Comments

Hello all!

I wanted to check in because I'm reading a lot of these emails but have been too busy enjoying my revived freedom which is a direct result of my total ankle replacement to respond. I am currently 11 months post op. and am grateful for every day that I walk pain free on my new ankle. I thought I should tell my story from beginning to end, once and for all!

So get comfortable and make some coffee, this is my experience.

My name is Paul Bergerot. I am 52. I am, and have been been most of my adult life, a professional drummer. Although, as with any musician, to maintain a stable married life and to provide asteady income, my "day job", has been for many years, as a construction project manager, but I have continued playing drums because it is truly what I love to do.

On December 14th 2005, I fell off the second step (2 feet) of a ladder that had been set up in loose soil by a co-worker. It shifted as I leaned out to make a measurement, and my leg traveled straight down between the rungs of the ladder as it fell . I literally snapped off my right foot, breaking both my tibia and fibula and driving both bones through my sock into the dirt. As I laid on my back, on the ground, looking at the bottom of my tennis shoe facing up at me, I knew I had just experienced a life changing event. I had no idea what was coming, but I knew it was going to very different from what I was used to. So many thoughts went through my head. I had singlehandedly ruined Christmas, my wife, who is an ER nurse, was leaving the following day to attend her mothers funeral in Indianapolis, and now she had this to deal with this! Who would take care of my 11 year old son while I was in the hospital? Will I EVER play the drums again?

Funny how many things you think about when something bad like that happens.

I spent 4 days in the hospital and underwent 2 initial surgeries to repair my leg/ankle with plates and screws. I was ordered no weight for 3 months, at which point, my doctor removed some screws that were holding my ankle steady. I returned to work as a construction estimator, gradually increasing my activity to where I could return to the field as a supervisor, however never reaching a level where pain was not a big part of my life. Over the following 3 years, I regained most of my mobility, only to have it gradually diminish over the next 2, with increasing pain. During that time, I was given orthotics, several cortisone injections, pain medications, synvisc injections, and ultimately an arthroscopy June 18th 2009 that revealed end stage osteoarthritis. It was then that my primary orthopedist informed me that there was not much left he could do for me other than a fusion. He suggested I see Dr. Roger Mann of The Oakland Bone And Joint Clinic. Dr Mann was responsible for bringing the STAR ankle to the USA, performed the first six cases in Oakland, started the initial training program, and acted as the lead investigator for the FDA study.

Because my injury was an industrial accident, my medical care had to go through the state workers compensation insurance fund. My doctors initial referral to Dr. Mann was denied because he was not on their providers list. At that point I hired a workers compensation attorney to assist me with my case. It turned out that his son Jeffrey Mann WAS on their approved providers list and he had worked closely with his father on the FDA clinical trials for the STAR ankle.

Early in September of 09' I had to quit my job because I could no longer walk without a cane, nor could I play the drums any longer. Later that month I was permitted to see Dr. Jeffery Mann. He felt despite my "young" age, I was a good candidate for ankle replacement. I wanted nothing else in my life more than to get that new ankle!

It was then that my battle began with the insurance company. State Compensation Fund utilizes Anthem Blue cross medical guidelines for their authorizations, and Anthem considered ankle replacement "experimental, not medically necessary" I wrote letters to everybody in my state government, and I also wrote a letter to "The Blessed Ankles" support group. The next day, I received a very kind response from Gay Shook. Suddenly I no longer felt alone in my battle. There were others out there that totally understood what I was going through. And some that were able to share what I could look forward to if and when I did finally get my new ankle. My attorneys appealed 2 times, and both times I was denied.

On January 13th, 2010, Anthem Blue Cross of California reversed its policy on TAR's, and upon my third appeal I was approved for surgery. On March 10th 2010, I received my new ankle. Like many of the others here, I had a period where I became very apprehensive and frightened before the procedure. But in hindsight, it was really no big deal. Pain management was not a real issue. As with some others in this group, I received a block behind my knee and was sent home with a pain pump. (try getting through airport security with one of those strapped to your chest, that was probably the hardest part of the whole ordeal) I took vicodin for about 4 days and then Advil and Aleve were all I needed for pain. I followed the "toes above nose" advice I got from the blessed ankles and also found a knee walker on Craigslist. That thing was awesome!!! At 6 weeks I was partial weight bearing with crutches, and at 8 weeks I was allowed to bear full weight if I could tolerate it. At 3 months I went to Disney World for a week! I rented a scooter for 2 days, but chose to walk the remaining time there. I had a bit of swelling every day but I would ice it down , and the next day I was good to go again!

