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Loss of sensation in saddle area and lower extremities

HilaryHHilary Posts: 17
edited 06/11/2012 - 8:01 AM in Lower Back Pain
Hi there I'm new to this forum but would appreciate any information I can avail of.I am 45 years old woman whose life is being made a misery because of a numb like feeling in the saddle area and all lower extremities.My MRI reflected disc bulge on L3L4,L4 L5, L5S1,it's a Living nightmare.There is no particular reason as to why my lack of sensation is so bad.Could anybody advise me I am at a loss to know what to do or what the outcome will be
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  • This was my report as is. MRI spine lumbar and sacral T1 and T2 were performed in sagittal sections and T2 in axial sections. Mild degenerative changes noted at L4-l5 and L5-S1 levels with mild OA changes seen in facet joints at these two levels.A slight left lateral disc bulge seen at L:-L4 level caused slight encroachment on the left exit foramen and with no significant stenosis.A slight posterior disc bulge noted at L4-L5 and L5-S1 leels which caused minor encroachment on the exit foramina bilaterally at these two levels and with no significant stenosis.No bony vertebral fracture or destruction seen.Normal appearance of the conus of the cord.This all sounds very informative but I haven't a clue and my gp wasn't very helpful in his opinion which was [I can't see that surgery would benefit you in any way] when I asked him about the loss of sensation in the saddle area legs and feet he seemed very dismissive.My physiotherapist suggest seen a neurologist so I am presently awaiting an appointment. People look at me and because I am walking reasonably normal and don't show any outward effects I sometimes feel they think I am exaggerating my symptoms.However I can no longer sleep in my bed I relax in a recliner chair and try to sleep a little at night which is doing my marriage no favours as is the sexual dysfunction.I am very lucky to have an understanding husband but I feel inadequate and depression is now another problem to deal with. If anyone can advise me please do I feel very much alone with this as nobody seems to understand how I feel.Chin up is well and good and I hear it so many times and I try to remain positive outwardly but inside this is soul destroying.I am sorry for such a long comment but it is a relief to just be able to say how I feel.
  • Hi Hilary

    Sorry to hear you are having problems

    Now I am no doctor but I have a large central bulge at L5-S1 and I have always been told that if any numbness is felt in the saddle area I should be going straight to A&E. I don't want to alarm you at all but this type of numbness has always been stressed to me as being quite an emergency. I am shocked your GP was dismissive

    Numbness in this area can indicate one of the discs in pushing on the nerves that lead to that area and can lead to the syndrome known as 'cauda equina'. Basically the group of nerves that come off the end of the spinal cord ressemble a horses tail - hence the name. The lower lumbar discs are the ones which cause pressure on this group of nerves.

    These nerves supply your legs, bowel, bladder and saddle area (vagina,perennium and anus)

    Did your GP do any sensation tests with you? Last year I started to have odd sensations at the top of my thighs and he immedicately did pin prick tests to see how much sensation I had lost. It actually turned out to be fine.

    My advice would be to get a second opinion quickly. If you are starting to suffer from cauda equina syndrome, fast treatment is needed to prevent permanent damage.

    How long have you have this sensation? Are you having any problems with your bowel or bladder?

    As I said I am not a doctor and could be wrong - I certainly don't wish to alarm you or cause you any unnecessary stress but I think you should get this seen to asap. Maybe a trip to A&E - just for reassurance.

    As far as pain is concerned - ice works wonders. Wrap an ice pack in a towel and apply it to your lower back for 10 minutes every hour - never use heat as this can worsen the pain. Basically the area inside where the discs are pressing is hot, inflamed and angry so ice will help it - heat will not.

    Please let us know how you get on

    Amanda x

  • Thanks for your reply Amanda much appreciated.I have had this since January the 20th and my concern was much as your own regarding caudal equina.When I mentioned this to my gp he said although it may be similar to this syndrome it would not be classified as it un less I had dysfunction of bladder or bowel ,which thank god so far I havent but it is a constant worry. four years ago I had a similar symptoms which abated after approx nine months but was left with a weird sensation in my feet.I attended a neurologist at that time who decided it was all in my head his diagnosis nearly destroyed me both in body and mind therefore I was hesitant to even go about it to my doc this time but worry got the better of me and he said the MRI does not suggest that I could have any problem with the bowel or bladder I just hope he is right.Hopefully I will get an appointment with a neurologist within the next week.Thanks again I will most definitely try the ice packs.
  • I know how you feel - I constantly worry about cauda equina - my bulge is large and I was told it was a real risk but I do not want to have surgery unless it's absolutely necessary.

    I was offered a microdiscectomy but was worried I would end up worse off so decided against it

    My trouble started 3 years ago and my disc had an extruded piece which was pushing heavily on the nerves resulting in terrible leg pain but that settled after a few months

    Then last year it came back with a vengeance and I had pain in both legs, my bottom, hips and pelvis and couldn't sleep or get comfortable unless I was laying on my front. I kept feeling the need to wee and worried the nerves were starting to get properly squashed but after a neuro exam they decided all was ok.

