Risk of surgery vs living with Cervical Spinal Stenosis

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I was diagnosed with cervical spinal stenosis 2 months ago. I have been on a rapid learning curve since and am still seeking answers from the medical profession and fellow sufferers.

My story (should you have the patience) goes like this -

One year ago I had micro surgery for carpal tunnel syndrome on my right hand under local anaesthetic. It was a miracle cure, with immediate pain relief after surgery pain receded. I still have carpal tunnel on the left hand, but nothing like the pain in my right arm and shoulder that brought me to tears and sleepless nights. So I chose to leave ithe left one be.

In November I had a stomach upset, bad enough to go to my GP who adminstered a cocktail of injections to alleviate nausea, sickness, diahorrea and 4 days worth of dehydration. A few minutes afterwards, my mouth was tingling, I felt sick and faint and could not breath. My pulse went from normal 50bpm to 132, oxygen to 72 and bp to 50/30. My veins collapsed, but the GP managed to get me on oxygen, injected cortizone and adrenalin and the IV for fluids was finally insterted in the ambulance en route to the hospital. 

I spent the next 4 days in ICU, where I stabilised in the first day. Allergic reaction to the drugs was considered but rejected, as the same drugs were given by IV in hospital. My collapse was diagnosed as hypovolemic shock. Alll organs were checked for damage arising from the oxygen deprivation. Everything was clear but I remained dizzy, unbalanced with moderate headache, so was examined by an orthapaedic specialist who arranged a CT scan of my neck and head.

The CT scan revealed spondyloarthritis of the cervical region, discopathie of C5-C6 and C6-7. An MRI followed which revealed C4-C5 disc protrusion and degenrative lesions of joints of Luschka, C5-C6 loss of disc space, herniated disc, bone spurs, C6-C7 same as 5-6, spinal canal compressed to 7.6mm and a hemangioma in vertebral body of C6. 

I was referred to a neurosurgeon who had a more detailed MRI done and did physical checks which demonstrated early myeolopathy. It seems this explained my balance and fine motor skill issues and even my carpal tunnel. The surgeon strongly recommended surgery as soon as possible as, whilst delicate and lengthy it was at this stage possible and safe. The alternative would be major adaptations to my very active lifestyle or risk major damage from a minor fall or sudden twist of the neck. Surgery would no longer be an option and I could be paralysed.

I researched this and although surprised that other than the carpal tunnel I had no pain, I did indeed suffer from many of the signs of myeolopathy which I had been putting down to growing older (now 56) and general wear and tear of an active body. So surgery was scheduled for early December. 

Given the collapse, several checks were made beforehand to ensure I was fit for surgery; ecg, pulmonary function, ecg & ultrasound and discussion with anaesthesiologist. As I have a slight allergy to cats and sometimes use a ventolin inhaler, I was put on a cortisone inhaler and was to be given a nebuliser along with the pre med. The anesthetic team would monitor me after GA was adminstered to ensure I was stable before surgery commenced. I would be kept under GA for 24 hours to allow my windpipe to recover from swelling to ensure I resumed breathing easliy. 

I was brought round c24 hours after entering theatre to find myself in the coma ward with all the consultants around me. It seems that depsite all the precautions and 30 mins monitoring after GA, the surgeon was about to make the incision when I went into bronchiospasm. I am told my blood pressure dropped to dangerously low but my heart kept trying. I suffered a minor cardio infraction, my lungs filled and oxygen fell to near zero. I am not yet sure how they saved me from this situation, but thankfully I am here to tell the tale. Needless to say, surgery was aborted and I spent the 24 hours on a ventilator until they brought me round.

The next 4 days in ICU were a slow, hard and shocking recovery both physically and emotionally. Lungs and heart were constantly monitored. I had 2 quite different skin reactions that were attended to by pulmonarist checking for DVT and dermatologist treating and trying to ascertain cause. One reaction was tears on my inner forearm that had white crusty edges. The one on my inner calf started with bruising and developed into large blisters after 3 days.

