How can anyone describe the pain associated with a fractured (snapped in two!) femur? Each individual is different to be sure, but with every description I have read or heard about, the person has stated it is “the worst pain” they have ever experienced—and for women that includes labor and delivery!
Breaking a femur, the largest and strongest bone in the body, is traumatizing, but when one simply snaps as if it were a piece of chalk, that moment can haunt you for years to come. The year 2009 was a very traumatic year for me. The physical pain is one thing, the mental pain and flashbacks are quite another! At first, I took the blame for breaking the first femur, (i.e. I must have been clumsy, not watching where I was walking, etc. …) but I soon learned it was not my fault and it was not bad luck—it was bad medicine!
The worst part? It was a drug that had been prescribed for me to prevent my bones from becoming osteoporotic and brittle! The results from taking Fosamax (and Alendronate, the generic form**) for 10 years, are bones so brittle anything could “snap” at any moment for absolutely no reason! Osteopenia—not a condition or disease at all—should never be treated with drugs! Osteopenia is to aging bones, what gray hair is to the scalp! It does not mean you are going to go bald and thinning bones does not always lead to Osteoporosis! The term Osteopenia was “created” at a meeting where a line was drawn on a blackboard that gave a cut off where Osteoporosis began and then they gave that line a name.
The following link is to an article that is a “must read” for all of us with the “non-disease,” Osteopenia. The report was first aired on National Public Radio.
http://www.npr.org/2009/12/21/121609815/how-a-bone-disease-grew-to-fit-the-prescription
**Please note the drugs included are: Fosamax, Boniva, Actonel, Atelvia, Reclast, Zometa and generic forms, plus Prolia.
THE BEGINNING:
I fell March 21, 2009 in the field next to our property. I was home alone; my husband was not due home from a business trip until the next evening. After my short Springtime walk, I turned to come back to the house and as I did, I felt suddenly off balance and though there was nothing I could have tripped over I fell to the ground, (in what I recall as slow-motion) landing on my left side. Oddly, I heard my RIGHT leg “snap and crack” before I hit the ground!! (A sound none of us will ever forget.) After the initial shock, I knew I had to get back in the open so I could be visible before nightfall, which was fast approaching—and the temperature was dropping quickly.
I crawled (rather, scooted on my left arm and side) as far as I could, grabbing at twigs and tall grass, or anything I could grasp, while screaming for help and waving a small tree limb I picked up along my “crawl path.” Finally, (and I really have no idea how long I had been crawling and screaming) an “angel” heard my cries from far across the river that borders our property. He called a neighbor and they came to help me, when they saw the condition of my body with my leg going in two different directions (I was not able to see anything except the huge swollen side of my leg), he immediately called 911, assuring me help was on the way. The adrenaline that had been surging through me for my survival mode subsided and the pain and muscles spasms set in with a vengeance.
Once the EMTs were able to stabilize the leg, I was transported to the local hospital. The x-ray revealed I had a completed atypical, subtrochanteric fracture of the right femur. Another x-ray revealed a pre-existing stress fracture on the left leg in the exact position. I was given several doses of intravenous pain medication and muscle relaxers, then transported by helicopter to a larger city where an orthopedic team was waiting for me. Once admitted, I was taken into surgery where the lead orthopedic surgeon inserted a rod horizontally through my knee, then hung weights from the protruding ends of the rod on each side of my leg for traction to stabilize the muscles that were spasming and to re-align the femur. The next day, I had surgery to repair the fracture by inserting a titanium, intramedullary rod (nail), held by a top and bottom screw. After three days in the hospital, I was released to a rehab center for 2 1/2 weeks of intensive physical therapy, then had outpatient therapy for another six weeks, at which time I graduated from a walker to a cane. We scheduled the prophylactic rodding surgery for later in July to give my right leg more time to heal. It was this orthopedic surgeon that told me my fracture was a “Fosamax Fracture.” He told me to stop the drug immediately.
One week after my therapy ended from the fracture, I was in our garage when lost my balance stepping over something and to prevent a fall that might injure either leg, I turn around quickly to grab the door and heard a small “pop” in my back. I didn’t think much about it at the time, however, after a few days passed, the pain in my lower back up to my ribs would not let up! After seeing two doctors and having regular x-rays (which did not show any injury) over a three-week period, one doctor finally ordered an MRI. The result of that “pop” was a fracture at lumbar disk level one. I had to wear a turtle-shell-style back brace and suffered a few more weeks of severe pain.
