Spinal stenosis is the narrowing of the spinal canal either from birth or aging. It can most often be seen in 60 year olds and most older adults will all have some form of spinal stenosis by the time they reach relatively old age. Disc herniation, fractures, tumors, infection and degeneration with the aging process can all be causes of stenosis in adults. Age changes everything when Acquired stenosis is as a result of serious accidents injuring the spine and then there are no age specifics attached.
When an abnormality causes a narrowing of a canal then the neurologic (nerve) structures become irritated or compressed. This leads to a variety of symptoms ranging from tingling, numbness, severe pain that is persistent, and weakness and pain with physical activity. It can and does lead to disability in cases where damage becomes to congested to attempt the risk of surgery or when normal treatment of injections fail.
As I said in my previous post, ‘Matt Roloff And Owning Disability’ there are two different kinds of Spinal Stenosis. Although fairly rare, Congenital Lumbar Stenosis appears at an early age in adults between 30 and 40. The Congenital form of spinal stenosis is seen in individuals who are born with a narrow spinal canal. In these individuals, even minimal changes in the structure of the spine brought on by age can cause severe spinal stenosis. With severe spinal stenosis problems with the bowels and bladder also exists.
Congenital spinal stenosis is largely a mysterious condition than can neither be predicted or prevented. The onset does not distinguish by sex, race, or ethnicity, and is not associated with any particular occupation or body type.
Acquired lumbar stenosis is more common and generally develops in persons in their 60′s or older. This form of stenosis is caused by progressive changes in different spinal elements, as I mentioned above. As people age, all these different elements sag or bulge and form arthritis that narrows the spinal canal.
In my own case, although I have been told that my condition is my own fault as well as a rare familial disorder (depending on which Doctor I talked to and at which age I was treated, by different Doctors, as my records did not always follow me). I was told much later, after the fact, in my later thirties of the destruction and changes taking place in my spine and that my spine was in serious condition.
I was born of a mother who experienced scoliosis as a child. She spent 4 years in a body cast. Some studies do show that off-spring of mothers with Scoliosis can and do sometimes present with spinal defects, as well.
I also over-worked my spine and was hospitalized both at the age of 28 when x-rays showed shadows that indicated arthritis, following an hour and 45 minutes of CPR in the field as an EMT. My back pain began at the age of 19, and I did not seek medical help as it improved with exercise and I grew up in a family where back aches were as common as headaches.
We didn’t go to the Doctor as children when we were in pain and I was even made to work following torn ligaments in my knee. When my Mother finally did accept I was in pain, scar tissuing had set in and they could do nothing about it at that point. However my mother was yelled at such loud of a volume that I heard everything he said through the wall and for a great length of time by the Doctor who saw me. He warned her, that I would have arthritis at an early age because I was made to walk on it.
At age 32, I presented with sciatica down both legs and with nerves pinched in 5 locations on both sides of the spine in the low spine, and at this time the Neurologist treating me said I had a herniated disc while the Orthopedist threw the diagnosis out.
Eventually I would burst or break off a partial piece of the disc in question and black out from the pain. Since I was hospitalized for a month and anxious to return to normalcy, I went home and resumed my normal activities and the disc which wasn’t suppose to be there, burst or broke,( I’m sure that is the lay person term). I was not given any explanation for the pain beyond psycho-somatic until 5 years later when I was told, “it is nothing but wear and tear arthritis normal for my age,” which was 37 years of age at the time. Hind sight tells me the Orthopedist who I was sent back to was covering for his own mistake as his partner had previously, a year before this, told me I had Spinal Stenosis as had my regular Doctor.
I grew up on a farm where physical labor is always a requirement beginning in early childhood and had spent 18 months both tearing down a house as well as helping rebuild it at the age of 32. I had been use to hard physical work right along side my brothers and did not know that the upper strength in a woman is never comparable to the muscle strength in men. Yes I should have known that but didn’t at the time. There was no special treatment when it came to work on the farm just because my twin and I were girls.
Because I had completed the work and was doing simple work for four months after the completion of our home, I never was certain my back problem did have anything to do with our remodel. My own case, as to if I had congenital stenosis or acquired stenosis probably will remain a mystery to myself, as both in my situation have distinct possibilities due to both behavior and genetics’
I just generally accept that my spinal stenosis and disability depends on which Doctor has said which diagnoses is correct, and have learned that very seldom will a doctor reverse his/her own diagnosis. I do understand that once a disc does burst or break off,(again the correct term fails me but means the same thing. There are three classifications of a disc and I believe when it breaks it is called sequestration), not much can be done and there are a number of difficulties not necessarily related to each other, with my back.
To me it doesn’t really matter so much now as it once did, as either way I am left with the results and thankful my children have not inherited the same nor would I tolerate their over-using their backs or bodies as children.