The consensus was massive allergic reaction, most likely linked to the first collapse. I was sent home to recover over the holiday season. By force majeur I am no longer leading an active life, but to minimise risk to my spinal cord I still have to wear a protective collar when out, am not to drive, nor exercise (I usually jog) and must take care while walking or on stairs.

Despite the trauma and in the case of the heart some minor irreparable damage, my pulmonary function test and stress ecg showed a return to pre theatre levels - even better in the case of the lungs. Steroid meds stopped and allergy tests were run last week. It seems that two of the drugs given at the first collapse were not in fact given again in the first hospital. One of these drugs was also in the GA mix, so it was a primary suspect as an allergen trigger.

Allergy testing was conducted last week. Such is the concern of the consulting team that even the subcutaneous skin tests were run in ICU, linked up to IV and all monitors. However, even an undiluted sample of the suspected trigger did not give a clear, positive result.

A Rheumatologust was called in to discuss the possibility of an auto immune disease, butblood tests for these have returned negative. Biopsies were taken in each of the areas of skin damage. By now my arm had healed although scarred. The blisters on my calf burst after the three weeks and now, 6 weeks later are black, dented areas surrounded by red, taught skin. The dermatologist advises this is necrosis and it is to be removed this week to give the good underlying skin a chance to heal.

Next steps are to review the biopsy results and then have a team meeting of all concerned to review findings and ongoing risk of any future medical intervention. Whatever the trigger or cause, it is certainly life threatening and at this time, the best I can hope for is that there is a way of managing the risk. So in the coming weeks I have to decide if the neck surgery is worth that risk.

I find myself much less informed about what living with this neck condition is like. What degenration can I expect, over what timescale? I have relatively no pain, does that mean it is yet to come, the carpal tunnel was indeed related or a coincidence? I drop things, bump into things, feel disconnected a lot - are these related and will get worse? WIll they get better if I have the op? What other treatments are out there? Is my surgeon's advice to have this surgery now while it is simple and safe still valid, given my as yet undiagnosed allergic condition?

I see many people here living with this neck condition in varying degrees. I would appreciate any personal views and links to information that are considered useful. This would help build my understanding and coming to a decision.

I live out of the UK and cannot fault the medical care and repsonse I have had so far, but the team are researching further afield and the need for a second opinion may be the immediate conclusion. Any ideas on where to seek this and with whom would also be appreciated - either for the collapses or the neck problem.

Many thanks and good health!

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  • Posted

    I also recently was diagnosed with the same after a very active lifestyle of many years.  Five months ago I was able to ride my road or mountain bike in the Pyrenees without dificulty, often making much younger cyclists tire.  Now I can barely walk much.  I was hospitalized in May due to walking instability and since then have gotten progressively worse.  I go to the gym daily to ride a stationary bike and work some machines.since on private healthcare here in Spain, my insurance does not pay for physical therapy for neurological issues but going to a Traumatologist tonight for such a referral.  I have been forbidden to ride a bicycle outside or to downhill ski much.  Soon I will be on State healthcare and things might be better.  Also have an appointment with a neurosurgeon soon to,take care of my co occurring carpal tunnel.
  • Posted

    Forgot to note that I am only 64 years old and my condition was caused from years of cycling and ladder falls
  • Posted

    Baliblue,

                 firstly I wish you the very best for the future,reading of your experience was like reading a horror story,how much can the human body stand.

  • Posted

    Having stenosis surgery in 12 days.  Will keep you posted
  • Posted

    I'm a retired respiratory therapist and I saw a similar reaction to antibiotics in a few patients...necrosis of the skin like a burn. Did they give you antibiotics in that stomach "cocktail" initially? Also, I've been starting to practice mindfulness. There is original pain and there is secondary pain. Original, or primary, pain - is nonnegotiable. But a great deal of pain is a result of our futile attempts to control that pain, For instance, trying to avoid it by alcohol, bad eating or drugs, Mindfulness training is not voodoo medicine. It's a discipline to accept the nonnegotiable discomfort, and embrace serenity. 
    • Posted

