Urology thankfully I have not needed to catheterize like yourself. Im still getting deep bladder pain still which now indicates to me that i need the toilet, I don't get that "normal" urge to go but it is usually last minute.

    My specialist has since discharged me and told me to see my GP/local Dr. to be referred to a urologist if it continues!!!! even though they have NOW told me i have pre and post op CES.

  • Hiya,

    Hope all is well.

    sorry for the slow reply, been back in hospital and again been left in pain.

    You will love this, I had surgery in April I have recently seen the MRI for the emergency surgery following having the caudial epidural, which i was left for a week in extreme pain.

    A few weeks ago I saw a specialist physio who has told me I had and have pre and post CES symptoms and showed me the MRI. The disc covered the whole of the spinal canal and bulged out of the other side of the spinal column, it was huge. They have discharged me even though they state i need intensive physio programme as my recovery is very slow and i have hypermobility and have asked my employer to provide physio. I explained i am riddled with pain and have sciatica still in both legs and back. I can't even lie on my back for 10 mins then get up without the back going into spasms and pain. My groin and perinial area is still numb and down the left leg and buttock.

    The specialist said im lucky i can still walk due to the herniation and amount of compression. But they have discharged me even though i am experiencing alot of pain, numbness and the disc bulge is still there. Even my physio who i see every 3 weeks feels i was discharged too early. My GP/local Dr has written a strong letter to a leading spinal hospital in the UK to ask them for a second opinion and treatment as he feels "I should not be written off...and CES problems".

    Hopefully i will get some answers and support from the NHS rather than grin and bare the pain!!!!

    Your link to CES matches alot of symptoms and experiences which made me question my treatment and thankfully the Dr.s CES in writing which confirmed my fears.

    speak soon.

  • Hi,

    thanks for the reply.

    Sorry to hear your in a similar posistion to me. Your spot on about sitting down on hard surfaces etc. I also find a huge amount of tingling and pressure which of course is followed by deep pain. as im writing both of my feet are tingling. I try to keep moving every 10/15 mins otherwise the problems flare up!!!

    RE the NHS. If you need an MRI it sadly depends on the area/district you live and the current demand. Thankfully my GP wrote a letter to the MRI referral team who assesed me and it was deemed urgent. I got the MRI done in 4/5 weeks from my local Dr. sending a letter, I also accepted the next available appointment which was 20 miles away. But when your in pain you will do anything.

    Im sure since your posting you have seen the nerosurgeon hope it went ok?

    To be honest with anything serious like back problems i am now tempted to go private rather than the NHS to get the diagnosis and seek treatment on the NHS. My employer intially paid me to see the DR which was within a week and I was due to see him on the NHS in 4 months so it shows you how money dicates your health. I was fortunate the MRI etc was done so quick on the NHS.

    Glad to hear you are battling through it and continuing working. Sadly i have been off since feb 09 to date on full pay but want to work despreatly to keep myself mentally active and in a social environment.

    Speak to you soon.

  • Yes its a pain in the butt so to speak. How long have you had the problem and do you find sleeping/sitting/walking etc makes it worse or better. I find it hard to sleep and sit for any length of time.

    Hopefully I don't have any nerve damage but i was left for a week in pain so i expect the problem to be there sometime. The Specialist is now saying i have CES symptoms pre and post op and to grin and bare the pain. I still have disc bulge at L5-S1 and the 1 above with annular bulges and tears and the L discs are DDD which may explain the added pain.

  • Hi all,

    I have finally been told that i had and still have pre and post op CES symptoms which explains why im suffering quite abit still.
    I saw the MRI and the L5-S1 disc herniation was HUGE and covered all the spinal canal and squashed the nerves.

    The biggest problem is still sciatica in both legs and back pain/spasms, groin and perineal numbness with deep pain. I can't walk to far less than 50 metres without my back going into spasms and the legs not co-ordinating.
    The Specialist has told me im lucky to be walking but still discharged me even though i need to have an intensive phsio programme but have not offered it and declined me from asking for a referral to a leading UK hospital for rehabilitation!!! My GP has written a strong letter asking for my treatment to be reviewed as im still having CES problems inc. urology pain. Basically told to grin and bare the pain and time will tell if there is any damage.

    Oh well the problems continue but you just have to keep laughing.

    Still off work as the pain is hard to control plus the side effects takes its toll hence sleeping during the day, dizziness etc.

    Has anyone else had problems after having a caudial epidurial!!!!

    speak soon.

  • I'm confused by two things. Why do you still have the bulging disc? Is it the same one that was operated on?

    What do you think the caudal epidural is responsible for? I had two caudals after my last back surgery. They didn't really do anything, but I didn't have any problems from them, either.

    I can't believe how long you have to wait to get a MRI. I just talked my surgeon into ordering a "positional" MRI for me. There are only 100 of this type MRI "machines" in the US. I happen to be visiting my daughter in a couple weeks and they have two facilities in her city with this MRI equipment. When I called to make the appointment, I could have gotten in the next day.

