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As I mentioned on the home page, I have had chronic
spine pain for 27 years as of 2004. When I started developing the first signs of chronic pain syndrome, I was newly
married and ready to begin my life as a working wife, with hopes for eventually having children. My back began to "go
out" on me periodically. By using the term "going out" I mean it just started to lock up or freeze up. I would
first get this very numbing and cold sensation in both of my lower legs and the sensation would travel up to my back slowly.
By the time this sensation reached my lower back, however, the cold numbness in my legs would turn into excruciating pain
in my lower spine and my muscles would "lock-up". I would have these episodes that would last for up to twelve
hours at a time and I would have to lie down during the entire time, and then just as fast as this "attack" began,
it would be over and I would experience no pain. I remember the first time this happened, Michael--my husband at this
time-- and I were getting ready to welcome both of our families to Christmas Day Dinner. What brought this attack on for the
very first time that day was that I bent over the sink to brush my teeth and started feeling that sickening, heavy sensation
in both of my legs, that also got very cold and numb. I yelled for Michael that something was wrong with me and I felt like
I was going to pass out. He helped me to our bed where I just lay there for a few hours in excruciating pain. This gradually
began to lessen and I felt sore the rest of the day, but was able to go ahead with our Christmas dinner! Over a relatively
short period of time, I began to notice a burning pain in my right hip that also became chronic. I dismissed this
pain as a result of fatigue or the stress of newly married life, with both of us working and trying to establish our budding
separate careers. I waited an entire year before ever going to the doctor. I would never advise anyone to wait
this long before seeking treatment. By the time I found myself in the first orthopaedic surgeon's office, I was not
able to stand up straight. After admitting me to the hospital for two weeks to undergo traction and a myelogram, in
1979 I was diagnosed with a herniated disc. I was 25 years old!! Young, naive and wanting to
get rid of this sudden invader into my life called PAIN and restore my life back to normalcy, I agreed to undergo a laminectomy
and fusion at L5/S1. Looking back on this now, I believe I made a mistake in agreeing to undergo a major spine
operation at such a young age because this procedure set into motion a "domino" effect of level after level of my spine developing
everything from spinal stenosis to a fractured facet, as well as instability/spinal compression.
After the laminectomy and fusion in February, 1979,
I had a "redo" fusion in January, 1981 because my orthopaedic surgeon informed me that the previous fusion in 1979 had
not "taken" (meaning the hip bone he had placed in there had not "fused" together to form a reinforcing/stabilizing bone for
the two vertabrae). This 1981 fusion was successful in that it did"take" but I remained in incredible
pain. In 1982 I was referred to Johns Hopkins and visited with the head of neurosurgery in May of that year
for the very first time. This neurosurgeon's primary interest was chronic, intractable pain. From 1982-1987,
I waited!! My neurosurgeon had informed me during my initial evaluation in 1982 that he knew there was "something there"
that was causing my pain but until he knew exactly what that "something" was, he was not going to operate.
I continued to work in agonizing pain. For years I went home after work and went straight from the front door to the
bathtub where I could soak my sore and stiff back in the hottest water possible. Standing and walking became an exercise
in strength and will!! The only medications I was allowed in the way of any kind of muscle relaxer or pain medicine
was Soma, a mild muscle relaxer which really was not all that effective, but did act as a mild anti-anxiety agent overall
and in that context, did relieve some of the muscle spasms I was constantly suffering from in addition to the pain.
Occasionally, if my pain became very "severe", but only on very few occasions, was I allowed any kind of a pain medication.
Tylenol #3, a very mild prescription analgesic, was the only pain medication I took and as I stated above, only on very
few occasions during any given year. I was miserable and in excruciating pain 24 hours a day, seven days a week.