However, that is not the end of my story …
On Sunday, July 5th, 2009 (I had just been “released” from wearing the back brace) I was walking in my backdoor, when my left leg involuntarily “buckled.” Once again, I heard that terrifying, “snap!” My left femur broke in the exact spot as my right leg, sending me screaming to the floor with the pain that I had hoped I would never experience again. This time my husband was home so I had immediate help. The same treatment protocol was followed but obviously, I did not make it to my prophylactic rodding date and how I wish I would have had it done ASAP once I learned of it! A rodding surgery, even being a major surgery, would have been so much easier to endure.
In reflection, my doctors believe with the timing of my lumbar fusion (six weeks prior to the first fracture) the operation was not necessary. It was most likely the two stress fractures were the source of my pain in the thighs and groin area over the prior six months. This type of thigh and groin pain was—and still to some doctors—is still new territory. They do not think to check the femur area for concerns. In the earlier years—and sadly perhaps even now, there were no x-rays taken of the thigh area because the usual protocol for leg pain is that it is most often caused by spinal problems. Since an MRI did not reveal any injury or degeneration to my hip/pelvic area, a small bulging disk considered the source of pain and the fusion surgery was performed. I was told my lumbar fracture was a direct result of having had the fusion.
Also, one of the fallacies of the bone density scans (DEXA Scans) is that they show if there is an increase (or decrease) in bone mass, but it does not show the quality of the bone. My bone density tests showed that I had an increase in bone mass, so as far as my doctor was concerned staying on Fosamax, or it’s generic form Alendronate, was what I should do—for life!
Does this mean you should still get your bone density test? “Yes,” says Dr. Jennifer Schneider (also a victim of a Fosamax femur fracture). “I do believe they are valuable. They are useful especially as a screening test. If nothing else, a low T score will mobilize its owner to take some action. This would certainly include taking calcium and vitamin D3 and doing weight-bearing exercise (e.g. walking), and if the T score shows osteoporosis (i.e. -2.5 or worse), then I think taking a medication—shorter term—is a good idea.”
Dr. Schneider formed the support group that I participate in and can be contacted at: http://www.jenniferschneider.com
MailTo: [email protected]
Anyone who is experiencing a nagging thigh, leg or hip pain, could already have a stress fracture and should get an MRI or nuclear bone scan if at all possible. This is not a bone density test; for this test you are injected with radioactive isotopes, which will “light up” any stress fractures lurking in the dark that could literally snap at any time. Forty percent (40%) of the members in our support group who had already experienced one femur fracture, did have positive bone scans showing a stress fracture in the other femur! The most effective way to prevent another complete fracture if you have a stress fracture, is to have preventive rodding in that leg. Waiting to do it is not a good thing!
UPDATE OCTOBER 2010
On October 12, 2010, I had surgery to re-rod the left femur that had not healed beyond the first three months after the initial fracture. The fracture site remained two pieces except for some slight callusing on one side. This is all too common for those of us in this situation. The bisphosphonates are still active in the bones and prevent healing. This surgery removed the older titanium rod and screws. The femur was reamed and a larger rod (in diameter) with two new screws was implanted again. I had 30 staples holding the three incisions closed. This surgery, though a major surgery, still was not as bad as the initial fractures.
UPDATES: MAY 2011–FEBRUARY 2015
MAY 2011—I finally received the good news that my left femur has mended! My doctor and I hugged at his announcement of what we had been hoping for, for so long! However, on the same day my doctor said he needed to x-ray my right foot to find the cause of pain and swelling that had begun three weeks prior. I think I knew what it was, but denial was my refuge. He discovered a fracture of the 5th metatarsal (proximal end, which is in the mid-portion of the foot near the outer arch). For this discovery, there were no hugs … I had been off the bisphosphonate drug for over two years when my foot broke!
JULY 2012—My Ortho surgeon declared the foot is 100-percent healed! No surgery required! It took 14 months—no where near what is considered a normal healing time.
