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
Benggo baliblue
Posted
having read your post,I sympathise with you I really do.I have had C.S. for over eighteen months now and at times it really drives me to despair,although some days are a lot better.
When I was first diagnosed with it I watched a surgical procedure on "u tube"and that really put me off surgery,my thoughts were that if anything went wrong I may be a lot worse than I am now and may not be mobile after the surgery.
Mind you,it all depends on how painful C.S. is for you.
I wish you every good will in the world and hope you enjoy life.
baliblue Benggo
Posted
Thanks so much for your reply and understanding. I too have watched the surgery and thought that I might come out worse than I went in. I have no pain so the need for surgery is quite sudden and somewhat surreal!
I do have many symptoms that are now being collectively described as early myeolopathy; I stumble a lot and tend to veer to the right when I walk, I bump into things as a result, even though I try to compensate. I cannot pick up small things or do anything that requires dexterity. It takes me ages to sew or manage a screw driver. I feel dizzy if I look up or down. I cannot concentrate or focus as I used too. My sleep is disturbed, I am tired despite many hours in bed. Neuroligical tests show that I cannot keep my fingers apart if the Dr pushes them together and I have little or no reflexes. All of this I put down to getting older, but apparently indicates that I will be paralysed over time. But how much time cannot be ascertained as we have no previous data to compare to. I could have been like this for many years without knowing it and it could take many more years than I can expect to live for it to result in paralysis. Unless I have an accident that twists the neck.
It all pales in comparison when I read about your pain and that of many others in this group. Yet you are all living life without surgery and the associated risks. Am I just lucky it is on offer within a matter of weeks (assuming the allergy issues are resolved), or should I in fact consider adpating as others do.
Thank you for the wishes and I hope the same for you.
icrazyhorse Benggo
Posted
Gerry_the_neck baliblue
Posted
Some story. At a guess I'd say that your allergy condition is the most pressing, considering the risks it poses. The C/S issue, is by nature, changeable. There are many known cases of C/S settling down to something manageable without any interventions, surgical or otherwise......so that should never be discounted as an option. With C/S surgery, the success rates are not overly encouraging, and the failures tend to be swept under the carpet because they shine a bad light on the overly promoted successes. Also, the successes tend to be short lived, with the problems returning later on. The way I see surgery is this....it creates a new load-bearing issue for the neck, and how the neck readjusts to that can go either way. The bone spurs are an indication that the cervical spine is already attempting to cater for any degeneration...they help to stabilise and protect the nerve roots, although that, in itself, arouses other reactive and referred issues. Surgery can disturb that fine balance, and no-one can predict the outcome without fully understanding all the dynamics involved. I would say that, if the symptoms aren't overwhelming, then the option for a wait and see programme is tenable, and, considering the risks, maybe the best option. They call it a degenerastive disease, and that's appropriate where there exists an underlying arthritic condition like OA or RA, but in itself, C/S can also be a 'regenerative' condition where the spine is continually attempting to correct its vulnerabilities.....so, in my book, the spine is conducting its own surgery over an extended time span. In instances where it seems the degeneration is too advanced, that's probably thye best time to consider surgical intervention.....I wouldn't be too sure about any claims that early surgery can pre-empt future problems.
baliblue Gerry_the_neck
Posted
Thanks for replying - I have read many of your posts and it looks as though you have been living with this for quite some time and have an amazing attitude to and respect for the wonders of the body and immune system in particular.
Sadly, my immune system seems to be awry at the moment and I have to deal with that separately. Given your argument, it suggests I have even more reason to defer surgery as an option as, if it can be managed such that I can have GA, there is no certainty about how it will respond to the demand to repair. So "wait and see" does seem to be reasonable and I will discuss this with the consulting team when we meet next week.
What adaptations are made in this period?
I am told I have to wear a collar and restrict activity. My husband has to drive me to work - luckily I can do most from home. We sail, ski, mountain bike, run, hike and live up a rough road that in itself presents the equivalent of driving on a roller coaster. I most likely have been doing all this with the same level of risk, but now that I am aware, it seems irresponsible to continue. But not engaging in these activites affects the lifestyle of my loved ones as much as me. Is it really necessary? Again, questions for my doctors, but I am keen to learn from you.
I am so aware that I have no pain anywhere. The most I get is jumpy legs and numbness in my left arm. I see most of you suffer greatly. It makes me wonder if my condition is being exaggerated, so I am grateful to you for helping me with benchmarks and realities.
