vsteensma

When a femur breaks, the largest and strongest bone in the body it is traumatizing, but when one simply snaps as if it were a toothpick, that moment will haunt you for years to come. Recalling the excruciating, physical pain and the mental anguish is one thing, but flashbacks are quite another!

The year 2009 was a very traumatic one for me because I had not just one, but two femurs that snapped. The first was on March 21st and the second was July 5th.

At the time of my first fracture, when the orthopedic surgeon told me the cause of my fractures, I vowed I would spend the rest of my life if need be, warning others about the reason this happened. I hope this article will serve well in that cause.

When the first femur snapped, I thought I must have stepped in a hole, or done something to take me to the ground. However, I soon learned it was not my fault and it was not bad luck—it was bad medicine! The worst part? The cause was one of the several drugs* (see note below) that was prescribed to prevent—prevent—Osteoporosis! However, brittle, chalk-like bones were the result after taking Fosamax for a little less than nine years! And to think I was supposed to be on that drug for the rest of my life.

The following is my story.
Share it and remember it so that it doesn’t happen to you or someone you know!

The Beginning of a Very Long Journey

March 21, 2009—It was late afternoon and I was home alone. My husband was not due home from a business trip until the next evening. The day was unusually warm and sunny with spring flowers popping through the warmed earth, but the nighttime temperatures were going to dip back to winter-time temps in the 20s. I had been walking in the tree-lined field next to our riverside property enjoying this spring-like reprieve, but when I turned to come back to the house, I felt as if I had been pushed off balance and just that quick I was on the ground, twisted and laying on my left side. I heard my right leg snap, it sounded as if a tree branch had broken. It snapped before I hit the ground. That sound of the breaking bone is one I will never forget.

After the initial shock, I knew I had to get back in the open so I would be visible before nightfall, which was fast approaching. I scooted on my left side pulling at the grass and stubbles of last year’s growth, and anything that I could hold onto that would give me leverage to move forward. I began screaming for help and waving a small tree limb I picked up along my “crawl path.” I hoped someone might see a stick waving, even if they could not see a person lying in a field. After what felt like a long time, though I have no idea how long that really was, an “angel” heard my cries from far across the river. He called a neighbor and together 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 lump on my leg), he immediately called 911, while the other man assured me that help was on the way. The adrenaline that had been surging through my body and kept me in survival mode when I felt little pain, was now subsiding. The intense pain that hit, along with horrific muscles spasms initiated by the broken bone, took over my body with a vengeance. All I could do was scream, hoping I would simply pass out. I didn’t.

The sheriff deputy arrived before the EMS and together the three men kept talking to me, which did keep me lucid and calm. After the medical team arrived and was able to stabilize my leg, I was transported to the local hospital. The x-ray showed that I had a completed atypical, subtrochanteric fracture of the right femur. Also, an x-ray of my other leg revealed a pre-existing stress fracture in the same exact location. I cannot describe the intensity of the pain that came in waves. It was obvious that the pain was not subsiding with the initial dose of pain medication, so the ER doctor administered several more doses of intravenous pain medication and muscle relaxers. Once I had another dose of IV medication that was supposed to really dull the pain (but did not completely) they splinted the leg and I was transported by helicopter to a larger city hospital where an orthopedic team was waiting for me. My husband had been notified and was on his way to the hospital, as were our three sons.

The flight was quick; however, even with the large amount of drugs administered, I was still fully alert and very much in pain. My husband and sons arrived at the hospital shortly after I did. After the orthopedic surgeon reviewed the x-rays and ER report, he told us my fracture was a “Fosamax Fracture,” and that I should stop the drug immediately. If I wasn’t in shock at that time, I was certainly shocked to hear those words.

He said he had seen a few cases and the fractures are identical. He also told us the other femur needed to be rodded to prevent another complete fracture like this one. I was unable to make any decisions, as this doctor ordered more medication that thankfully, was finally making me drowsy. My husband told the doctor we would schedule the surgery as soon as possible since he couldn’t imagine how I would be able to heal properly if both legs were incapacitated by rodding both at the same time.

In view of the fact that a number of hours had passed since the fracture occurred and I was very weak, the doctor decided to stabilize the leg immediately to control the constant spasms rather than proceed with rodding the femur. He did a procedure called Skeletal Traction. I was taken into surgery where he inserted a pin horizontally through the bottom of the femur at the knee. This stayed in place until the following day when I had the surgery to repair the fracture by inserting a titanium, intramedullary rod (“nail”) the full length of the femur. The rod (nail) was held in place by a top and bottom screw. The swelling was so extensive, I weighed 10 pounds more the next day!

After three days in the hospital, I was released to a rehab center for 2 1/2 weeks of intensive physical therapy and then I had more outpatient therapy for another six weeks, at which time I graduated from a walker to a cane. We had scheduled the prophylactic rodding of my left femur for the next month (early June) to give my right leg more time to heal.

One week after my therapy ended from the fracture, I was in our garage when I lost my balance stepping over a hose and to prevent a fall that might injure either leg, I turned quickly to grab the door and felt a “pop” in my back. A few days later when the pain would not subside, my doctor ordered an MRI that revealed that “pop” was a fracture at lumbar disk level one. I had to postpone rodding my other femur while this new fracture healed. We now planned on mid-July.