Since then, my ankle has gotten stronger. I play the drums for 2 churches and my classic rock band is out playing again. I haven't been able to find work yet because the construction industry in California has taken a big hit, but I'm confident it will happen. Nothing can compare to the suffering I once endured, or to the freedom I now have as a result to getting my ankle replacement.

Anyone who has been suffering from severe ankle arthritis and has been given the choice of fusion or ankle replacement by their doctor, keep in mind that both procedures come with risks. I can honestly say that I personally, would do it again in a heartbeat. I never realized how good life could be until I came out on the other side of this whole experience.

I hope someone who is in the midst of a similar situation finds this long winded story helpful.

Feel free to contact me if you need support or information about the STAR. (805) 455-5299

Good luck to all !!!

Warmly, Paul Bergerot

I am including a link to a list of doctors across the country that have used this prosthesis for you to review.

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I am writing not as a patient, but as a healthcare professional that shares your level of frustration and disappointment in the companies that are supposed to take care of people. I have been the orthopedic nurse for Dr. Greg Horton for almost 12 years and I have witnessed amazing stories. A person really can have their entire life changed by the service of one experienced surgeon, if given the chance. I have seen it happen.

I am not here to argue that an ankle replacement is the answer for all patients with debilitating ankle disease, but it SHOULD BE LEFT TO THE SURGEON to decide. As a nurse and patient advocate, it is so disheartening to witness a person go through the entire healthcare process, being built up with hope only to be let down in the end.

The lengthy ordeal of getting an insurance referral to a specialist, waiting sometimes 4-5 months for the appointment, which then takes several hours, discovering that a ankle replacement is the experts' recommendation and coordinating a surgery date to fit with work and family, only to learn ( sometimes just days before surgery) that it can not happen......ever! I do not pretend to know the suffering that the patients go through, but I can assure you that the surgeon and his staff are invested in that person and their final outcome.

The let-down is felt at this end as well. I can't think of anything more frustrating to my employer then knowing that he has the skills and the knowledge to help someone and then being told that he can't. Unfortunately, surgeons are at the same mercy of the insurance companies as the patients.

I want to thank Mr. Stallings (and all the other patients in the same situation) for your understanding and patience with the surgeon and staff that are fighting (usually unsuccessfully) on your behalf.

I think this website is a wonderful tool to support one another and perhaps the insurance companies will wake up and take care of people again!

Amy Goldman,
Orthopedic Nurse Coordinator
November, 2008

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"For several years I had severe arthritis in my right ankle. In the last two or three years it was becoming very painful to walk. I'm still not sure exactly what caused the arthritis in that ankle, but I had a terrible skiing accident when I was a teenager and shattered my left tibia. I may have also injured that right ankle at the time. I also became a runner in my twenties and ran for about 35 years - no marathons, just 3-5 miles daily and some "fun runs." I don't know if the skiing accident, the running, or both, caused the arthritis. Over the last two years, it became increasingly painful to walk, even with a Richie Brace and several injections. During the six months prior to the surgery, it got so bad that I knew I had to have something done. I was actually thinking about having a fusion. Until the summer of 2007, I didn't even know that ankle replacements were an option. I found out about them from my wife's foot and ankle surgeon who operated on her last May. After that, it was just a matter of getting all the information I could about replacements and deciding which doctor to have do it. I visited with three, all of whom recommended the replacement.

"After deciding which surgeon I wanted to do the replacement, I had it done in January 2008. Dr. Charles Cook in Dallas did the surgery. Everything about the surgery went just as Dr. Cook told me it would. The pain in the days following the surgery was minimal. I could not put weight on it for 6 weeks. The recovery went about as well as could be expected, but during the months following the surgery I continued to have some pain on the inside part of my ankle area. It continued for months and Dr. Cook determined it was a complication called "medial impingement." Essentially, this is a soft tissue and bone "pinching" problem that causes pain with each step. After about a year and a half, I decided to travel to Duke University Medical Center to have Dr. James K. DeOrio perform a relatively minor arthroscopic surgery to correct this problem. I chose Dr. DeOrio to do this revision surgery because of his vast experience and his particular knowledge of my complication. He did the surgery in October of 2009. The recuperation period was a couple of months, but full recovery was not achieved until about 7 months post surgery. I'm happy to say that I no longer have the pain.

