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Pain does not match MRI?

Posted , 6 users are following.

UnhappySpine
UnhappySpine

Hi All!  I seen a neurosurgeon last week  and was very confused about the outcome of the appointment.  Before seeing this surgeon my physio had spoken to a different surgeon at the same hospital who relayed that I would probably require a foraminotomy, laminectomy and perhaps a fusion to stabilise.  I had prepared my mind for surgery in my future.

Perhaps most importantly my pain does not match up with the MRI imaging.  The worse of the damage in my neck is at C4, 5 and 6 with high grade stenosis  of nerve root exit foramina and the spinal cord is being displaced and indented in a few places.  The disks are all desiccate, there is loss of vertebral body height, loss of normal cervical curve and I have large osteophytes.   I should be having problems using my thumb for example but instead I have pain running down my arm and into my ring and pinky fingers(which is coming from C8 nerve)  I have trouble with fine motor function in my hand.  Most noticeable to me for example is that I can no longer sign my signature and the surgeon does not know why as I have no major weakness.   I am creative so this inability to use my hands for fine for things such as drawing is devastating to me.  Does anyone else have pain that does not match up to imaging?

 He ignored the fact I have chest pain and the feeling of a tight band constricting my breathing. Although this is not as common as it was a few months back, it frightens me.  I have problems with my legs too but he thinks it is probably nothing.  I have had sciatica in one or both legs since 2010 and it only largely left a few months back.  Now I have intermittent numbness and pins and needles instead and my left leg will occasionally give away on me.  Thankfully the cold wet feeling I felt  several times a week in my saddle area is now mostly gone but I did tell him of this most strange sensation.  I also told him that I had lost control of my bladder just the once a couple of weeks ago.  I thought I had stopped urinating but when I stood up and walked away I was still weeing.  These things worry me because they are so strange.  He has ordered a lumbar MRI to be sure but has told me he is fairly certain it is nothing.  I must wait at least 3 months for this in the public system.  Should I be worried?

He told me with the neurological exam that he found no gross abnormalities. On this day I did not have the brisk reflex under my knee in my legs that doctors have not been able to understand.  He did not ask me to stand for any testing.  He would have realised for example that I am unable to walk heel to toe and I loose my balance easily.  I am concerned he has missed something especially since my symptoms changed so much after the MRI imaging was done last year.  Could it be that the degeneration has continued and there is more pressure on my spinal cord or is that unlikely?

I have widespread pain with numbness and pins and needles in arms, legs, feet and hands and no explanation for it.  I am being followed up with nerve conduction studies and emg for a single nerve in my right arm plus a referral for pain clinic.  The wait is 6 months and I can not bear waiting all this time.  He mentioned fibromyalgia so I am now not sure of anything.  If I do not need surgery(he said risk outweighs benefit and they would wait until my spinal cord is smaller) who do I go to for help?  I cannot live like this, in pain and not understanding why or even how to help myself.  I have an appointment soon with a private neurosurgeon but I wonder now if I should cancel it considering I do not need surgery.   Who can I go to now for help?

I hope somebody here can help me understand this and make some decisions about what i need to do next.......

0 likes, 12 replies

12 Replies

  • gerard03546
    gerard03546 UnhappySpine

    Posted

    Hi there,  For me CS was brought on by Rheumatoid Arthritis diasgnosed in February 2014, I went from being normal to broken in the space of three months. very much like your symptoms. Unable to stand or walk properly, constant muscle weakness and pain, virtually no upper body strength, pins and needles in legs and hamds, skin felt like spiders were crawling over me, muscle spasms in bed and during the day i.e. involuntary knee, ankle and arm jerks, ankles and knees giving way without warning. Worst of all  piercing pain like toothache behind my right ear where the nerves enter the brain would come and go during the day or night without any apparent reason. I could not sign my name properly or cut meat with my right hand. nor lift it more than an inch or two from the table.

    The MRI revealed spinal cord stenosis. My mobility was decreasing to the point where a wheelchair would be required. I had a nerve conduction study which ruled out MS but determined carpal tunnel problems in both hands. Got the left hand done which made no difference. Saw a Neurologist who said next things to go are the bladder and bowel control and said the best course of action was an operation. I was told 60% have a good outcome 20% no change or no more deterioration and 20% no improvement.

    The operation described as a posterior cervical laminectomy with screws on 4 1/2 vertebrae was performed in November 2014.  Cutting away the horny back part of the vertebrae to make space for the cord  with screws and steel posts supporting and stabilising the cervical spine.