However, that is not the end of my story ….

July 5, 2009—I had been out of the back brace for two days and had gone to town to pick up a few things at the grocery store. When I returned, as I came in our back door, I once again heard that terrifying, “snap!” My left femur broke in the exact spot as my right, sending me to the floor with the pain that I hoped I would never experience again. This time my husband was home so I had immediate help. The same treatment protocol was followed, except this time I needed two pints of blood due to internal bleeding at the fracture site.

My story continues with more fractures over the next seven years, and suffice it to say complications and non-healing are big issues that I hope this article will help others avoid.

15 Months Later
October 2010—I needed surgery to re-rod the left femur that had not healed beyond the first three months stage after the initial fracture. Non-healing (non-union) is very common for those of us in this situation. Two more incisions and scars to add to my collection.

7 Months Later
May 2011—I received the good news that my left femur had healed! Twenty-two months (22!) after the initial fracture! There is still daily pain in both legs as more stress fractures and microfractures occurred with each passing year, but there is nothing more to do since the femurs are already rodded. I have constant Bursitis in the areas of the Trochanteric bursa (hip) due to the top screws rubbing against the bursa.

However, thrilled as I was with my doctor's news, he said he needed to x-ray my right foot to find the cause of the pain and swelling that had begun three weeks prior for no apparent reason. He diagnosed a fracture of the fifth metatarsal, at the proximal end, which is in the mid-section of the foot near the outer arch. At this point, I had been off the drug for more than two years!

14 Months Later
July 2012—My doctor declared my fracture was healed! Fourteen months—nowhere near what is considered a normal healing time.

August 2014—Spontaneous fracture of the fourth metatarsal—middle of the foot. Back into the Aircast boot.

November 2014—As much as we don’t like to think, “one thing leads to another,” it just might. Wearing the Aircast boot created stress on the opposite side of the body and due to the extended need to wear it, that amount of stress was too much. On November 1, both Menisci (Medial and Lateral) in the left knee tore. I had the surgical trim and repair surgery performed on November 10. Though this is a quick fix and short healing time for others, it took more than two months for the swelling and pain to subside. The nerve damage, however, has proven to be permanent.

March 2015—While still healing from the previous fracture, and of course, still wearing the Aircast boot, the third metatarsal fractured spontaneously—the middle of the foot.

December 2015—Still waiting for the other fractures to heal. While simply standing at my kitchen counter preparing our family’s Christmas dinner, the second metatarsal fractured in two places. I now had four fractures next to each other across the center of my foot.

February 2016—I used a bone growth stimulator for five months to absolutely no avail, and I needed to do something else, especially given that new fractures occurred spontaneously while I was using it! After almost seven years of broken bones—and after being off the drug that caused all these fractures—I began the daily injections of Forteo, a drug allowed for a maximum use of two years in a lifetime.

July 2016—All bones are completely healed and I stopped the Forteo injections one month after the wonderful news from my orthopedic doctor. I will save the remaining dosages of Forteo in case I need it again to heal a broken bone.

Since my fractures began, I have daily pain and was diagnosed with trauma-induced Fibromyalgia and of course, there are other issues that hit us all at this point in life. I highly recommend physical therapy to anyone and not just for those in this situation. After the fractures, I "waddled" like a drunk duck, but thanks to leg strengthening exercises I learned and do on a daily basis, my stride is fairly normal again. Neuropathy in both legs and feet is a result of the surgeries and I do the best I can with that. I will not take any "new" drugs and always do my research with the generic forms I do take for other issues. However, I will not let these events define me. I am more than they are. My life is different, there is a different "normal" for me. I wish I could do things as others in my age group do, but wishing can waste a lot of time. I switched from being active to doing what I can and photography became an enjoyable hobby.

I take a calcium citrate time-released tablet (Citrical), Vitamin D3, an additional 2,000 IU, 500 IU Magnesium, and an additional 100mcg of Vitamin K2 to help with the absorption of the calcium. The more you can get of these elements in your diet the better. Do not exceed 1200 IU of calcium per day, our bodies cannot absorb it and it will be flushed out through our kidneys creating the perfect environment for kidney stones. Confer with your doctor before adding anything to your daily regimen, and ask if there is a certain time of day that is best for you if you are taking other necessary prescribed drugs.

Why did this happen and how you can prevent it from happening to you?

At the age of 50 I had my first DEXA (bone density scan) with a result of a T score of –1.0. That number meant I had very mild bone loss The DEXA compares your bone mass, not quality, to the bones of a 30-year-old woman. I have to say, nothing on my body looked or felt like it did when I was 30, so why would this be unusual? Bottom line—it’s not. This new condition—not a disease in any form—was given a scary name, “Osteopenia.” To simplify this new definition, Osteopenia is to aging bones, what gray hair is to the scalp! Having gray hair does not mean you are going to go bald, and aging bones do not always lead to Osteoporosis!