SEPTEMBER 2014—Another Fractured Tale:
I began having pain in my right foot in February after a fall on cement. My right foot caught on an elevated section of the walkway at our local hospital. Of course I was x-rayed head to toe, but in all actuality regular x-rays miss more stress fractures than they catch. However, I gave my body ‘healing time’ and did not see my orthopedic doctor until April. He ordered an MRI of the right shoulder which also had continuing pain and the right foot. He noted the right rotator cuff sustained a one-and-a-half inch tear (sometime that will need repaired) and there was “fluid in the foot” and thought it was a sprain that was in the healing process. I knew it was bone pain. I knew this was not the end of the pain.
I saw him again in June at which time he ordered a nuclear bone scan due to the continuing and now increasing pain in the foot. The foot "lit up" in the previous 5th metatarsal fracture site and on the 4th as well, but he diagnosed it as “arthritis” in the area. I left feeling very frustrated. I knew it was more than that. It was bone pain and with many days where I was near tears due to the pain and limping, I went to see my family doctor after another month had passed. She was very concerned and ordered another MRI. The next day her nurse called and told me the 4th metatarsal had a “well defined, proximal stress fracture with LOTS of inflammation (with surrounding marrow edema—(fluid).” My orthopedic doctor now knew his “arthritis” diagnosis may have applied to others, but not those of us with “phossy” bones!
NOVEMBER 2014:
As much as we don’t like to think that “one thing leads to another,” in our cases it might hold true. My left knee had had some twinges of pain, but nothing severe. After all, I do walk like a drunk duck in the 3D boot, which of course, creates stress on the opposite side of the body. In my case, it was one too many times and on November 1, both Menisci (Medial and Lateral) in the left knee tore. And it really did feel as if something tore right down the front of the shinbone. My Orthopedic doctor ordered an MRI and sure enough, meniscus tears. I had the surgical trim and repair surgery performed on November 10, outpatient, which for a younger, athletic person would have healed much sooner, but for me it took more than a month for the swelling and pain to subside.
FEBRUARY 2015:
After three months the knee is still tender and vulnerable, most likely due continuing to walk “unbalanced.” I have heel lifts in the opposite shoe, which does help, but I am constantly aware that the cartilage could tear again and that would not be a good thing, as there are only so many “trims and repairs” that can be done at this age. The metatarsal fracture is showing “some” signs of healing, but I do not plan to have surgery to pin it and my doctor agrees. So we wait.
My life used to be more active, as it should have been in these “early retirement years,” but over the six years since all this began things have changed more than I ever imagined. However, I will journey onward—and we must keep looking forward and not let these events define us. Validation for these kinds of injuries is important and for the thousands of fractured femurs, wrists, pelvic bones, shoulders and necrosis of the jaw victims, validation that the drugs took away the lives they used to lead is not coming any time soon.
Dr. Schneider commented recently, when I talked with her about just how “rare” these broken bones really were—a term we grow weary of, she responded;
“Most population studies grossly underestimate the incidence of Atypical Femur Fractures (AFFs) because they use the wrong denominator. What those misleading studies have done is compare the number of people with AFFs as a fraction of EVERYONE who was prescribed a bisphosphonate during some time period. The problem with that approach is that only a small fraction of people who’ve been diagnosed with an AFF continue beyond a short time, and the remaining people aren’t at a real risk of an AFF. The biggest study that was done correctly was a Canadian study that looked at the number of women with AFFs compared to the number who’d been on a Bisphosphonates for at least 5 years. They found that the incidence in that population is about 0.2%, or 1 in 500. Other drugs that have caused serious side effects in 1-in-500 patients who took it were TAKEN OFF THE MARKET. This is not a trivial percent!!! And, many people, and even many doctors, don’t differentiate between HIP fractures and AFFs, so that the number of recognized cases is also an underestimate!”
The important lesson for each of us is: if you have new pain—bone pain—aching pain, that you know is not caused by something else—do not give up on finding the REAL reason. Push your doctor(s) to help find the definite reason for that pain. We are now different humans; we no longer contain bones as they know them. We require knowledgeable treatment and deserve nothing less. We did not choose to be guinea pigs for the pharmaceutical companies that sold these drugs as the cure-all-end-all preventative treatment
I would like to write an ending to this story instead of “Updates,” but I also have made it part of my mission in life to continue to educate innocent, vulnerable men and women who have been prescribed these drugs and hope to save them from the pain and trauma of splintered bones. These drugs (**See above list please!) are NOT a preventive in any way and should never be taken for longer than 3 years regardless. Long term is never the answer.
The best advocate for the patient is the patient! Help educate your doctors, I have learned they do not always read their medical journals!