"My ankle now feels great and I'm more active than I have been in years. My wife and I go biking regularly, I do yardwork, including mowing the grass, I do carpentry and painting work climbing ladders, and I regularly play golf about 3-4 time per week. I can't go on long walks or do any running such as playing tennis. But, my ankle is so close to feeling like a normal ankle that it surprises me. I do not walk with a limp of any sort and, unless I tell someone about the ankle, they never suspect any type of problem. I do have a little stiffness in the heel area, but this is not significant enough to even mention. In January 2011 it will be three years since my ankle replacement. I can't tell anyone enough how thankful I am to have found this solution for what I thought was an "unfixable" problem. It is truly a miracle!!!"

Jerry, Fairview, TX
September, 2010

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"As one of the subjects of a recent article in Orthopaedic Product News, I am also one who looks forward to an ankle replacement. I have visited with four orthopaedic surgeons in the past year and all of them feel that a replacement is the best solution to my ankle injury, a result of an auto accident in December 2006. The ankle was broken in three places and undiagnosed for seven weeks. By the time my local physician discovered it, too much time had passed for the breaks to heal. Now, I am also encumbered with injury-related arthritis.

"In spite of recommendations from four surgeons, my insurance company has refused to pay for the surgery, referring to it as 'experimental, investigational, and not medically necessary.' My orthopaedic surgeon, Dr. Greg Horton at KU Medical Center, was highly recommended by another surgeon as one who has great experience with replacements. Dr. Horton has said that I am an excellent candidate for ankle replacement because I still have some (painful) movement in the ankle. That appeal has had no impact on the independent position of the insurance company. Their grievance decision was reached by a small team of persons, which did not include an orthopaedic surgeon.

"I have appealed the decision to the Missouri Department of Insurance with no better result. The Department suggested that I provide them with peer studies. We have done that and are still awaiting any change in their position.

"Because of the success of others in our group, I believe that a total ankle replacement is the appropriate medical step in my case. However, I may have to wait until I reach age 65 and Medicare, which has approved ankle replacements in the past, takes over as my primary provider."

Tom, Branson, MO
September, 2008

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UPDATE to Tom's comment:

"My original story was of waiting for insurance company approval for an ankle replacement. I was turned down four times over a period of three years by BC/BS. The requests were made by three very competent ankle surgeons who all recommended the replacement over a fusion.

"Finally, in January, 2010, BC/BS had a change of heart regarding ankle replacements, moving them from their "experimental" and "not medically necessary" categories. As a result, I was approved for the replacement and that occurred on April 2, 2010."

"The replacement went very well, but I developed a complication that created an open wound about the size of a silver dollar which would not heal. Another trip to surgery to deep-clean the wound was also not successful, necessitating the wearing of a wound vacuum for seven weeks. That finally developed enough skin tissue to support a skin graft, which happened in July, 2010. Since that time, the healing has continued and, while I am not yet pain-free, I see hope for that soon. I walk almost normally, but not for great distance yet. It was only after the surgery that a study was made of ankle replacements and it was reported that approximately 9% of similar replacements incur infection."

"Would I do it again? IN A MINUTE! Yes, there is pain. The recovery has been longer than many others. But, three is hope (and expectation) that I will again be pain-free and not encumbered by an ankle that will never be normal. We have seen stories on this site of many competent ankle surgeons. I would add Dr. Horton at KU Medical Center to that growing list."

Tom, Branson, MO.
August, 2010

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"My ankle was badly broken in 1989. The surgical repair worked well and lasted about 17 years, a bit longer than most people get from that surgery. When post-traumatic degenerative arthritis set in, it came with a vengeance. Unknowingly, I finished off the cartilage in my ankle joint on the stair-stepper machine at the YMCA thinking I was helping that wonky ankle! Things got so bad that my foot had actually begun to turn. Walking was very painful and my mobility was dwindling down to almost nothing. I was not interested in having my ankle fused, as doctors here suggested, as my ankle seemed to be fusing itself, becoming more and more frozen."