Although there are a number of treatments that do give a great deal of relief to many people who do suffer as I did,in my own case I found that they met with mixed results. I cannot express enough that what works for one person and is a great success does not always work for the next person.
I did eventually go the rhoute of spinal injections to find that they failed as their effectiveness never lasted longer than 10 days. I did have micro-neural surgery for stenosis on one side of my spine but the other side was too compacted by the time I switched Doctors, to even attempt surgery. I was told by the Dr. that did surgery, many years later, the injections more than likely failed because the damage done to my spine was too extensive. I went through my alcohol days of drinking, like the majority of pain sufferers do, but quit cold turkey before going on narcotics.
I refused to take narcotics until after my children married, knowing the mood changes they can cause and I had already experienced that with alcohol. Ultimately a Doctor did prescribe narcotics and I found some improvement while taking both hydrocone and morphine, but when their effectiveness wore off, and I was only treating the addiction, I quit on my own, again cold turkey, rather than suffer the results often occurred by higher doses.
Most people do not realize that addiction from narcotic pain pills even when prescribed can begin within 5 days of treatment and I was on the hydrocodone at double normal dose for a period of 7 years and combined with morphine for 3 years. Because getting off the narcotics without any help was such a horrific experience, I refuse to take any narcotics now.
I may not have been able to stop the deterioration of my spine but I still have hopes of preventing my brain from deteriorating due to narcotics. For 45 years I did my best to assume responsibility and be there for my loved ones but the beauty of finally reaching the age that spinal stenosis is normal for most of us is; at the age of 67 I can finally take it easy and enjoy my retirement with my husband. When winter comes we will head south and play, again.
Acquired spinal stenosis is very prevalent on my father’s side of the family with Osteo-arthritis in both my parents families. I had both a great uncle on my mother’s side as well as several on my father’s side who were disabled by arthritis. There are also those who did abuse morphine and narcotics to the point they became mentally imbalanced and impaired. Spinal stenosis is very common in little people at earlier ages but not so common in normal height people under normal circumstances.
I write this, so those current today and future generations do not have to spend the amount of time that I did when I was left without any explanations and questioning my own sanity, as well as for all young adults who do not feel they are getting a qualified explanation as to why they are experiencing ambulatory pain or any pain for that matter. Before it gets really bad and persist, I highly reccomend that you see all the Doctors you need to see before you do feel you do get the explanation you need. Once pain becomes chronic it is very difficult if not impossible to treat.
I was under medical care when both ambulatory pain and pain that caused me to blackout did happen and still carry resentment that I did not understand the seriousness of back pain, or persist harder in any Doctor explaining what was happening to me that made an ounce of sense or recognize when I was being put off, or have an accurate diagnosis at a time when I might have been helped.
What would become perhaps the hardest problem of anything else that I had to deal with, minus the persistent severe pain, was either the inability or unwillingness of the Doctors that I dealt with to answer my questions. Today with the internet we can find many of our own answers that did not exist during the time I was left entirely in the dark to fend for myself, unless it is yet unknown by the medical profession. Well intentioned family and friends who force their own, “so called wisdom,” on us are only secondary to the confusion that we are left in when the medical profession either refuses to share information they have or can’t say “I don’t Know.”
It some cases questions were simply brushed off even while they treated me for a known serious back problem. When I complained about needing help and being in pain a couple of the Doctors either told me to stay on treatment that was causing symptoms of there own, or simply wrote in my records and refused to look at me while they said nothing or turned on their heels and walked out, another Doctor literally threw a bag of anti-depressants at me before he turned on his heels and walked out, and they weren’t even the worse that I had to deal with.
The truth is that medicine cannot help everyone but unless we try all options available to us, we run the risk of suffering needlessly. My experiences may be totally different from those who have the same conditions that I had because our bodies do not respond in the same manner to identical treatments. I think the majority of us would feel better if we were told by a Doctor that not all conditions are treatable. Sometimes the patient does need to accept the cure of what is wrong with them lies in our own behavior and as such when we change the behavior we will get better.
In my own case,when I accepted for myself that I had tried what was available with limited to negative success, it was time that I took control over my own condition and accepted it was simply up to me to make the best of what I could do for myself. I was smart enough to stay away from those who make adjustments to the spine,or chiropractors knowing that any kind of adjustment could cause a spur to injure my spinal cord and lead to paralysis and other complications. Ice packs and heating pads can often relieve more pain than can narcotics. Slowing down what was my normal activities and accepting disability became my best treatment. After that I learned, “If it hurts, stop or find another way to do the same.
There are great Doctors, good Doctors, and there are pathetic Doctors, but only three out of about 13 that I saw in total, who I could recommend and do often. I’m sure they are all good in their fields when they can make a difference in a person’s life, and they all do make a difference in the lives of others.The one that I resent the most was considered the best in the State before he got caught prescribing himself too many drugs and got disciplined for it, soon after treating me. I’m sure as an Orthopedist surgeon he did save a great deal of pain in others, I just don’t like being lied to by anyone.
