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
nancy0902 baliblue
Posted
You did not mention your age. I had a cervical fusion c6-7 15 years ago and I have not received any pain relief. I then had a mortons neuroma removed from my toe 6 years later and it caused me to develop peripheral neuropathy which is extremely painful. The surgeon never warned me that when you have a fusion it weakens the areas below and above the fusion. Several years after the fusion I woke up and thought I was having a heart attack as it felt like an elephant was sitting on my chest they treated the pain and I stayed for two days, then two weeks later was back this time I had an MRI CT scan and I had disc bulging on T1-2. I was told the first surgery would improve my life so I could ski and enjoy an active life instead it has been a living hell. About six months ago I noticed severe neck, shoulder and extreme headaches. So I had another MRI which shows that c5-6 is bulging and I have severe spinal stenosis. I saw the neurosurgeon who I did not like. I asked him about the new technologies in disc replacement and he said basically I am not worth it at 62! Even though my insurance covers it! That they only do it for fireman and police. Well I had to quit or retire from my job 8 years ago because of the nerve damage. I even was in a wheelchair for almost a year. So my advice is don't do it. It just leads you down a road of more problems! I feel I have no life, I can barely stand the pain to just drive 5 miles. I am single and have no one to help me but I manage the best I can. Please look into other solutions, get another opinion. But once you fuse one area the rest will continue to deteriorate and there is no turning back. I can't remember a day without pain, if I could save one person from having this surgery it will make me feel like I helped someone not to live a life of pain and suffering. But ultimately it is your choice!
baliblue nancy0902
Posted
My neurosurgeon plans to use replacement discs rather than fusion. The top2 will be swivel type and the 3rd either the same or fixed; he will decide during the op. Hopefully that will reduce the risks you have experienced.
It will be Jan/Feb now before the doctors meet up to review my latest MRI and discuss risk of not doing the op vs risk of anaesthesia due to my allergy to chemicals in the drugs that need to be used.
To be honest, I prefer not to have the surgery as I am managing quite well, but I am also conscious of the impact on my family if my condition worsens either way.
It is a dilemma - I just have to stay informed and discuss regularly with my doctors and family.
Please stay strong and keep sharing.
xxxx
baliblue nancy0902
Posted
Forgot to say I will be 58 next month. This does not seem to be an issue with my doctors.
Carol
nancy0902 baliblue
Posted
And it shouldn't unless we are in our 80's the Surgeon who made the crude remark to me looked to be very close to my age. I have taken care of my self, I still wear almost the same size clothes as I did as a teen, I dress stylish but not ridiculous and my life was taken away from me due to the surgery I had. If a man can run for President in his 70's I didn't appreciate his comment like 62 is one foot in the grave. I have grandkids in college and people always think they are my kids not grandkids. He just had a big ego. I think he also got mad because I said before I would allow anyone to do surgery on me I would check his clinical outcomes like infection rates, lawsuits, patient satisfaction so I think he took that the wrong way. I feel like would you buy a new car without researching the ratings and reviews. When you are talking about something that has the potential of taking away your life or you ending up being worse off I think you would be irresponsible to not check the doctors ratings! 58 is young! I would use surgery as the last option, I was too trusting since I worked with this surgeon and I should of taken more time to research the procedure and all the side effects. That is why I love these groups as we the patients can share our experiences with other patients as doctors do not advertise their failures. To be fair they are human and I know most do there very best but I have seen some really botched surgeries and some bad doctors through out my career. So just make sure you really think and discuss the risks then talk to people who went through it. You seem to be very well versed on your condition and I am sure you will make a good decision that works for you. I didn't want to retiree that young as I just had gotten to the top of my field. Plus I miss my job and the great people I worked with.
nancy0902 baliblue
Posted
robin28782 baliblue
Posted
I had surgery for cervical spinal stenosis in the 1990s and symptoms are coming back recently. I did suffer pain, discogenic pain felt in the neck, between shoulder blades and down arms. This time no such pain though I do get pain in a hip which may or may not be related.
After surgery, raw strength started to return in days but it took 2 years for the pain to settle and almost 10 years for full coordination and good quality strength to return for running. My neurosurgeon stopped me doing kayaking, orienteering, tennis, cycling, and so on but did allow me to take up running which I did and have enjoyed greatly.
With the improvements in techniques and the artifical disc implants I think you have a great chance of a better life and less likelihood of relapse. If I had been in your position with the chance of life ending allergy I would have taken the risk back then. I was severely crippled, couldn't write or type (or earn any income) and was watching my family suffer as a result.