Thank you for the time you take to help others.
baliblue Gerry_the_neck
Posted
I should have added that the compression on my spinal canal is 60-50% in the area of the 3 vertebrae. It is this that is driving the urgency for corrective action, as it is being presented to me as severe and increasing the potential for major damage to the spinal cord if I have a minor jolt. The "early surgery" is the option of doing it now while it is possible (which it won't be after the jolt), rather than the suggestion that it is early in the denegerative process and merely preventive.
Is 60-50% compression indeed severe enough to validate this view? If it is so bad, why do I have no pain? I can find very little beyond medical descriptions, so real experience is invaluable.
Thanks again.
Gerry_the_neck baliblue
Posted
Thanks for the compliments....I'll stick them on my virtual masntlepiece !
I faced a similar choice (Hobson's Choice !) about 4 years ago, although our conditions differ slightly in that my stenosis is at 5 and 6, and I also had foraminal issues where nerves exit spine. I decided against intervention of any sort, because I thought I knew what I was already dealing with, and didn't want to risk any new symptoms appearing. As it happened, by adjusting lifestyle to a more comfortable accommodation of the symptoms, particularly regarding altering sleep arrangements, I found that manageability of the symptoms increased accordingly. Might not be the same for everyone, but certainly always worth thinking about. It did mean regulating myself according to my own perceived needs rather than attempting to meet more normal expectations. I was in a position to do that.
With the stenosis, as you describe ....with no pain.....that is typical of C/S stenosis. There may be numbness in hand, tingling in hand, loss of power, even bowel and bladder issues, but no pain or serious neck stiffness. An impinged nerve root doesn't manifest pain, however the manner in which the neck adjusts to the threat can result in referred, radiated or associated issues which might be painful in themselves. The actual nerve root is extremely tough, and really it's only likely to get damaged in a serious trauma situation, like a car crash or such. However, there is the possibility that the vertebrae might collapse inwards gradually, and that can give rise to additional or changing responsive symptoms. Only a Neurosurgeon would be able to determine if that's likely, and even then with no certainty. So, that's always worth a second opinion before choosing,
I have to say that the lifestyle changes come with the condition, regardless, especially where there are painful symptoms to contend with. It may be a false luxury to assume that things can carry on as before, because that is one sure way of continuing aggravation of the spine/nerves and will most likely increase degenerative rates. I think you should be looking at ways to maintain the pain-free state you currently have, rather than wanting to test the problem to its limits. If you don't have an underlying condition like OA or RA etc, then degenerative rates are likely to be slow, just like normal wear and tear rates. Best to protect the neck from any sudden movements/shocks etc. Surgery won't necessarily improve on that, and surgery can be considered at any future stage if things deteriorate. Tghe whole C/S thing would seem to be about manageability whether there has been surgery, or not. And one of the big issues with C/S is that others don't relate to it well because they can't see the problem.....that's an area where we need to be strong and positive about our own needs despite the questioning looks.
You mention the 'jolting' vulnerability. Personally, i think that's a consultant's exaggeration to ecourage a committment to surgery....but, I'm not your consultant, and they are entitled to their opinion. IMO, it's only when the neck has already stiffened up that we need to be careful with sudden movements. If it's not displaying stiffness, there's probably no extra vulnerability than normal, and 'jolting' in general is never good for the neck, whether C/S or not. Obviously, with C/S, it makes sense not to over-tax the neck, because the repercussions can be severe, but always seemingly capoable of settling down after the event (even if that takes weeks or months). Aggravated phases of C/S come and go in direct relation to the perceivbed underlying threat. So, good manageability of the threats can affect the intensity of symptoms.
The reason I tend to argue against the surgery is because I'm aware that my C/S hasn't worsened over the last 4 years , and a lot of people seem to think that that's the only way it can go. Hope I've explained that without offending those who have had surgery, and might want to see it differently. I suppose it's only natural to want to support the positives from any given choice made.
Gerry
baliblue Gerry_the_neck
Posted
I am waiting on the biopsy results and have been having the dead tissue (necrosis) removed from my leg. The consultants review of my ability to have GA will take place mid Feb, so I cannot make a decision until then.
I am developing "bladder issues" that I had put down to old lady syndrome. The neurologist seems to think my neck damage is due to trauma rather than a degenerative condition and therefore it is less likely to return. He and the neurosurgeon are hopeful that my symptoms will be halted and in some cases improved.
The proposed surgery is decompression by removing the 3 herniated and bulging discs, shaving down the bone growth on the 3 vertebrae, putting in 3 replacement discs; 1 or 2 which swivel and the other(s) which fuse. This would be decided during the surgery determined by movements to check stability.