    I also am going to see a new neurosurgeon -- called last week and am seeing him on Thursday.

    I am really worried about you. I don't understand why they can't decompress that nerve for you -- or do something to help you.

    Please keep us informed of how you are doing.

    Take good care,
  • Hiya,

    Thanks for the reply.

    I did question why i still have a bulging disc. They said the disc is still bulged on the latest mri and also the one above with mild thecal impression. Might explain why im riddled with pain even at night.

    The dr i saw intitally stated i had a disc bulge however it didnt warrant surgery however the same dr gave me a caudal epidural while i was awake due to possible complications. Afer the injection my back and leg went numb as if i had internal cramp which just got worse over a week hence a swift mri and surgery the next day. They decompressied the left side however im still in severe pain with the back. trying to get out the bed is a nightmare i have to hold on to the top of my wardrobe to keep steady as the sharp pain and spasms causes me a nightmare.

    Good luck with the nerosurgeon, i think i will be following your pathway. I have been told a nerve is inflamed on the MRI.

    speak soon.
  • I know this is an older case but I am curious how you are doing at this point. I also had the spasms down my legs that were intense to say the least. Horrible pain along with the numbness from the hips
    down and suffer from the siatica pain. My Dr put me on 600mg of Neurotin for the spasms (nerve damage)and 2yrs later I am up to 1800mgs. Which is also used
    to help aid the Fibermyalgia I've gotten since.
    This medicine has helped because I don't have them as
    often but I still have them. They come on fast after sitting in the ways you posted above.
    I know it feels like a never ending road we are traveling. I sometimes wish I had never had the first surgery and surely would not have had the 360 spinal surgery.
    I pray you are in some kind of better place now with all you have been through.
    Would like to know how you are doing and if you've ever been on Neurotin.

    Thank you for your posts!
  • I am also sorry for being somewhat tardy and not replying earlier.

    Wayne it seems that you had your surgery very slightly more recently than I did.

    Firstly, I presume that you are a Brit in the UK from your reference to the NHS and therefore you are dealing with a different system to many of the people on SH, many of whom are Americans, and perhaps Canadians amongst, no doubt, many others. Everyone is welcome here but not every country runs on the same system. I actually understand the NHS system reasonably well as I was born and raised in the UK although I am now an American Citizen with dual citizenship. I think that part of your problem may be due to the "slings and arrows" of navigating the NHS. I am not sure where you are located but it may be better if you could get your Doctor to refer you to a spine unit with a pain management unit in a large teaching hospital. They may be more sympathetic to your problem in the quest of their own research rather than Doctors that may just simply fob you off.

    I am not a doctor and therefore I can only give you the benefit of my own personal experiences. Having said that I am somewhat confused by your problem having somewhat been there in as much as effects of lower lumbar nerve problems. The question is, are your problems connected to what happened in your surgery or are they all or partly to do with subsequent events not necessarily connected to your surgery.

    Firstly I would like a doctor to look at your pre-surgical MRI and compare it with your post-surgical MRI to see the differences and whether what they are looking at now was there before. If that was the case then the surgeon may not have dealt with the whole problem while you were in surgery.

    You can only discover this by investigation with a new spine doctor. If I were in your shoes I would want to get to the bottom of this issue in order to get back on track. You might like to ask your doctor for those MRI copies and even be prepared to pay the small sum that those copies would cost, so that you can progress the matter properly.

    Your other issue of pain and numbness in the lower regions
    may also be a product of the surgery or if not it just may be a prostate problem which has coincidently occurred at this time.
    In that regard, it would be most informative if you could get a copy of the surgical notes to see exactly what has been done. These notes can also be read by another doctor and he or she may then be able to throw some more productive light on how and why this has happened. At least then you will have some clarity as to why you are in pain and further clarity on how to solve the problems of the pain.

    Good luck with this and I would be interested to see how you get on with this approach.

    Take Care

    John B
  • I would like to know how your recovery is now, I am booked to go inot hospital in the next few weeks, I am really very nervous about going for this operation, after reading about all of your issues
  • snowy79ssnowy79 New ZealandPosts: 1
    Hi Wayne,
    I feel your pain mate I had a double fusion 10 months ago and am having pain in this area which is progressively getting worse. 4 days after surgery whilst still in hospital my genitals were black and blue and in alot of pain and was informed by the surgeon and head nurse it was just tracking from the surgery and it would go away in a few days....well it didn't. After discussions with my doctor he is convinced it is nerve damage which can only be fixed with more bloody medication (probably for rest of my life). I have requested a copy from the orthapaedic clinic of my surgery notes as it is quite common in my country for this to be noted but not passed on to the patient so for your own piece of mind I suggest you do the same.
    Good luck
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