I became angry that pain had now begun to define everything about my life; it was taking over my life. My
only saving grace in all of this remained my career. I loved what I was doing, and my job gave me a chance to try
and put "pain" on the back burner for at least eight hours a day, Monday thru Friday. In 1986, Hopkins became
one of the first hospitals in the area to acquire a new 3-Dimensional imaging scanner. This scanner now enabled physicians
to view a patient's xray in an entirely new way from the previous flat image. By the use of a computer
and the new scanner, physicians could now view parts of the anatomy in a more detailed fashion, were actually able to "move"
the image around as if the patient were moving around, and the new images made it possible to explore further into the body
to make a more accurate diagnosis possible. When I had a 3-D CT Scan of my spine, my neurosurgeon finally
had the picture he had been waiting for and I had been waiting for all of those years. He found that I was suffering
from "spinal stenosis", a serious condition that can leave you paralyzed if they do not perform an operation called
a "foraminotomy" to open up the spinal column to make room for the nerves crowding the spinal cord. We
scheduled this operation a full nine months in advance, although I was in incredible pain all of the time, because the association
where I worked had an Annual Meeting coming up that June in Monterey, California, as well as a Trade Show in Louisville just
one month later and I was responsible for putting together the convention in its entirety and part of the Trade Show and I
knew the CEO depended on me to do this. I went to work everyday, in pain, as I looked forward to this operation
coming up that September where I thought I would say goodbye to chronic pain forever!! I finally had this operation
in September, 1987 and I was pain-free for the next three years. In 1990, my leg pain started up, and once
again I found myself on the medical merry-go-round every chronic pain patient knows and does NOT love! In July,
1993, diagnosed once again with stenosis at another level of my spine, I went back to the operating table for operation #4.
It was around this time that my neurosurgeon referred me to a pain specialist -- also on the staff of Hopkins at that time.
I was not even aware there was such a "specialty" as Pain Medicine, but for the very first time since my ordeal began in 1979,
this pain specialist was able to bring my pain under control. This does not mean by any means that my pain was cured because
it was not. I still have pain -- every day -- but this pain specialist was able, at least,
to make my life more comfortable!!! It is my hope that every chronic pain patient is as fortunate as I am when it comes to
medical care and the caliber of physicians I have had access to. This pain specialist truly cares about each and every chronic
pain patient -- not only for pain caused by spinal defects or abnormalities but also pain caused by migraines, reflex sympathetic
dystrophy -- pain for ANY reason!! After being out of work for seven months to recover from the
July, 1993 surgery I went back to work in January 1994 only to receive the awful news from the hospital a month later
that the surgery had not worked, and the fusion had failed. Not only this, but I would need still another operation!!
(I believe it failed this time because another orthopaedic surgeon "missed" the fact that in addition to the spinal stenosis,
I also had a fractured facet bone and the bone had split in two with half of it sitting on a nerve root. My neurosurgeon
had sent me about two months prior to this 1993 surgery to an orthopaedic surgeon to be evaluated to see if it was felt that
a fusion should also be part of this procedure. This orthopaedic surgeon informed my neurosurgeon that a fusion should
not be part of the procedure and the overall surgery was planned with this in mind. However, as soon as my neurosurgeon
opened me up on the table, he saw half of the broken facet bone sitting right there in front of him ON the nerve root!
A fusion was performed by the neurosurgeon and I remember him walking into my hospital room early on a Saturday morning, my
first post-op morning, and waking me to apologize for not catching my broken facet bone sooner.) Not only had this
operation failed (meaning the fusion, once again, had not taken or healed into a solid stabilizing mass), but I
would need still another surgery. This next surgery would be more complicated and lengthy in that "stabilization" would
be needed. "Stabilization" becomes part of a spine surgery when it is found that the only way to stabilize a certain
portion of the spine is to implant metal rods and pedicle screws along with performing the usual fusion procedure, or taking
bone grafts from one or both hip bones. This additional step of implanting a metal rod is necessary to insure
the success of a followup procedure and one that is done when previous attempts at fusion have failed and the spine has
suffered from damage. It is a much more lengthier procedure and one that comes with a great deal of risk, not to mention
requires an extremely long postoperative recuperation period. It was at this point in between operation #4 (July, 1993)
and what I knew would have to yet again be another surgery requiring a very long postop period, that I was forced to
face the very painful fact that I was no longer able to work fulltime and the decision was made to give up my working life!!