The Best Doctor is always the Doctor each of us have the most confidence in as a Doctor, and who does his homework and remembers our condition and is not afraid to discuss the differences we are experiencing. I have never had a Doctor ask me how my back problems started after the initial diagnosis, other than the Doctor who did surgery on me. He was leaving to go on vacation the next day and delayed it until after he did surgery on me. A doctor can be 98% of any cure, because many times all a patient really needs in order to get better is time, and a Doctor they believe in. Doctors are no different from any other human being as either we connect with them or we don’t.
The better they are sometimes the worse their bedside manner is as when they are great they often are over-worked. They don’t bother me nearly as bad as those who put their own egos before the diagnoses or refuse to say they don’t know when truly they don’t or withhold information that I pay for in order to know the results.
I have always believed if I was a man seeing male Doctors, which they all were themselves, I would have been treated much differently, even though I understand they get frustrated too when they can’t help a patient. If I asked for information or complained too much about my back or shoulder that is greatly affected by the stenosis in my neck, the standard practice was to change the subject and order a mammogram or a pap smear to be scheduled.
That would ultimately take on a whole life of its own with diagnoses and treatment becoming totally disgraceful by the treatment of me by two doctors. I will spare the details as that part of my anatomy is not affected by problems of the spine and that is what this post is about along with my going through a history of unanswered questions.
I do know, intellectually, it probably wouldn’t have mattered anyway if the original Orthopedist had of accepted the Neurologist’s finding of a herniated disc instead of throwing it out and it could have been much worse if the spinal stenosis was primary to the herniated disc in the first place. At this point I doubt I ever find out which came first the herniated disc that blew or the spinal stenosis.
Many more problems with many other discs bulging and herniating, followed by bone on bone and wearing down of the vertebrae, as well as spinal stenosis in my neck did follow my initial problems with the original herniated disc and the Lumbar stenosis. While spinal stenosis in the lumbar or low back region is most common with older adults it can also appear in the neck or right below the neck. Many Doctors who practice a lifetime will never see a patient like myself who has spinal stenosis in both the low back and neck.
If Spinal stenosis was a primary cause and they had done a spinal infusion surgery and my back continued to drop as it has I could have possibly have been worse off. On the other hand if the herniated disc that burst, because I was told I did not have a disc problem so therefor didn’t know it burst, and it was the cause of everything else that followed perhaps I did have a chance through surgery. Through my own experiences and self- education I eventually understood, years later, when I blacked out that I blew the disc.
I was experiencing seizures, dizzy spells and sciatica in both legs but it was all being explained away by Doctors and the Physical therapist, so it was just more of the same to me at the time, when I did blackout. I was told I was getting up too fast when I could hardly move or sit up or they questioned if I had a back problem at all. Ultimately it led to treating me with prednisone and anti-depressants and telling me it was psycho-somatic but they knew it hurt. Back surgery itself comes with its own complications and many different types of back surgeries have been attempted with mixed results. Men reverse the table over women in these endeavors, and often pay the higher price for back surgeries that fail, since they are viewed as being less emotional than women, so I don’t know,myself, if I would have been better or worse off either way.
I have always been glad that they did nothing to worsen my back after the initial assault on it, by trying a surgery that would most certainly have failed later, and recognize their Hippocratic Oath as Doctors demands they do no harm. It is questionable if with holding information the patient is entitled to does not do more harm than good. Some people want to hear the truth where others wish to remain in denial. I was so clear that I needed answers in the beginning but did eventually quit asking as I knew it fruitless to even try, and by then the damage was done. I pretty much forget about the resentment until I hear some kind of foolish statement made.
My resentment certainly does not control my life since I do not hold grudges or carry a desire to get even and understand Doctors are human and we all do have our own share of win and loss records, but I’m not willing to deny that I will carry a tinge of resentment until I die, either.
To this day the only explanation I have ever gotten by the medical profession excludes all Doctors as to what spinal stenosis is, or what I was dealing with, or if spinal stenosis is primary or secondary to the herniated disc. I don’t even get call backs from Doctors on my MRI results after I have them ran, other than from the Dr. who did surgery.
Sometimes an office staff would call but mainly I had to call several times just to talk to a nurse. At this time in my life it became clear to me that any tests done on my back were simply ran to update my records as little to nothing changed in my treatment. When I asked questions I got a lot of, “I haven’t got a report back yet’, “the report was very sketchy”, or “the results are on the Doctor’s desk and he hasn’t read it yet.” They shared any other tests I had ran but never on my back.