"Fortunately, through research, I found Dr. James DeOrio at Duke, and he installed my total ankle replacement in October 2007. I think I am doing really well, at least thus far. I am so, so grateful to have my life back! Getting back into my garden was so wonderful. That old wheelchair is now parked in the garage under a rug and I think the cat sits on it. It was fun discussing the details of recovery with the dear Blessed Ankles because my friends here were all just totally amazed that such an ankle procedure was even possible. They couldn't relate to 'toes above your nose' and 'elevate and ice.'"

Gay, Atlanta, GA
September, 2008

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UPDATE to Gay's comment:

"Just a note to let you know how well I am doing with my total ankle replacement that was installed by Dr. James DeOrio at Duke in October of 2007. I am coming up on my three-year post-op evaluation and am doing just great! Dr. DeOrio advised me that I would likely not get full benefit from my TAR procedure until about two years post-op and looking back, I believe that was about right. I can now wear small heels and am not confined to flats."

"At this point, I know now that there are only so many miles per day in my Salto Talaris ankle. There is no pain if I happen to over-mileage, I just get very tired and am glad to sit down and put my feet up. Once in a while if I have had to be on my feet for a long period of time I will experience a little swelling, but that does not happen very often. My ankle is usually back to normal by the next morning. I have no trouble whatsoever doing the backing and forthings of my regular life and am grateful every day that I am able to do what I want. I know that high impact activities like tennis and jogging are out, but that is okay with me! I am able to garden and do the shovel work myself and so that is my new standard and I am very happy with it."

"There is no doubt that my total ankle replacement has literally given me my life back. And, it has also given my sweet husband HIS life back as well. He is a big outdoors man and when I was so crippled he refused to leave me. I am so glad he was able to get back to his fly fishing and kayaking trips."

Gay, Atlanta, GA
August, 2010

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"I have had a history of muscular/skeletal problems since I was hit by a drunk driver as a pedestrian when I was 18 years old. I was thrown into the air and barely survived. There was severe damage to my left leg. After surgery to repair my leg, I was in traction for 6 weeks, and did PT and wore a brace for about a year. Following the year-long-rehabilitation treatment, I appeared to recover completely and was active (playing tennis, etc) for about 20 years. By my early 40s, I began to experience regular 'traumatic arthritis' pain in my left knee and I finally had a knee replacement 35 years after the accident. Once I started walking again after the knee replacement, I started to have a series of other arthritic problems. The most significant problem was my ankle.

"For about 10 years, I had great stiffness in my ankle in the morning and when walking and I had numerous flare-ups of severe pain. These flares were calmed in the beginning years by a series of cortisone shots. I also tried a variety of options for the ankle: I received PT, was fitted for orthodics and an ankle brace, and regularly went for acupuncture treatments, and exercised in a warm pool.

"By the last year before my ankle replacement, my ankle became terribly swollen, painful, and stiff all the time. I could barely walk at all and started using a wheelchair when I went out. I started living on Tylenol with codeine or I couldn't get out of bed!

"Over the years, I had been advised by orthopedists that ankle replacement was too new, too untried, and really didn't work well. I had always been told by them that ankle fusion would be the best option for me. I was told fusion would relieve my pain, but I should put it off as long as possible as it would have other negative effects on my body. Because the fusion would eliminate ankle movement, orthopedists warned that I would have trouble with the knee replacement on that leg AND my feet and other leg joints might also be negatively affected as my walk changed.

"So, over 10 painful years, I had been putting fusion off as long as possible. But I was prepared to do it in 2008 and went to see an orthopedist regarding that procedure. Much to my delight, Dr. DeOrio of Duke University (and another orthopedist I went to see for a second opinion) suggested that ankle replacement would NOW be a good option for me.

"I decided in March to get the surgery and it was scheduled for May 2008 with Dr. DeOrio. I ran into a major problem, however, when my insurance company, Blue Cross/Blue Shield of NJ, did not give pre-approval for the ankle replacement. They didn't deny either, but they kept saying they were considering it. When I hadn't gotten approval by mid-April, Dr. DeOrio's staff and I decided we had to cancel the May surgery date as I couldn't afford the $45,000 cost out-of-pocket!