      Interesting concept....'primary pain is non-negotiable'.  I'm inclined to agree with that.  'Secondary pain',  or what happens to our perceptions of pain,  once pain has been instigated,  has crept to the forefront in the treatment theories...thus the attention given to mindset changing in chronic pain cases.  I think there's little doubt that secondary perceptions can be consciously manipulated,  but that still doesn't address the the primary pain.  The big question for me is....Why is there no perception of primary pain in deep sleep ?  Are we missing some simple,  too obvious to be noticed, dynamic regarding pain and sleep ?
    • Posted

      Thank you Gerry.   It may be relative - just as a football player or a soldier doesn't feel an injury in the heat of conflict. But at home, in the quiet and dark, when he or she tries to sleep, the pain will manifest. At that point in time the football player or soldier has a choice: do I choose to give my entire mental energy to this finite discomfort; or, do I choose to focus on something larger, a more expansive landscape, in order to regard this pain as a gnat rather than as a dragon. This is a skill I don't have, but would like to acquire.
    • Posted

      I'm not so sure that we are capable of voluntarily altering perceptions, once they've been created.   Too many emergent influences instinctively playing on the pain perception....memory, expectation, assumptions etc.  I'm more inclined towards understanding the reason for the initial pain percerption,  and if we can put some good understanding to that,  then I think we adapt better to toleration of the perception.  Pain doesn't feel like a 'for the good'  sensation,  it feels uncomfortable, unnatural, .....  so we fight the perception,  and want it gone.  Seems to me that such a reaction only helps to exaggerate the worst aspects of pain perception.  By applying some reasoning to the emergence of the initial perception,  by defining it in a way that makes sense,  I think we can achieve a sense of control over it....and that seems to lessen its 'negative' effects,  even when there's nothing to distract us from it.  Like you say,  we can't consciously  distract from it all the time,  so the only other way is to gain a better understanding of the purpose of pain,  so that we have less fear of it,  and don't feel we must medicate beyond an awareness of it all the time.
    • Posted

      Hi there and thanks for the suggestion - no antibiotics in the GA cocktail.

      The biopsy has been reviewed and confirmed as ulcerative dermatitis caused by a drug intolerance/sensitivity - non allergic as there are no antibodies present. It is assumed that this sensitivity caused my system to shut down. Tests are ongoing and I have started a thread in the Drug Allergy Forum - not quite the right place, but removes the diversion from this thread and is perhaps the most obvious 1st search for my issue.

      My team are looking into the possibility of surgery under acupuncture or hypnosis! I am sceptical, especially for something as lengthy and sensitive as the neck surgery, but it may be a way to manage an emergency in the meantime. The mind is a powerful thing and a positive attitude has certainly helped me through, so maybe it can be worked to reduce and manage pain. It will be interesting to see what they come up with!

      Good luck with your management strategy!

      Carol

  • Posted

    Pain management without drugs is very difficult.  I often think of Milton Erickson's struggle of living with a neuro generative disease and his use of disassociative self hypnosis to isolate from the pain.  To be honest, I still can't figure it out
    • Posted

      DId you have your surgery and how is recovery going? I hope your pain has been relieved and that it has all gone well.

      Carol

  • Posted

    i found out back in june I have cervical spine stenosis. narrowing is 6mm... not sure of what that actually means. But I am starting to have symptoms now. pinky and ring finger are numb have been since beginning of august. and leg numbness started yesterday. From under the knee to the foot. Kinda freaking me out a  bit. my dad had surgery last month for his, mine was inherited. I am not sure how bad 6mm is if anyone has info please please let me know. thank you in advance
    • Posted

      My neurosurgeon said my canal should me 15mm, but I think htis varies by person and so he expressed the reduction in % rather than absolute terms. Even then I am not sure how high the % of reduction has to be for the condition to be considered "bad". 

      If you have not already found it, there is a very good closed group on facebook called Cervical Spondylosis Support Group. Contributors often share CT pics and details for comparison and feedback.

      I have found this helpful as initial diagnosis is scary and the normal reaction is to get it fixed as quickly as posisble - which is the surgeon's job after all.  Learning how others cope with more severe situations has helped me understand and discuss options.

      Lots of luck!