When I called the Dr., who ran the cat scan initially and left the truth out about his own error, to ask him what my spinal stenosis was, a nurse told me he was busy but she could tell me it was calcium in the vertebra which really was the same as telling me nothing, since all arthritis of the spine involves calcium. The biggest difference is if it is outside or inside the spine. I actually appeared at the home of another Dr. and demanded knowing the truth to only be told to talk to the Dr. who refused to tell me the truth or to return my call.
Needless to say even I knew it was time to switch my entire team of Doctors, at this point, and it led me to a Doctor who is on my list of three and to the surgeon who will always remain number 1. Any questions I have, he answers, if I am smart enough to ask the right one and he has called me, personally himself, as late as 10:30 at night to discuss the results of testing I’ve had done. He doesn’t volunteer any information but he doesn’t leave me hanging with unanswered questions either.
I don’t ask him if my spinal stenosis is secondary or primary to the herniated disc because I know since he was not my Doctor of record he couldn’t nor would he be able to answer it. The damage is done and that won’t ever change nor will it give me back my young adult years. I feel Blessed that I refused to give up and have a long-lasting marriage, raised successful children, and have bright grandchildren, all of whom I love dearly.
It isn’t that I am a Pollyanna but more of a realist. I accept the fact that Doctors, like the general population do make mistakes. Some of them may think they are infallible but they are no different from the rest of us. If it didn’t happen to me it could have happened to some one else less equipped to deal with it and we always had great insurance coverage.
When ever it gets really difficult, I often ask, “If not me then who?” and feel greatly relieved that my loved ones have not had to go through it as I have. My thinking wasn’t always so generous initially, but now that I made it through it, I’m pretty much grateful. I doubt I could have ever learned gratitude to the depth that I have, if I hadn’t of gone through it. It is true, “what doesn’t kill us makes us stronger.” Since I wouldn’t wish it on my worse enemy, however, I am writing this post in hopes of sparing someone else and to tell you how important it is to take it easy with your backs, when they are hurting. Walking not lifting is the best exercise of all.
It was the responsibility of those who I dealt with in the beginning to be honest with me and when I was aggressively seeking answers to have had the decency to just sit down and explain to me what the effects of spinal stenosis would consist of, what it actually involves, and what happened that my back deteriorated so quickly that it was too late to do anything about it before I even celebrated my 40th birthday.
Through educating myself over the years I no longer need an explanation as I pretty well know by now what happened and why I am disabled. I had at my own disposal the symptoms that followed and I could track each with the knowledge that existed in Medicine at the time.
The after facts of being ignored and lied to however still remain and Instead of my questions being answered they either went ignored or I was left to research on my own in order to determine why I felt the pain I did and what led to the results I was dealing with, over the years. Even I know, I did receive pathetic treatment because the Doctors got their egos in the way and refused to say at least, “we don’t know”, or refer me to references to check out for myself.
As I mentioned previously, at that time there was very little information on the internet about spinal stenosis. I had symptoms effecting my entire body due to the drugs that often flared up other body systems as well as my spine and I had to discover which was spinal stenosis and which was drug related since no one ever did tell me my entire body could be systematic of the injury to the spine.
There certainly was never any listing of Congenital stenosis at the time I was researching or much of any explanation of someone my age having so many problems. I almost hoped it was mental because I always had the attitude, “Id rather be dead than in a wheelchair,” and if it was mental I had more hope than I had if it was physical, was my thinking at the time although I have reversed the same by now.
When I looked up stenosis it spoke about blockage of the heart. Spinal Stenosis was very scarce to non- existent and when I did find something it was pretty much the same as I got from the nurse and one sentence. Our local library had nothing so I bought books along with a medical dictionary and started looking. Today it is quite easy to gain information on spinal stenosis on the internet.
I end this then by again stressing that what I suffered at a young age is more of a rarity in backs than a regular thing but I also want to stress that care of a back is extremely important as are the answers to what we can do to help prevent further damage is, when we are fortunate enough to get the answers we need. If nothing else, remember to always lift with the knees and not the back and if it is heavy let a lift do the work.
Most back pain, especially in someone as young as I was, is only because mankind began life on all fours before they evolved to the upright position and as a result most backaches are because the human back was not designed for the upright position. (I Know this Science drives those who throw Evolution out– mad:) The majority of back pain can be easily treated and does not require surgery. It is important to listen to our own bodies because pain is a warning sign, and I write this as a reminder for those of you who ignore it, as I did.
For all others who are dealing with a future that may or may not lead to physical disability, I hope you read my long post entitled “Matt Roloff And Owning Disability,” and in doing so you can gain a nugget or two of inspiration or perhaps learn from my mistakes, when my own common sense failed me.
I had no intentions of making this or my other post on owning disability as personal as I have, but if someone else recognizes themselves in my behavior or treatment, and I can help you avoid the pitfalls I fell into with self-doubts, I gladly share my own personal story. Have a good day or do something that works for you if the rest of the day sucks.