    Again it settled but has started to come back again... pins and needles in the side of my left is creeping back in and that horrible hip pain

    This type of back pain is a terrible thing and I wonder where it will ever end.

    It's stressful when doctors dismiss you - unless they have suffered themselves I don't think they will ever understand the misery and the way it impacts every part of your life. We ran our own business but had to sell it because I couldn't do my job. Now I can't work and we are struggling on hubby's part time wage. I can't get any financial help as disc problems are not deemed a disability. What they don't think about is even when the pain isn't too bad, lifting and bending etc can just set it off again so my work options are very limited.

    Makes me very angry when there are lots of people out there who are more capable than us and they get help. Just a disabled badge to enable me to park close to town would be nice - walking can be a real killer at times!

    Definitely do try the ice - I had an episode last year where I couldn't stand up because the pain was so severe and ice really helped - make sure you're consistent with it throughout the day.

    Good luck Hun and I hope your symptoms settle down soon

    x



  • Really sorry to hear you are suffering so badly I actually feel bad about my rant now because I don't have any severe pain just this horrible annoying sensation all the time.I understand how frustrating it all is and only now understand why some people are driven over the edge and can't cope anymore.I found because I didn't fit in the box regarding all symptoms I was told it was my imagination that arrogant man nearly destroyed me.I know exactly what you mean when you feel the tingling sensation coming you know that trouble is ahead, I tried acupuncture bone therapy physiotherapy and have exhausted all my funds and still no further on.However my physiotherapist is very understanding and says my doc is an ass and he says he will do everything he can to help he is trying to organise an app for me with a consultant he knows,so hopefully.I have private health care but it depends on what hospitals they work from.I hope things improve for you as I know financial worries is something we all could do without on top of everything else.I have two kids in college and it's a major concern with only one wage coming in but we do our best with what we have .I don't feel confident driving any great distance because of the feeling in my legs so unfortunately my husband has added pressure of running errands I would normally do I get so annoyed at myself and my inability to do the simplest things.I cannot understand why you don't qualify for a disabled badge surely your doc could write you a letter letting the authorities know how bad your circumstance is I know my mum qualified after a doctors letter maybe it's worth pushing for again.I hope you feel better today and that life improves for you because it sounds like you deserve a break.Take care x
  • Don't feel bad Hun - although you may not have a lot of pain I can imagine the sensation is still driving you mad!

    The thing is even if the MRI results don't match up with the numbness - it doesn't mean it isn't there - doctors can't understand what they can't see

    Maybe one of the nerves being affected by the bulging discs is over sensitive - there's obviously a reason for your numbness - I don't see how a doctor can think it's in your head!

    Some people have terrible symptoms but their MRIs show nothing and the opposite - some people have no problems but an MRI would show knackered discs and all sorts of problems

    MRIs don't always show every problem anyway - only the areas which carry a lot of water hence why discs show up well

    I also have 2 kids - one is going to college in September so I know what you mean about the financial side

    Have you had any kind of nerve induction test? I had one on my arm for carpal tunnel where they pass a small electrical current through the nerve and see what the reaction is.

    Also the piraformis muscle which is in your bottom can also squash sciatic nerves although I imagine your physio has already thought of that?

    Out of interest did you have an open MRI (a scanner without a top) or the conventional tunnel type? I only ask as open MRIs are known to be much less reliable and the results are rarely as clear

    x
  • Hi Amanda, I never heard of the piraformis muscle but that is the area I feel the problem is coming from. My initial perception of it was feeling like i had a golf ball positioned there now it feels like a pulling from the vagina back up and in to the bottom area anytime I sit down, my stomach actually feels sick with the tightening of it.It is such a relief to be able to speak so openly about it to somebody else because I feel so embarrassed even trying to explain it to my family.My physiio spoke with me yesterday to try and analyse how and when it started as he needs to forward on a request to a consultant but in doing so explained that the results of the MRI would not deem it of emergency so he tried to get as many details of how it occurred and how it manifests ,like you he agreed that something else is going on that is not necessarily showing up on scan.my scan was the conventional tunnel type.HOwever I don't know if it's significant or not but four months prior I needed to attend a gyno with a burning sensation from within and after many vaginal scans pap smear and a lot of poking around I was told I had an ovarian cyst 6 cm thankfully now which has started to shrink and also some cervical erosion .At my last app with him in feb he said he wouldn't do anything about the cervix because of the back issue.I wonder sometimes are they too quick to just give up on you.I have checked myself with a pin prick in many areas and although I can feel something it's not the same as it should be which is so confusing.My sister suggested that perhaps I had inflammation throughout another that perhaps it could be the onset of parkinson disease or ms I just wish I could find out what the problem was and how to deal with it.Is your child moving away to college in September and have you concerns about that because added stress won't help your situation.IF it's of any reassurance my daughter moved away to college at seventeen she lived away from home for three years only returning at the weekend and is now twenty one doing her masters but hoping to do a phd next year in either England or Canada it's amazing how independent they become but cutting the cord is a lot harder for me although I would never let her know that, having her in the county is more preferable but that's life.I will research about that piraformis muscle and see if the symptoms are similar and suggest it also to my physio,thanks so much for the feedback , take care x
  • Yes do look up the piraformis - I had never heard of it until last year when I had awful pain in the underneath of my backside. There are stretches you can do to try to release it.