"I finally realized why BC/BS had delayed the approval when I turned 65 in June. The very good news for me is that it appeared that Medicare would pay for the procedure --and I am sure BC was happy to have avoided the charge! (I don't know yet the extent of any financial obligation on my part, but so far, it looks good!)

"My ankle replacement surgery was done at Duke by Dr. DeOrio in July. The immediate recovery was difficult in that one has to keep 'toes above the nose' for a 6-week period while wearing a cast and no weight can be put on the foot. When the cast came off, I started walking with a walker and, at 2 months was walking with a cane.

"I am working with a physical therapist, however, to get back as much movement as I can in the ankle and in my legs in general, after walking poorly for at least 5 years.

"I am thrilled now - at 12 weeks post-surgery as I can walk without pain in my ankle. And, I expect to be doing better over the coming months. YES! It is a miracle and that's why we call our group the 'Blessed Ankles'."

Andrea, Carrboro, NC
September, 2008

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"There are heroes walking among us. Some you meet everyday with little notice, and some you meet by chance.

"The meeting of my 'hero' was purely by innocent chance. My hero granted me the one wish I was told I would never again be able to do comfortably. He gave me the ability to walk again, without severe pain!

"My name is Victoria. I am 53-years young and living with Avascular Necrosis throughout all of my major joints. I have severe AVN within my ankles. I had been to many doctors, sent to all of them by my orthopaedic doctor at the University of Miami who replaced both of my shoulders because of AVN. Out of the four doctors that I visited, 3 wanted to amputate both of my feet to arrest the AVN, and one wanted to fuse both of my ankles, which could mean further problems down the line with the AVN.

"My little aching, barely-able-to-support-me ankles couldn't make my feet move fast enough out of those doctors' offices! Oh, my aching ankles carried me back to the University of Miami and a strict talk with my physician. He had to find me someone who would not recommend amputation or fusion. Those options were simply not my cup of tea!

"He researched several various doctors out there, and recommended that I make an appointment with the Mayo Clinic in Jacksonville, Florida. I called to schedule an appointment, only to be told that the doctor who specialized in ankles was no longer on staff.

"Needless to say, disappointment set in, but with the miracles of miracles known as the Internet, I quickly found that the doctor from the Mayo Clinic was now working at Duke University!

"I called and scheduled my appointment. I waited nearly three months for an opening and much to my surprise, I was not disappointed. My first appointment on October 17, 2007 was with Dr. Nunley, who told me that his colleague, Dr. James DeOrio, would look over all of my x-rays and MRI's and see what he could do.

"Dr. Nunley was my first saving Angel. He gave me Hope. At that first appointment in October, he told me that I could go on the schedule for surgery in February if Dr. DeOrio thought he could work with my aching and collapsing ankles. By the time I saw Dr. Nunley, I was in a wheelchair full-time because of the pain in my right ankle. I came back to Florida from my 'hope trip' to North Carolina filled with HOPE.

"By the time I returned home, there were no less than six telephone messages from Dr. DeOrio's assistant. It was urgent that I return his calls immediately. So I did, and much to my surprise, Dr. DeOrio, my second saving Angel, stated that I 'must have surgery immediately if I am ever to walk again.'

"I jumped at the opportunity! He scheduled my surgery for November 8, 2007 at Duke University in Durham, North Carolina.

"I didn't care what type of ankles he was going to implant into my 'broken' ones, but I wanted anything that would help me WALK AGAIN!

"Dr. DeOrio delivered exactly what he promised! That was no pain and walking upright within a matter of a few short months.

"My left ankle still needs to be replaced and that will come in time. For now, I am enjoying the best year ever, in a very long time.

"Thanks, Dr. DeOrio, for being my Angel of Courage. Thank you for everything you have done for me. You truly are a hero with gifted hands and the knowledge to help someone like me who had the intense desire to walk again.

"You and Dr. Nunley answered my prayers and as I have found out, you have answered the prayers of many patients, just like me!

~I am a happily walking "Blessed Ankle."

Victoria, Port St. Lucie, FL
AVN both ankles, InBone recipient with minor fusion on Right Ankle
September, 2008

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