    The immediate impact was relief from the pain behind my ear and some improvement in muscle strength in my right arm. My neck is stiff but I can drive, sign things and cut meat. Otherwise my gait is still poor, walking stiff legged, the weird sensations on my legs and skin, and muscle weakness remain, legs jerk in bed occcasionaly. My joints still ache too but that is probably the RA.  I have been told it will be 12 ~18 months before I can expect substantial improvement and hopefully it won't deteriorate any further, I have yet to start physiotherapy for the muscles.

    I am fortunate to have insurance, I believe, but don't quote me, the NHS and many sufferers pefer conservative treatment becuase of the success rate, until incontinence is an issue and then it may be treated as an emmergency. This may vary around the country and on the views of the Neurologist and Neurosurgeon.

    Sorry, I cannot be of any more help because for me it is early days and I can only hope for the best, initial signs are good. It would be good to hear from others who had the operation.

     

    • UnhappySpine
      UnhappySpine gerard03546

      Posted

      That sounds truly horrible Gerard, going from normal to this in such a short period of time.  I too wonder how it all changed so quickly. I seem to have lost strength all over but neurologist compares one weak side to the other with no idea you were formerly stronger.  I get tired out easily now, even just carrying bags of shopping.  I do not have problems walking as you do but know that I often walk with a limp or something now.  I am clumbsy too which is embarrassing.

      I would like to know what has caused the advanced degeneration in my neck but nobody cares.  I have not even been checked for it despite arthritis(we think of rheumatoid type) in the family.

      I hope that you start to see imporvements after the surgery you have had.  Have you tried accupuncture or kinesiology?  I have had great results with kinesiology.......

       

    • gerard03546
      gerard03546 UnhappySpine

      Posted

      No, I did not go for any other treatments. I may have had the RA for a long time before it was diagnosed and treated which could explain why it went downhill so fast.

      I notice you have mentioned reflex responses in responding to someone else. .Heightened reflexes can be demonstrated by the presence of Hoffmann's sign. Holding middle finger loosely and flicking the fingernail downward, causing the finger to rebound slightly into extension. If the thumb flexes and adducts in response, Hoffmann's sign is present.i.e.heightened finger flexor reflexes suggesting an upper motor neuron lesion (damage) affecting the hands. I am no expert look at google NEUROEXAM or reflex.

      As I understand it the nerves carry information and instructions to and from the brain. Eventually most of them, but not all, end up in the spinal cord. Stenosis or damage individually to their covering causes loss of signal or sometimes leakage of the signals one to another. Stenosis in the neck can effect the nerves from all over the body. Hence different symptoms experienced, Anything that reduces the damage, relieves pressure or assist healing should help. Hence steroid lumber injections, simulation of one nerve may effect another - accupuncture and anything else that reduces the pressure can be beneficial. For me I could not feel pin pricks in legs arm or body below the location of the stenosis.

      Best of luck, ultimately the consultants should be able to help although many lack communication skills. They tell you and do things but don't always explain what it is for and what was the outcome. The only way to deal with that is to ask questions and sometimes make notes.

  • Gerry_the_neck
    Gerry_the_neck UnhappySpine

    Posted

    Hi UnhappySpine

    Just reading through your list of symptoms,  and something flagged up.  The symptoms you have in lower areas seem very similar to symptoms normally associated with Cauda Equina,  a condition, I believe,  arises from trapped nerve in lumbar region....and should be treated asap.  Might be worth asking your GP to consider.  THere's plenty of info on Cauda Equina on net,  and it is not associated with the neck issue.

    Re the neck.....there is no C8 vertebrae, as far as I know,  just 1 to 7,  and then there are the Thoracic vertebrae...T1, T2 etc.   Your symptoms could be any mixture of issues from C3 to C7,  and possibly also  extending into the Thoracic range.  I believe the Pinky and Ring finger numbness usually indicates an issue at C5 or C6,  but don't quote me.  Many symptoms can occur simply because of a threat of compression,  and once the threat subsides,  the symptoms should follow suit.  Symptoms from stenosis tend to last longer depending on what type or regularity or impingement is occuring.  THe Neuro people need to be able to identify a direct link to a symptom before they can decide whether surgery is appropriate....but quite often,  they wont make it clear to you until they have that confirmation through MRI, EMG etc.,....because they just don't know how it might develop.  THey do know that some cases resolve without surgery,  so that consideration is sometimes the 'least wrong' approach,  but they assume our ignorance in these matters, and fail to clarify their own indecision.  Also,  they are perhaps right to show reluctance to intervene where multiple degenerative issues might confuse any outcome predictions for surgery.  With C/S,  a wait and see policy is sometimes the only way of assessing future progress,  and it can deliver up positive surprises......only problem being they don't usually advise good self management techniques to see us through that wait and see, perhaps because they are mostly concerned with identifying issues which clarify the route to surgery.  So,  when we go to the consultants,  they're thinking " Maybe wait a year and reassess for surgery",  whereas we're thinking "  How do I deal with the pain in the meantime ?".  It's an old C/S health service approach problem that conveniently sidesteps our everyday needs,  and we must fall back on our intuitive good sense to create management plans for ourselves.