    Coincidently I also had a burning sensation in my urethra and kept feeling as if I needed to wee - not in a cystitis way though. More like a pressure.

    I think seeing a neuro will be great - hopefully he/she will take a bit more time to try to discover the cause of your problem. I have been referred to a neurosurgeon also but I am in the uk so it will take months. I don't want surgery (better the devil you know) but want to discuss other options.

    I am only 38 and need my life back instead of feeling like an old lady!!

    My son will be travelling to college every day rather than moving away thankfully - he can barely make toast so I don't think he would cope lol

    I do hope you get some answers soon - whatever the outcome it's better to know what you are dealing with - not knowing what it is must be awful and you must imagine all sorts of things which is very frightening.

    I have sent you a buddy request and if you accept I will send you my email address. Then we can email privately and if there's something you want to talk about I will be there for you. I sometimes feel like I moan all the time so tend not to mention it to my hubby much anymore - he does try to understand but it is nice to talk to others and air your concerns

    Take care Hun x
  • Finally got an answer to what is wrong after MRI of brain thoracic and spinal tap I have finally been told I have mild ms.
  • Have you had any nerve tests done? I would be finding myself a new neurologist and doctor. Obviously there is a problem there. Maybe there just not looking at the mri close enough.I have had numbness in that area before and down my legs as well and it sucks big time.I have some nerve damage in my one leg but my neurologist still says that my problems in my spine shouldn't be causing them. What a crock. Here's hoping that you find someone to take you serious! Good luck.
  • I have severely decreased sensation in the saddle area since the last (5th) lower lumbar surgery. I do have bowel and bladder function but have difficulty initiating and completely emptying my bladder. I just have to be patient and use relaxation techiques to do the job properly as I can not use incontenence supplies. They break me out. I have seen a urologist and he confirmed that the prolem is due to post op nerve damage. Oh well.
  • Hi there,
    Sorry I obviously didn't explain very well,when I went to see a neuro surgeon thinking the problem was to with the lower lumber region, he immediately knew the problem was further up,and ordered a Brain and thoracic scan which showed mylitis within the spinal cord hence the diagnosis of ms.Every test under the sun was carried out echo nerve lumbar blood and now finally an NMO antibodies test.Thank God I now have a neurologist I can relate to,who advised me to forget about mistakes made in the past and to move forward,but agreed that I probaly had this condition five years ago when the other neurologist told me it was all in my mind.I will have further MRI scans done in august to see if any more damage has occurred ,but I'm just relieved to finally know what is wrong,not an ideal diagnosis but at least I can now move on with my life.Thanking you for your interest
  • Hi there,
    Sorry to hear you have been left with abnormal saddle sensation,it's such a horrible feeling.I know you say yours is because of surgery but has your neurologist scanned your torso as well.I was shocked when I was told my problem was related to scarring on my spinal cord (diagnosis mild ms) I always thought the problem was related to bulging discs in the lower lumbar region, how wrong I was but more importantly how wrong was the first neurologist I saw five years ago who told me I had somotoform disorder ( imagining my symptoms).He was an utterly dispicable man who was so much up himself he couldn't see what was staring him in the face..It has taken five years to get the answer but at least now I have.As time goes by and if your not happy with the urologists opinion I suggest you get another I kick myself everyday for not trusting my own instincts,especially as they turned out to be right.I wish you well and if your happy now with what the urologist says well and good,but if you ever have any doubts just check it out.Take care
  • Oh boy that really sucks! i hope that you can get better relief some how!
  • Well the relief is finally knowing what is wrong,at least now I know what I'm dealing with.I feel very positive about the diagnosis and as its mild here's hoping it won't get any worse.ms isn't the end of life just a new way of living it,that's something I tell myself every day.
  • Hillary,
    I have similar altered sensations in the saddle area. The docters have told me that only if I lose control of my bowels would it be considered an emergency. Is that true?
  • Hi there,
    I suppose your doctor is talking about cauda equina loss of bowel and bladder control,sometimes loss of sensation in the saddle area can be the first suggestion that something is wrong and needs to be investigated .I can only speak from own personal point of view,my gp told me much the same as your own but thankfully I went ahead and seen a neurologist,and as you know my diagnoses was mild ms.I don't want to concern you,but if you have loss of sensation there has to be a reason behind it,either a trapped nerve from bulging discs or some other condition.MRIs of the torso brain and lumbar regions would rule out anything serious and I'm very glad I had all three done.I wish you well with whatever you decide to do,but peace of mind is very important,keep in touch and let me know how you get on

    Hilary
  • elisarosseelisaross Westerly, Rhode IslandPosts: 1
    Hi Hillary, I've been doing research on the subject of sensation disorders during my own medical journey. I was wondering if you're still active on this site. I don't find many who have experienced this problem.
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