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!