Your carpal tunnel symptoms are interesting. In my case I suffered tennis elbow and golfers elbow which went on for years but did eventually settle after surgery. I assume the problem was via the autonomic nerves.
Hope all goes well if you have surgery or you manage to keep enjoying life if you don't.
maureen29517 baliblue
Posted
Hello Baliblue,
I am in the USA and went out on Workers Comp over a year ago. I was diagnosed with degenerative changes via MRI in disks C-3 - C-4 through C5 - C6.
I did data entry for 20 years which likely aggravated or caused the bulging disks in my neck. I had shoulder, neck and arm, finger tingling and pain which was very painful.
My doctor gave me an epideral steroid injection into my neck two days ago and most of my symptoms are gone temporarily until the next injection so look into that for any of you with these problems. My doctor says it should relieve discomfort for 3 - 12 months so I will have another one when needed. Didn't hurt much at all!
baliblue maureen29517
Posted
Glad the injections have worked for you - anything to relieve the pain must be worthwhile trying and I hope it lasts as long as possible. I will certainly consider it if my situation changes.
So far, no reason to take the risk of surgery.
Take care!
Carol
lupe73843 baliblue
Posted
Hello,
I am 53 and was told after doing a random MRI that instead of having Carpel Tunnel for almost a year now I actually have severe cervical stenosis with cord compression. I was in total shock and alarmed. I was told by my primary Doctor that I may need surgery and sent me the next day to a Orthopedic Surgeon whom confirmed the need for surgery. I have worked in a clerical position for 30 years and was told that my poor posture while sitting and repetitive neck bending was a contributing factor to my degenerative condition by my primary Dr. Although the specialist could not confirm this and therefore my surgery was denied by Workers Comp Insurance. I have been under a tremendous amount of stress and anxiety knowing that possibly the Chiropractic care I was given could have left me paralyzed from not knowing what my actual diagnosis was prior to MRI. I have tingling and numbness in right arm as well as pain in my ankles, knees and wrists. In my neck and shoulders I feel tightness after sitting for a prolonged period. I have know then experience a sharp pain in my lower right hip for a month now. I am currently having PT to that area but I'm thinking it the sciatica and may be tied to my stenosis. The insurance of course denied request for MRI to that area until I try PT first. I was actively going to the gym and used to wear heels but when my ankle gave out and I fell that was it, no more heels. I feel that I have slowed down used to walk at a fast pace, weight gain, I feel depressed and cannot sleep not to mention short term memory.I'm uncertain if a Orthopedic Surgeon is the correct specialist or if I should be consulting with a Nuero Surgeon. I'm in need of guidance and if I should seek legal representation for my Workers Compensation case
baliblue lupe73843
Posted
Hi there - sorry to hear your situation. I do understand the shock of diagnosis, as mine too was found whilst looking for something else. A lot of symptoms then fell into place and at least I had a reason.
I am not best placed to advise you as I have not had the surgery due to the allergic reaction to anaesthetic I describe in this thread.
I can share what I have learned a little over the last 2 1/2 years and hope it gives you a bit of guidance.....
I was referred to a neurosurgeon. Therein lies a bit of the dilemma - surgeons want to operate! Mine still does despite my risks of undergoing the surgery! I get 6 monthly MRIs and he points out how much more pressure there is on my spinal cord and that the opportunity for surgery is closing at the same pace.
My neurosurgeon is excellent, I am a private patient (but he has not charged anything since the first consultation as he is on this journey with me!). He does understand and support my choice for now.
I was told I was degenerating fast. I have numbness, more in the right side, awkward walk, heavy legs, clumsiness, loss of fine motor skills, dizziness and poor balance.
I looked at the stats on reports available on the myelopathy website.
The number of people diagnosed who become paralysed is a very small percentage. Weighed against the very high risk that I will die under anaesthetic, my choice remains obvious for now.
The number of people who had surgery who either did not improve or even got worse seemed quite high. So for me, why risk surgery when I may not even get better should I survive it.
My surgeon advised that I should live life carefully. He suggested I stop driving never mind sports and that I wear a philadelphia hard collar even when being driven. In the stats report, the number of people who were paralysed through sudden trauma was less than 0.2%. I reckon everyone in my family lives with that level of risk just by crossing the road. So again, relative to my risks in surgery, my choice seems obvious.