On March 24, 1994, I returned to the operating
room for operation #5, this time for over nine and a half hours to implant two rods to stabilize the area that had been operated
on in July of 1993. The surgeons succeeded in getting a rod implanted on my left side, but the right side was
too damaged and they were not successful in getting an identical rod implanted on that side. I was given a diagnosis
of "failed back syndrome". Failed back syndrome, quoting Dr. Fishman in The War on Pain, "is not a single disease
but a collection of conditions that emerge after any number of surgeries or other treatments. The sensations that crop up
after surgery include diffuse dull and achy pain, pain that radiates into the hips, buttocks, and thighs, or sharp stabs of
pain in the back and legs. It may result from scarring on the nerves and so be categorized as a radiculopathy, meaning that
it radiates from an overactive nerve root. The surgery may have cut tissue that became damaged and caused neuropathic pain.
The failed back pain may come from a joint that's become irritated and inflamed because the surgery altered the person's posture,
gait, and way of moving. Another possibility is that the surgery has disrupted the usual way muscles are positioned or function
and has triggered muscle spasms or myofascial pain. A host of things can go wrong with back surgery, either because of the
surgery or from the healing that follows, such as from the scar tissue that always forms. Any surgery is going to change the
back's configuration, which always raises the possibility of new developments. That is why no surgeon can ever give an ironclad
guarantee of long-term success. Medicine's recent understanding that spinal disks and structural weaknesses probably have
less to do with some low back pain than previously thought has significantly changed the way doctors view back pain and back
surgery. This is one of the lessons of failed back syndrome and another compelling reason for approaching back pain first
by looking to treatments that change the way you use your back rather than changing the back itself." I hated to go out on
disability, I really did, because I realized it was sounding the "death-knell" on every dream I had ever wanted for myself
and my success!!
Being in constant pain does NOT mean
that a person has to stop "living" and trying to make the most of each and every day!! I will never forget the opportunities
I had during this time period of both working fulltime and being on disability and which I took full advantage of. Two separate
opportunities occurred during each of the above time periods in my life (working and not working). I was invited to two
Super Bowls. Super Bowl XVIII in Tampa, Florida and Super Bowl XXXI in New Orleans, Louisiana. My now ex-husband, my
ex-father-in-law and myself saw our team, the Washington Redskins, lose in Tampa to the Los Angeles Raiders in January, 1984.
We flew to Florida on a special shuttle flight set up for fans, saw the game and headed back to Washington at 12:30 monday
morning. We landed back in Washington and I was able to get all of one hour's sleep before rising at 5:00 AM to begin my third
week on the job as a meeting planner for a trade association in Washington, D.C. I came back from Florida about $1,000.00
poorer than when I had left ($500.00 of this being the game ticket I had to buy for myself), along with possessing a
bad facial sunburn!!! In 1997, myself and a friend of mine saw Brett Favre and the Green Bay Packers win in New Orleans at
the Louisiana Superdome at Super Bowl XXXI!!! (this occurred after my "retirement" had begun) and no, I didn't have to pay
for my game ticket myself. I remained in constant pain during these years but as the years went on, what began to happen
was that I was able in my mind anyway to place the pain itself on a "back burner". I knew the pain was there, it was
uncomfortable, aching, severe at times when I was engaged in activities such as sporting events but I was still determined
to somehow remain as active as possible. Most of what I talk about dealing with putting pain on the back burner, even
though remaining in pain, occurred while I was still working fulltime and before I was referred to the pain specialist.
After seeing this pain specialist, my pain became much more manageable in my everyday life and improved the overall quality
of my life. I am very glad that I was able to travel during my working life and be around people during this time
because what happened after I went out on disability was that, except for very limited circumstances of getting
out of my house, traveling to another Super Bowl after I went on disability, and occasionally traveling to South Carolina
to see my Mom and her family after they had moved in 1994 to the beach, my routine became, for the most part, housebound.
