Risk of surgery vs living with Cervical Spinal Stenosis

Posted , 37 users are following.

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!

5 likes, 63 replies

63 Replies

Prev Next
  • Posted

    Greetings...

    Just a quick comment for your consideration. After 2 near death experiences under general anesthesia, we now know what the problem was and take extreme measures to protect that it doesn't ever happen again. I found myself phyiscally in much the same predicament that you have there and truly needed the cervical fusions. In fact I really needed it years ago! The fear on my part was anesthesia. We now know that I and 2 of my children have a condition called malignant hyperthermia. I wonder if you might have had that checked. They finally arrived at that diagnosis by performing a muscle biopsy..I have heard that it can be determined by blood now but I have not confirmed that. I recently had the ACDF surgery as it is called here in the US and I am happy to report that I am able to walk unassisted now, my foggy brain is healing and I can feel and work my hands quite well. I am very pleased with what the surgery has done for me. I am only 58 years old and was always a very active individual. I am in rehab for therapy to help me get back to that happy state of health. Much luck and blessings to you.

    • Posted

      Victoria,

      Thank you so much for reading through and letting me know of your experience. I am so glad to hear you had a diagnosis and satisfactory outcome. It must be a relief for you and your family.

      I am seeing the doctors again this week and will tell them about your case. 

      I think I will start another forum on this topic as I did not find anything before, but clearly there are experiences to share. Just knowing someone in the same situation is a morale booster - as I have found on this CS forum.

      Thanks again and good health.

      Carol

    • Posted

      Hi again Victoria,

      My allergist has conducted more tests and now confirmed I have an intolerance and not an allergy, which makes diagnosis more complicated as you know! I have now been referred to a toxicology clinic at the University of Athens and they will consult with research centres in France & Switzerland. He is very interested in your diagnosis and has suggested it to the professor as a start point. My son had a reaction to GA many years ago and so a genetic cause is being seriously considered.

      I have started a thread under the Drug Allergy Forum as I have

      not found anything on non allergic reactions and would love to contiue the conversation with you there. Meantime, would you mind telling me more about the process and specialists who got you to diagnosis?

      Thanks so much!

      Carol

    • Posted

      hi Victoria, my name is terry i saw your post. And i was wondering how your are doing after your acdf surgery. I also need the same surgery on my 5/6 6/7 vertabra. my biggest symptoms are my imbalance and brain fog. Ive asked a couple of NS about brain fog and they say it isnt a symtom of CS. You stated that you had it and it was helped by the surgery. if you get a chance if i could corraspond with you in refernce to that and the surgery; it hopefully make me feel alittle better about having the surgery..  thanks  terry
  • Posted

    Greetings again Carol,

     

    I have been offline for a couple of days and just came across your response. I wanted to tell you that my mother..is who now almost 80 years old had a very bad experience during her hysterectomy and actually went into cardiac arrest. This was almost 50 years ago so there was never a thought as yo what might have caused it..it was just chalked up to a bad experience. She recently underwent a major surgery to repair her colon after it was injured during a routine colonoscopy. I made sure that the surgeon and his team knew that my family is in the registry for malignant hyperthermia..and to take that into consideration when they brought their anesthesiologist in. I hope that you find an answer for your situation. It may not seem like such a big deal to some..but genetically, it is extremely important to be sure that MH is not in your genetic history. If it is, then making sure that your anesthesiologist is onboard and prepared. They literally and figuratively hold you life in their hands. Much luck and blessings to you!

    🌻Victoria

  • Posted

    Hi ya, hope u doing well. Just I seen your story. R u in uk? Is operation was private? Where please? I have same problem even more and with other problem like type 1 diabetes, cardiac problem, neuropathy, high bp, unstable angina by 5 attacks, 7 orthopaedic dr and 2 neurosurgeon saying operation is 90% high risk. Possible you will get paralysis, not doing operation also in wheelchair and painful life, doing operation is risky and not doing is risky, which way can I go? I need some of your experience if you can advise me, I am in London, please help, thank you, Hullas Mehta
    • Posted

      Hi Mehta, So sorry I have only just seen your message as I do not use the site often. I have spent the last 18 months undergoing tests and am online now to post an update (see separate message). 

      I do face the risks you describe if I do nothing about my neck condition. I looked into some statistics and found a very low % of sufferers end up paralysed through the condition degenerating and even less as a result of a trauma. 