Osteopenia was “created” during a medical conference when a line was drawn on a blackboard. That line, that number, became the divide between what your doctor would diagnose your DEXA reading to be; either Osteopenia (as I said, NOT a disease) or Osteoporosis. My doctor at that time was emphatic when he said, “You have Osteopenia and in order to prevent a horrible future of broken bones and the inability to have a good quality of life, you need to begin taking Fosamax now and continue taking it for the rest of your life so you can have those healthy bones and enjoy those grandkids!” The mention of not being able to play with my grandkids was enough to make me run to the drugstore to fill the prescription!

Fosamax was the first of that class of drugs to hit the market to treat Osteoporosis with many more to follow with varying dosages and the ways they are administered. They promised it would save our bones. I took an oral weekly dose of 70mg and within nine years, my life was changed forever. I could not play with the grandkids that came later like I did with my first ones. And I had to retire early from a job I loved.

I had no family history of Osteoporosis and probably would never have gotten to that point, but drug companies push the doctors to prescribe their wonder drug, and repeating the horrors the drug companies proclaimed would result, the doctors “scared” their patients into taking it as a preventive drug. This was a fallacy and knowledgeable doctors no longer prescribe (or certainly should not) these drugs as a preventive measure for Osteoporosis.

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 in 2009.

http://www.npr.org/2009/12/21/121609815/how-a-bone-disease-grew-to-fit-the-prescription

The big pharmaceutical companies tell the doctors these fractures are just “rare” side effects and so many victims are often told their fractures are "very rare." We know differently and we also did not choose to be collateral damage! Dr. Jennifer P. Schneider, a now retired, pain management specialist and a fractured femur victim herself, founded an online support group for those who have suffered these femur fractures. When I talked with her about just how “rare” these broken bones were—a term we grow weary of hearing—she said,

“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 Bisphosphonate 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 the number of recognized cases is also an underestimate!”

Those who have experienced one or more of these femur fractures are now different humans; we no longer have bones of quality. We require knowledgeable treatment and deserve nothing less! Not all doctors want to acknowledge the extreme dangers of these drugs, let alone acknowledge a different approach on how to treat such a patient appropriately—and prescribing more of the same drug is not the answer! Many victims have died on the operating table while rodding the broken femur that should never have happened. Sadly, that number is hidden in statistics of “aged patients,” whose injuries were also given the wrong medical diagnosis code as that of a broken hip when they arrived at the ER.

Anyone who is or has taken any of the listed drugs and is experiencing a nagging thigh, leg or hip pain, could already have a stress fracture and should get an MRI or nuclear bone scan as soon as possible. Yesterday would not be soon enough!

The nuclear bone scan 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 bone that could literally snap at any time. Forty percent (40%) of those who have already experienced one femur fracture did have positive bone scans (nuclear 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 femur. Do not wait, you could end up with a complete fracture as I did!

I would like to write an ending to this story instead of “Updates,” but only time will tell. Again, I want to say, these drugs are NOT a preventive, and should not be taken for longer than three (3) years, though in 2010, after Dr. Schneider and a few of her support group's members presented evidence to the FDA, who then authorized a sub-committee to research the claims, the FDA realigned their stance and stated five (5) years should be the maximum and that it should not be used as a preventive drug. Though many doctors use that number for prescribing, there have been no efficacy proven beyond the three-year mark and there are cases where a patient has experienced these fractures at the four-year mark. Long-term use is not the answer. Some doctors tell their patients they need to take a "drug holiday," meaning they are off the drug for a year or so. However, there is no proof that this "holiday" helps because the drugs have a long half-life, which means the drug stays in the bones for many years. With Fosamax, it is more than a decade with the drug still leeching out even after 23 years!

The best advocate for the patient is the patient!

Help educate your doctors. Never hesitate to “help” your doctor learn about this or any other topic so that he or she can take better care of YOU! Never hesitate to ask questions and always be sure to read the patient insert that comes with any of your prescription drugs.

If you are a relative or close friend of someone who takes any of these drugs, check with them to be sure they have not been on them for an extended period and to be certain they are not having symptoms of new pain that could be caused by drug-related stress fractures. You could be saving their life.

*Please make note of these Bisphosphonate drugs that cause femur fractures and other serious side effects:
• Fosamax
• Fosamax D
• Actonel (all versions)
• Atelvia
• Aclasta
• Aredia
• Binosto
• Boniva
• Didronel
• Reclast
• Skelid
• Zometa
• And all generic forms
• Prolia—This is a drug of different composition, but prescribed like the others and has the same side effects. The maker, Amgen, lists “Jaw Necrosis and Fractured Femurs” as side effects caused by the drug—a big step for any pharmaceutical company to state the drug as causation! These drugs also have other side effects that can make a person feel ill such as but not limited to muscle and joint pain, flu-like symptoms and stomach, and indigestion issues that can lead to esophageal cancer.
•
Did you, or someone you know have a fracture and have been treated with any of the Bisphosphonate drugs?

It is very important to report each fracture (regardless of bone location) to the FDA. Please do so at your earliest convenience. You can do this online at:
https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home

The victims of these fractures will continue to be considered rare if this report is not made for EACH fracture—stress or completed—or for any other side effect you experienced with any of drugs.