This is when a chronic pain patient finds that a lot of the emotional feelings he/she is carrying around begin to surface
more and more. After going out on disability, I experienced more feelings of loss of self-esteem, depression, isolation,
general loneliness, not to mention a change in lifestyle due to a drastic reduction in monetary abilities (I was broke
most of the time and remain so to this day!).
In April, 1997, I had a spinal cord stimulator
implanted and while it did not relieve my back pain, I was satisfied with it's success in relieving at least my leg
pain. The stimulator is meant to "override" a pain sensation. I remember thinking this surgery would be fairly
uncomplicated and painless but I was surprised in that it was quite painful and I did require assistance in getting around,
both in the hospital and at home, for a few weeks. The satisfaction with the surgery and the stimulator was short-lived in
that a fall three months later not only fractured my L1 vertabrae but stopped the stimulator from working the way it had been.
This is when the osteoporosis reared itself in an ugly manner because in one fall that did not last but a couple of seconds
at the most, I had fractured my spine, my right eye socket and my right facial cheekbone. (in 1996, I had fractured my left
wrist, requiring surgery to repair) This fracture of my vertabrae could not have come at a worst time in that sadly, my Mother
was dying of lung cancer and had only six more weeks to live. My orthopaedic surgeon had wanted me to go on complete bed rest
after the fracture, but I told him absolutely not, since my Mother needed me and also because she was two states away -- about
an 8 hours drive. I forged on as well as possible trying to recuperate from this fracture, with a back brace.
My Mother died on September 23, 1997. For quite a while I did not even think about my back and grieved my loss.
Increasing pain, though, led me back to the orthopaedic surgeon. After undergoing diagnostic 3D CT Scans, a myelogram
and a very painful facet block, it was decided that I needed another major reconstructive spine procedure
to correct the damage from the fracture. On October 26, 1998, one year and a month after my Mother's death,
I underwent operation #7 to reconstruct the T12 and L1 vertabraes, this time using bone taken from the T10 rib -- involving
open-chest surgery, the complete removal of the rib, and a trip to the intensive care unit!
What had started out so many years before as one little
herniated disc had turned into having every one of my lumbar vertabrae operated on for one reason or another, a fractured
facet bone and fractured vertabrae. What has been just as difficult to face through all of this, though, are the emotional
issues that we began to discuss earlier in this section. Anyone experiencing chronic pain is very familiar
with these issues, unfortunately. The emotional components include isolation, depression, loss of self-esteem,
difficulties with sleep and anger. In my case, the isolation started, of course, when I was forced to give up my working
life. Most of my friendships have come from meeting someone at work, so when I gave up going into the office everyday,
eventually, I lost contact with most, though not all, thank god, of the people I knew. These people had become a second
"family" to me. I was no longer having coffee every morning with them, or exchanging gifts every Birthday or Christmas.