      I weighed this up against the risk of dying during surgery and decided to live with it for the time being at least.

      I have adpapted the nature and levels of activity. I hold things with 2 hands, take stairs more slowly etc. I do not have pain or other conditions that cause me concerns, so that makes the choice of approach easier for me.

      I am in Cyprus and was private - although none of this has been covered by my insurers as surgery was aborted and they could not categorise my condition. I tried doctors in the UK, France and US. Finally, a specialist in Athens, assisted by the team of doctors here were able to resolve my problem, advise and support me accordingly.

      Seek other opinions if you can and be as informed as possible about all your conditions so you can assess the relative risk for yourself and make decisions that suit your circumstances.

      Best of luck!

      Carol

       

  • Posted

    An update - at long last! Tests have concluded that I am allergic to a specific chemical component that is present on breakdown of certain injected drugs.

    In each of my 2 collapses (now described as a kind of anaphylactic shock), one of the drugs administered contained this chemical element, although it was a different drug on each occasion. The conclusion is an avoidance of all drugs with this chemical, but since the list cannot be definitve, the advice is to avoid all but emergency medication under already life threatening circumstances.

    The dilemma lies in the defintion of life threatening; an accident is obvious, but what about a tumour or indeed the CS that led to the planned surgery in the first place. Elective surgery needs to weighed up on a case by case basis and if I decide to go ahead, there are precautions that can be taken to reduce the risk, such as eliminating heart slowing drugs, using a temporary pacemaker and taking a super antihistamine type drug for several weeks beforehand.

    So I have chosen to monitor my neck condition and to live with it in the meantime. I have myelopathy rather than pain, so it may be an easier choice for me than for those who suffer constantly. Having looked into statistics, the risk of paralysis as a result of the condition worsening or though impact trauma is very low. However, I am adapting my lifestyle to remain fit and active yet minimise the risk. 

    Long may it last and good health to all!

  • Posted

    Hi Baliblue, have you looked into mast cell activation disorder???  
    • Posted

      Hi Cynthia and thanks for suggestion.

      My Dr in Athens spent many years research MAST cell disorders in the US and is considered a specialist in the area. You can see some of her papers on research gate under Dr Kalliopi Kontou Fili. She has discounted mastocytosis, but I do not recall a discussion about activation disorder. I will follow up with her. WIll let you know the outcome.

      Carol

    • Posted

      Cynthia, I had a long discussion with my doctor about MCAD/S. As medical procedures seem to trigger my reaction, she opted to test my blood for triptase first. This came back low. She has explained that this is just one of 4 indicators of MCAS or mastocytosis; at least 2 of which need to be positive for a diagnosis, although it is usually high in both cases. 

      However, she recognises that I am atypical and is considering how to prepare for a bone marrow extraction to test for the other factors.

      Sorry this is somewhat off CS topic, but I am grateful for the support.

      Carol

    • Posted

      Hi Baliblue, I have mcad and find when I get flares (which is often) it intensifies my cervical stenosis pain. This is because mast cell activation causes inflammation. Hope you have checked out the Mastocytosis Society website. Sounds like the reactions have been a huge barrier to your surgery so this would be very important to get on top of. Usually with mcad you take spevial precautions for surgery to make it safer. MCAS can be harder to diagnose than mastocytosis. Usually with mcas the tryptase level is normal. Cheers
  • Posted

    WOW-  What an ordeal.   I've got cervical stenosis and having surgery 11/29/16.  My doctor is in the top 25 in the country, but I still have concerns of the unknown.  You're smart to research.  I also have no pain, but have weakness and numbing, which I'm told could result in permanent nerve damage.  I think seeking a 2nd or even 3rd opinion is smart.  For what it's worth, the health care facilities in Minnesota are very good, if that's an option.   I wish you the best of luck and God bless-  prayers.  xoxoxox

    • Posted

      Thanks Mary and I wish you luck with your upcoming surgery. I am sure it will go well; my experience was very rare indeed.

      I had an MRI this week - 2 years since the last one. So we will see how the condition is going, bearing in mind it is not a linear progression. Tests to ensure safe surgery are ongoing and I am grateful for the insights and support shared here.

      Do let us know how it all goes for you.

      Carol

       

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.