I do recognise the uniqueness of my situation though and that risk is relative to our individual circumstances. So please do not think I am advocating my approach to decision making!
All that said, having decided to live with this, certain adaptations had to be made.
I drive an automatic - although I do still take the manual sports car out on sunny days with the lid down!
I drive carefully, avoid busy and unknown routes and driving in the dark.
I work full time on a computer, but have an ergonomic setup in my home office and I am careful to go for a break every hour.
I am sensibly active - I don't climb ladders, or chairs to do the cleaning. I jog on a running machine and walk outside, instead of the regular 5k runs I used to do.
I have put on weight; I try not to eat so much and have more or less given up alcohol.
I try to do as much normal activity as I can - but I do find conversations in large noisy groups very difficult.
I have been low, but I don't think I hit depression. Living with it and the support of family and friends has helped a lot.
My husband and I have discussed the worst case. That meant thinking about what he would need to be in place should my circumstances suddenly change. We made financial plans and home adaptations accordingly.
So now we monitor it. I have found it is easy to attribute every ageing ache and pain to the neck condition and again the surgeon is quick to agree. Where at first I did not have pain, I now get it at night in my right arm and shoulder and cannot properly bend that elbow. My husband has arthritis which is very similar and so mine could be just that. After what I went through post aborted surgery, I am just happy to be growing old!
You are still in the early stages post diagnosis and finding your way through the condition, medical services and options available. It is a very confusing and disturbing time. I hope I have helped a little and that others on here can help more.
Good luck!
Carol
nancy0902 baliblue
Posted
I did not know that dying under anesthesia was a big risk for cervical fusion. I hadn't even thought of that. I don't wear a collar, but seeing a new Neurologist tomorrow. She is a woman and her patient sataisfation scores are great, she spends a lot of time with you. My current neurologist is just now interested in treating symptoms not doing much else. So I am seeing a new one.
baliblue nancy0902
Posted
Hi Nancy, to clarify - the risk of dying in this surgery is no more than any other kind of surgery.
However, if you go back through this thread, you will see my story. It seems I have a rare allergy to injected medication which came to light as I was put under for the neck surgery. This means the risk for me is very high indeed. That is the basis of my decision not to attempt it again.
Therefore my contribution on this site focuses on living with the neck condition through force majeure.
Hope this puts your (and other's) mind at rest!
Carol
Hope t
nancy0902 baliblue
Posted
baliblue
Posted
Wow! 3 years ago and I am seeing recent comments. Thanks everyone for following!
I thought an update might be of interest.
I have not had the surgery as my reaction to the anaesthetic has now been checked in 3 continents, by 19 doctors and is finally considered to be Mast Cell Activation Disorder. It cannot be proven until bone marrow is taken and as this itself involves surgery, I am advised against it. Indeed, I am advised against any surgery unless the need is as life threatening as the anaesthetic.
I am registered with Medic Alert and generally ignore that side of things as there is little that can be done to correct it.
Meanwhile I have had to learn to live with the CS and myelopathy. Initially, I followed the neurosurgeon's advice to "wrap myself in cotton wool"; not drive, wear a Philadelphia collar when being driven etc. I put on weight and felt miserable. As it became clear that I could not have corrective surgery, I decided to get on with life as though I did not have the condition.
I go to the gym 4 times per week, where a personal trainer has researched my needs and tailored a program accordingly. A lot of the wobbles I feel are perception rather than reality. He is retraining the central nervous system and generally building my strength and functional movement. Videos convince me that the balance issues I feel are not real, or as severe as I perceive them to be. My confidence is coming back; I can walk up and down stairs again, go hiking and even jog outside on uneven surfaces. I am fitter, slowly losing the excess weight, able to drive, lift weights, carry heavy objects, do housework and maintenance, travel etc...
Of course, this is possible for me as I only have numbness - I thankfully do not have pain.
I have researched the risk of sudden or degenerative paralysis and the statistics I have seen suggest that less than 1% of CS sufferers end up in wheelchairs. I can live with that level risk. I am supported in this decision by everyone else who would be affected by a sudden change in my circumstances. We have adapted our home to accommodate future needs. I had a MRI in 2016 and am due another this year. This is mainly to keep my neurosurgeon happy that we are monitoring the progress of compression.
So all is good - I realise how fortunate I am, as my approach will not work for most. I hope your medical and personal support systems find a way forward for each of you.
Carol
xxxx