I no longer had the challenges and responsibilities -- whether it was meeting that 2:00 PM deadline for a report due, or planning
the Annual Conference in one of many beautiful spots in the United States that our conference was usually held in. I
was very fortunate in that my job at that time gave me the opportunity to visit so many beautiful places and stay at fabulous
5-STAR resorts, such as Monterey, California's "The Hyatt Regency Monterey" -- a 4-STAR resort actually; Durango, Colorado's
"Tamarron Resort"; Palm Beach, Florida's "The Breaker's Hotel"; Napa Valley, California's "The Silverado Country Club and
Resort"; New Orleans, Louisiana's "The Fairmont Hotel"; Asheville, North Carolina's "The Grove Park Inn"; Colorado Springs,
Colorado's "The Broadmoor", and "The Williamsburg Inn" in Williamsburg, Virginia, etc. I am fortunate in that I have
some very special memories from that time when I was meeting planning. Hot air ballooning in Durango, Colorado; horseback
riding in the same place, as well as going up in an airplane glider in Napa Valley, California with an FAA-certified United
Airlines pilot; touring all of the wineries in Napa Valley -- these are all special memories that I have and I did all of
those while still in pain from my bad back!!! You might be asking yourself at this point --what in the world does hot air
ballooning and airplane gliding have to do with meeting planning? What happened was that myself and our Trade Show Director
would always fly out to the meeting site at least one day in advance of the CEO and others traveling to the meeting. In order
to relieve ourselves of pre-meeting "anxiety", we would always try and find something fun to do on our one "free" day before
the meetings began. Hence, the hot air ballooning or airplane gliding or whatever else we could do without the CEO finding
out and without killing ourselves (laughing!!) Usually, the more dangerous it was, the more we just had to do it!!! One of
the last memories I have of this time is when the chairman of the board of directors of the association where I worked, asked
all of the staff to stand up for a standing ovation in Napa Valley, California at the closing-night banquet and he called
out my name especially to thank me for the job I had done on the Annual Meeting that year!!! I was very proud of myself
for continuing to work in spite of the pain and because of the fact that I became known for excellent meeting and convention planning
and project implementation! When all of this came to a crashing halt in 1994, I felt like a complete failure (loss
of self esteem). I still struggle with this and the other feelings every chronic pain patient experiences, especially
after going out on disability. Even now when I have to go on an errand into the city I had worked in for
so many years, I look around at the people coming and going, getting on the subway or bus with their briefcases, tote bags
and umbrellas and the only thing I see is myself standing "outside" this invisible window looking IN!! I don't
think these people I am looking at from the "outside" have any idea how blessed their lives really are. I would expect
that most of them woke up that morning and said to themselves "not another day of this, I just can't take another day of this"!!
They dressed themselves and sleepily walked out of the door, not feeling blessed at all. How wrong they all are!!
It is still my goal to eventually beat all the odds and return to fulltime work, even though I know I will never be free
of this pain. I have vowed never to be one of those employees, if I should be fortunate enough to return to fulltime
work, that will gripe to themselves as they are getting ready to go to work each morning. I will be one of
those employees that will be forever grateful for the chance to step in the workforce again!!!
Sleep is a continuing problem for me -- in my case,
I believe sleep is something I rarely achieve because most of my days are spent like my nights. IF I happen, however,
to have a day where I am very active and do not end up turning into a couch potato, I WILL sleep very well that evening.
(such as if I should go out to my Brother's house to see my nephew and we are coming and going most of the day). When
I am spending my usual "quiet" time at home, I will: read a good book, use the computer, listen to music,
or watch something good on cable. I will take short naps during the day and evening hours. I DO occasionally
work on needlepoint projects but have to limit this activity because it is very hard on the back and hips, with
all of the sitting required to accomplish it.
I do spend as much time as possible on the weekends
at my Brother's house with my Brother, my Sister-in-Law and my Nephew or doing something with my Sister. As you can
tell from this, what happens with chronic pain is that if you are suffering from it your "world" becomes smaller and smaller.
I do think most, if not all, chronic pain patients would agree with me. You may have a job at the beginning, but unfortunately,
if you have had chronic pain for a while, chances are you are no longer working. I had a marriage at the beginning of
all of this and with just a few quick turns of the head five years later, I didn't have a marriage anymore. If you are
unlucky enough, as is my case, to not have a strong support network setup, including a strong, financial backup,
you can expect that your finances will take a drastic turn for the worse. This is a look at chronic pain.
Chronic pain is NOT just the pain itself. It is EVERYTHING that surrounds that pain. The emotional and financial issues
are just as bad as the pain itself. The hope now with increased treatment for chronic pain is that these problems are
being recognized more and more by physicians -- not only physicians that have taken extra years of training to be
certified in pain management but physicians such as internists and general practitioners that in the years ahead, will see
only more and more victims of chronic pain.
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