      Carol

  • Posted

    Did you ever have surgery? I have recently had some breathing reactions to marcaine, lidocaine and even advil so I am afraid of C/S surgery because I am afraid I will have brating difficulties form the anesthesia.

    Just curious if you followed through with surgery and how you faired.

    • Posted

      Hi Chris - thanks for asking and thanks to everyone else following, commenting and sharing their experiences.

      I have not had the CS surgery as my "other condition" is still under investigation. Although not relevant to CS, I hope my update below helps you understand how to approach identifying any drug related issues (sorry it is another long one!). You should ask for a presurgery consultation and talk your concerns through with the anaesthetist, cardiologist and pulmonarist. They should then schedule tests and a pre op course of drugs/nebulisers to counteract anticipated reactions.

      My reactions were similar on both occasions, but not enough to be sure they were the same, or caused by the same thing. However suspicion fell on 2 drugs that were common to each case; brand names Elitan/Primperan and Zantac.

      I had a full day of sub cutaneous allergy testing for these drugs, all others administered and all materials I was subject to in theatre. They expected a severe reaction, so the tests were conducted in ICU starting with a dilution of 1/100,000. However, I did not react until we got to an undiluted dose. Even then it was minor and an undiluted dose can cause a skin reaction anyway – as it did in 2 volunteer control samples. So all the tests were inconclusive. I was told that there are no confirmed allergies to Elitan – I would be a first, but steer clear in future anway.

      I was advised to seek further opinions and consider an “underlying condition". So I consulted with specialists and renowned world experts throughout Europe, the UK and US. I was met with incredulity until the wad of medical reports was read through (usually at my cost), only to have them suggest redoing all the tests (at $1300 per hour in the US). Needless to say I rejected this approach.

      One UK consultant recommended that I have the anesthetist specify alternatives, retest and undergo surgery with this “safe list”. I checked and it turned out these had already been included in the 1st round of testing. Since these tests did not reveal the cause of my collapses, the implication was that it was something else; ie, the “underlying condition” and it would not be safe for me to proceed on basis of this consultant's recommendation.

      I finally found an allergist who explained the concerns in terms I understand.

      Something triggered my collapses and the reactions that then occurred. If it was something I was allergic to, then I would have produced antibodies which will respond again to the introduction of the trigger. There was no such reaction in the testing, therefore I am not allergic to any of the drugs or materials used.

      However, I could have an intolerance that causes my system to react to a trigger, meaning no production of antibodies. Therefore this trigger cannot be identified by allergy testing and we cannot assume a “safe list” of drugs.

      The responses in my system on both occasions are described as a sudden difference between the volume of blood and the capacity of my circulatory system. The body tries to address this by finding fluid and in so doing fills the lungs, small vessels burst, blood pressure drops, heart is overworked etc… The theory now is that it is a form of vasculitis.

      To identify the trigger, the biopsy slides have been sent to a specialist to review the cell activity at the time. The way forward will be determined by the outcome of this study.

      Meantime, I only undergo surgery if the need is equally as life threatening as another reaction. I continue with the tests and research so that I can safely have my appendix removed should it ever be necessary!

      Meanwhile, I have now recovered from the post theatre traumas, although it took many months to get back to full strength. I am fortunate that my neck condition causes myelopathy, not pain. So I can live with it.

      My neurosurgeon is still anxious that I have the surgery while the window is there, as my condition will worsen over time and render surgery impossible, as will sudden impact. I take a risk by climbing stairs.

      It could be months or years to get me to a time where surgery is considered safe and I cannot put my life on hold in the meantime. Having considered the impact of an accident (high; wheelchair bound) and the likelihood (low, provided I quit bungy jumping), I am now back to a sensibly active lifestyle. My balance is awful and I have taken 2 bad tumbles and adapted my approach accordingly. I drive, trail walk, jog and feel great physically and more importantly, mentally.

      I am following CS on this site and on the facebook page. The sharing is invaluable. I see much agony and anxiety in the sufferers and lack of understanding in the medical profession. I thank my stars that I have no pain, an understanding, experienced and local medical team, a supportive husband and family and a wealth of knowledge in our community.

      I wish us all luck and good health!

      Carol

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