    • UnhappySpine
      UnhappySpine Gerry_the_neck

      Posted

      Hi Gerry,

      I cannot see C8 mentioned on the MRI report. The neurosurgeon said C8 dermatome which is the ulnar nerve. It must come from between C7 and T1.  On MRI C7/T1 is fine which is why I am so confused.

      When I researched my symptoms for lower body I too came up with cauda equina which has me concerned.  Why though do the symptoms I have that suggest this come and go?

      I just wish they would explain a little more to us.  The surgeon flicked my middle finger and my thumb moves.  This seemed important to him but he would not tell me what it meant for example. It is our bodies after all.  There was so little time for questions and I now must wait 6 months to see him again whilst I am worried sick.  We are all just trying to get through and it seems many of us are confused and do not know what to do to help ourselves get through each day. 

      Do you know of other specialists that can help us when surgery is not required?

    • Gerry_the_neck
      Gerry_the_neck UnhappySpine

      Posted

      Usually,  a decision to not take the surgical route means a referral back to Physio for exercises etc,  and to GP for pain killing meds.  All the research/trials/tests confirm that these 'fall-back' options are no more reliable than wait and see self management.  There are many different types of treatment suggested, on utube etc,  but most involve some form of vigorous exercising ,  which,  in my experience are very dubious, to say the least,  and could be responsible for aggravating symptoms.  Personally,  I'd suggest finding ways to get the neck as relaxed as poassible, especially when sleeping,  and then gradually get to know the most likely movements which aggravate the symptoms,  so that those movements can be avoided in future.  If that helps to ease the worst symptoms,  encouraging better self management and thus less intensity of symptoms....that's about as good as it gets.  THere just seems to be a lack of understanding of these self management techniques in the professional world,  and so there is little advice available besides Physio and meds.  It's up to each individual to choose their own preferred treatment.  For several years I've been checking the test results online,  and I've not yet seen an accredited test which has produced results that better a non-intervention approach.  Of course we are not informed of the failing results because that would undermine the only advice they know to give.  It's one of those situations where we might well be better off listening to our own instincts.  In defence of the services I would say that their options are restricted by a lack of good understanding of neurological issues....maybe one day they will turn to us and ask for our advice,  because we're the ones with a familiarity of the actual symptom dynamics of the condition we experience every day.  THere's something in their professionalism which discourages them from taking that humble first step,  and maybe increasing the options for better treatment in the future.

      That's not a 'rant',  by the way.  Just experience.

      Gerry

    • Gerry_the_neck
      Gerry_the_neck UnhappySpine

      Posted

      PS.....

      A GP or Physio should be able to determine Cauda Equina , or not,  from the specific symptoms presented.  Sometimes they need to be reminded of the possibility so that they can do the proper checks....otherwise it might get overlooked.  That happens frequently.

  • Brevis
    Brevis UnhappySpine

    Posted

    Hi there. I went to see SO many different surgeons and most of them told me my symptoms did not warrant surgery. In the end I found a lovely (private) nurosurgeon who actually listened to me and told me that I had to sort out my problem quickly. I had been suffering for 2 years with terrible neck pain and nerve pain down my arm. I have just had a C5-6 fusion and although it is taking some time to recover, I am very glad I had the surgery. The osteophites I had were growing to such an extent that they would have completely blocked the nerve exit apparently. None of the other surgeons mentioned this. Living in constant pain is utterly debilitating. I would definitely get another opinion. If you can no longer use your hands properly, you must get something done about it. Which part of the country are you in?

    • Brevis
      Brevis gerard03546

      Posted

      Well, it's still early days. About the 10 week mark. Muscle spasms are the worst problem

    • gerard03546
      gerard03546 Brevis

      Posted

      Thanks, but another question re muscle spasms. For me I get  uncontrolled leg jerks when lying down. i.e. kind of a kick but perhaps only an inch or two of movement. Is that what you mean?

       

    • Brevis
      Brevis gerard03546

      Posted

      No - I just have a permanent ache at the base of my neck which I am assuming is muscle tension and spasm. The physio is non-committal...

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