It is clear that even with this surgery, adaptations will have to be made as you rightly point out. Regardless of the decision and outcome, I do accept that I should slow down and adapt activities to my body's needs rather than expect to be able to keep pushing it to the limits.
So I will now wait and see if I can safely have GA and then get a further opinion from an independant neurologist and surgeon.
Thanks for the interest and I will update again when I have something relevant to share!
Carol
Gerry_the_neck baliblue
Posted
All the best
Gerry
Benggo Gerry_the_neck
Posted
I hadd an NHS hearing test,specsavers must be contracted out to do hearing tests,I have a hearing claim ongoing,and my solicitor wanted a copy of my hearing test,specsavers want £250 for the copy,but have lost my copy.
Profiteering or what?
donna22070 Gerry_the_neck
Posted
This reply from you has really helped me today. I am having a bad pain and dizzy day its all getting me down. You have helped. xxx
Thank you
Donna
Gerry_the_neck donna22070
Posted
Gerry
nancy0902 baliblue
Posted
Your diagnosis of your cervical spine sounds a lot like mine, with the exception of I have had a fusion of 4-5 in 2000. Sadly, it didn't take away my pain at all & due to the work I did which was in an acute hospital as a Data Analyst managing a software program called MIDAS, I was the system manger, plus patient satisfaction, employee sataisfaction, JCAHO readiness,charge compliance & all state & federal mandates, Risk, reporting to CEO, corporate by writing reports, analyzing data on power point etc. I was in charge of way too much & working at a computer up to 16 hours a day often with barely time for bathroom break really did me in. I went back to work physically at 4 weeks post op but IT set me up the day I got home from the hospital. I managed almost 7 years of this by having steroid injections epidural during a break then returning to my desk. Then using occasional narcotics at night so I could sleep. Then one morning I woke up & thought I was having a heart attack I was 49 years old felt like an elephant was sitting on my chest & could not lift my arms. So called work as I lived one block they sent someone to get me, I was hospitalized for pain control for 4 days, don't remember much but my pain was so severe it caused my BP to increase as they were afraid I was going to have a stoke. No Neurologist at our hospital and my doctor didn't know what she was doing. Sent me home no tests physical therapy, back to work two weeks later readmitted. This time I demanded an MRI & I could clearly see the buldge on my thoracic spine it was 6-7 mm. What they don't tell you in theory fusion sounds great if you don't work long hours on a computer as no matter what in time it will weaken below and above the fusion as it puts added stress on those areas. They used a bone from my hip and to this day I can't sleep on that side,
i had just received a huge promotion that I spent 20 years working towards. I am the sole provider of myself, thank god my son was in college on scholarship. I ended up at UCSF with two great doctors who said I would never work again, I have so many issues besides my cervical spine, thoracic spine, had lumbar surgery, at UCSF was diagnosed with peripheral Neuropathy, small fiber neuropathy, dystopia, DDD, just a long list of chronic disease. I asked the neurosurgeon about disc replacement & he said I am not doing it on a lady that isn't like a first responder like I was unworthy of it. I lost my job, identity, my friends, after 25 years they all forget about you. No one even asks me how ok feel. Not even my family.
If I could go back in time I would never do it as my pain has only increased.
But I am stuck on my decision going to go back to UCSF to see if their are any other options, driving anywhere is painful not only my head, neck but my legs feel like they are on fire everyday and at night when my grandkids spend the night they say I scream out to God asking him to take me home.
I am so depressed as I can't plan any events as I end up canceling.
I am hoping that something new will come out.
Thank you for sharing in detail your story. I wish you the best have you discussed physical therapy to build up muscles around your neck to protect your spine, I know you have no pain but acupuncture helped me but insurance won't pay.
I think my problems started when I was a child I feel out of a 15-20 foot tree and landed on the top of my head I had a lot of stitches, I was very active water & snow skiing, just living life at the best.
Now walking is very hard, had a wheelchair so when I go on those rare occasions with friends or family I can enjoy the day. Medicare took it away because I live alone! I should of lied but just have never been a liar,
god bless and let us know how you do. Nancy
baliblue nancy0902
Posted
The more I know and hear about this condition and the treatments, the more confusing the decision re surgery becomes. The outcome appears to be a russian roulette. I have discussed it over hours with my neurosurgeon, who has had his share of success and a few failures. Even a 2nd opinion does not seem helpful, as each surgeon has his own view.
