concerned about cauda equina syndrome

[lumbarworry]

I was researching into my hip and leg problems and contacted a physiotherapist online, who suggested cauda equina syndrome was something I needed to discuss with my doctor because of the nature of my symptoms.  This has worried me hugely, as without going into to much detail I can see where they reached this idea from.  I have suggested it to the nurse of my hospital consultant, and will wait to hear from them.  I had a lumbar mri and it did not concern them, but I would appreciate help with understanding it.  There were multiple lesions in bodies of T12, L1, L2, L4, and S5 vertebrae which were described as haemangiomata.  There was high signal on the T2 and STIR sequence and low on the T1 sequence.  I have a scoliosis.  There is dehydration of lumbar discs.  At L4/5 there is left lateral disc protrusion narrowing the left lateral recess and left exit foramen, but without significant neural compromise.  Hypertrophic facet joints are seen at L5/S1, but without nerve impingement.  I am female early forties and have hip, lower back and leg pain and weakness.  I also have other symptoms (bladder) which alerted this physiotherapist and a chiropractor to suggesting cauda equina syndrome.  I am really worried now.  Saw a neurologist but he wasn't very good and am waiting to see if I can be referred elsewhere.  Take morphine, other opiates and valium every day for pain.  Should I request mri of rest of my spine or just trust that there is nothing neurological going on?  This weakness is worsening and  unusual for me and I am now starting to walk with a limp which upsets me as I used to be very proud of my good posture and strong legs.  I trust the mri is okay, but could you still explain it to me as well as cauda equina syndrome?  How can I approach my doctors about this without them dismissing me?  I have an orthopaedic appointment shortly and want to raise my concerns.  Thank you very much

[JainMD]

Hi,
I have realized from your post that you have understood the importance of your health and criticality of your condition.
I hope the meeting with your orthopaedician goes as planned and he understands the importance of condition and necessity for urgent intervention.
I think you should be asking for repeat evaluation with help of MRI study.
I would be happy to know the progress of your condition.
Keep me informed if you have any queries and also what the doctor has to say about this.
Bye.

[lumbarworry]

Thank you so much for your concern and advice.  I have contacted other experts in physiotherapy and a chiropractor through similar forums and they are all suggesting the same thing.  It left me confused at first as my neurologist was so dismissive, but he did not understand how weak I had become, he just concluded I was 'unfit'.  I was extremely strong and fit previously so the change over the last year or so is very dramatic for me, but to him I must have just looked like a long term lazy person.  I have since contacted the hospital and believe another referral is being made, also I have an orthopaedic appointment tomorrow, and really need to make them understand how bad things have got.  I am getting some reduced sensation/tingling in lower legs now and loss of bladder sensation, along with pain in the area.  No-one seems to be adding all these symptoms together, just each department treating one aspect of the problem.  I am scared, and I thank you and the other professionals for making me scared, as I don't want to find out that there is a problem only when it is too late.  There are people twice my age who have better mobility than I have now, and who do not need to self catheterise their bladders as I have done for the last year, and it is not for lack of exercising.  How could I have just carried on thinking this was somehow okay and just me approaching middle-age?  Thank you again.  I will keep in touch with you and others who've helped as I get more information.

[JainMD]

Hi,
I feel sorry that you have to go through all this.
Cauda equina syndrome is a devastating complication that occurs when a lesion causes nerve root compression of the cauda equina.
Unchecked compression results in permanent neurologic loss, leading to paralysis of the lower extremities and loss of bladder and bowel function.
What about bowel habits, are they been altered too?
Central herniations often are associated with back pain only, but they also may lead to cauda equina syndrome.
Changes in bowel or bladder function, specifically urinary retention with saddle anesthesia, may indicate cauda equina syndrome.
Numbness in the groin or area of contact if sitting on a saddle is Saddle anesthesia.
Your MRI report suggests that you have nerve compression at the lower back due to various causes.
I think you should be consulting an orthopaedician at earliest and get imaging study done.
MRI should be planned which is used to document the pathologic features if surgery is contemplated or spinal stenosis is suspected.  It can also be used to confirm the diagnosis of cauda equina syndrome.
Alternatively you can visit ER close to you as this requires immediate intervention.
Cauda equina compression, which can result from a large herniated disc, should be decompressed on an emergency basis.
For patients with severe progressive neurologic deficit, or the development of cauda equina syndrome, surgery should be considered the 1st-line intervention.
Keep me informed I would be interested in following up with your progress.
Bye.