I cannot imagine the pain - I suspect if I had that, my choice would be affected - anything to possibly relieve it.
The psychological impact of a successful and independent life crashing down is not addressed anywhere in the medical services that I have seen. I guess sites such as this try to fill that gap. Family and friends may not understand but fellow sufferers do. I hope that gives you some comfort and the strength to keep fighting it.
Sending you hugs,
Carol
nancy0902 baliblue
Posted
judith12064 nancy0902
Posted
Nancy, sounds like you're in the Bay Area. Go see Dr. Brian Andrews, with CPMC. He's a great neurosurgeon. Good luck.
tim84854 nancy0902
Posted
Hey Nancy you're one of the lucky ones. That waking up paralyzed, with the elephant on you're chest, well if you want to find out more about it, that is if this even reaches you, or if you are plagued by this horrifying experience, it's a condition called sleep paralysis. Before my first artificial disc was installed, I experienced episodes of this disorder every night. It turns out you didn't really wake up at all...well your brain woke up, but your body hadn't. A very specific type of sleep apnea sets in if your cervical blockage is severe enough. anyway, your brain, and your body tend to lose sync with each other as they cycle through the different stages of sleep. Your brain becomes alert, and it's very aware that it has no conscious control of it's body. So your brain deals with the situation with the best solution it knows...it heightens its mood to a state of SHEER TERROR, AND INTENSE PANIC!!! Releasing huge amounts adrenaline to your body to engage the fight, or flight response. Well anyway to help kick start the go-go juices, your brain, takes advantage of the fact it has full control of your bodies dreams... or more accurately, your nightmares, so it calls forth into being whatever antagonist you were most afraid of growing up, and nestles it into an extremely vivid, lucid nightmare... I was 30 years old, and quite convinced that every night i was being attacked by a giant, thick, and black cloudy mass of a Judeo-Christian Demon, who hovered over the foot of my bed, and then he'd swoop in and "get," me. Interesting part though is that people from different cultures actually dream different monsters, Arabic persons tend to see djinns holding them down, while Japanese people all tend to universally be attacked by what can best be described as an old hag, just a palish white, wet geriatric woman, who walks slowly around the foot of their bed then puts all of her weight on their chests. I know I had seen her too. America is generally divided about half see Biblical demons, the rest see tall skinny, grey creatures, with big black eyes who seem to be transported into their room via a bright light ..wink...wink. I was never lucky enough to be probed my self, and when it started I was unaware that I had a neurological train wreck situation going on. For a few months there, I, myself, as well as everyone who had witnessed my nightly seizure, were convinced I was being possessed. Took about a year for the colonus spacticity, myopathy, and paraphresia to get bad enough to be referred to a neuro. Been 6 years since my surgery. So about 5 years after they installed an artificial disc in C4-5, my symptoms all started reappearing. Hand curled up, the spastic gate, and oh god the pain! We got the whole gang back together!! We did it up right too, I have a 3mm herniation impinging on the chord above (C3-4) and a 5mm herniation below, (C5-6) I guess the plan is to rip all the old hardware out, put in brackets 3 times the size, and double down on the pins, and screws. Going back under the scalpel here in about 2 weeks, they are gonna do it through the front again. I just hope, against hope, that I regain the same amount of function that I did the first time. I'm not quite coping as well with the symptoms as I did 6 years ago. Hope I helped, figuring out the what, and why of my nightmares helped me immensely in coping with them. I Hope you got yourself fixed since your post. Surgery is definitely worth it, even if it doesn't stick, and they have to redo it later. You can't put a price on that much of an improvement to your quality of life.
m27878 Gerry_the_neck
Posted
Thank you for your post.
i liked this specific part and ideas :
”The bone spurs are an indication that the cervical spine is already attempting to cater for any degeneration...they help to stabilise and protect the nerve roots, although that, in itself, arouses other reactive and referred issues. Surgery can disturb that fine balance, and no-one can predict the outcome without fully understanding all the dynamics involved. I would say that, if the symptoms aren't overwhelming, then the option for a wait and see programme is tenable, and, considering the risks, maybe the best option. They call it a degenerastive disease, and that's appropriate where there exists an underlying arthritic condition like OA or RA, but in itself, C/S can also be a 'regenerative' condition where the spine is continually attempting to correct its vulnerabilities.....so, in my book, the spine is conducting its own surgery over an extended time span. ....”
where can I get more information about how neck and body creates its own balance when encountering neck multiple issues. Is there a book you said?
thanks in advance