My name is Suzanne and I was born in 1950 with bi-lateral club feet. Immediately having casts with the bar inbetween my legs I was treated until I was three. Then came the years of the ugly brown man looking shoes. At the age of around 8 or 9 my left foot had surgery to release my Achilles tendon. Wearing the corrective shoes until I was eighteen my feet became completely corrected. As you all have dealt with the harassment in school and being made fun of for being different ,that is what true bullying is about. You live with those memories forever. No issues my entire adult life until I reached the age of around 60 or about 8 years ago. I had fallen and twisted my ankle on an icy front lawn followed 6 months later when the dog made me fall down 2 steps on my porch at which time a toe on my right foot broke.
Shortly after those two events I noticed my toes looking odd. Over the next 4 or 5 years I slowly was noticing my foot curving inwards. One day while trying clothes on in a stores floor length mirror I looked down and saw a horribly deformed foot. As you can see the extent of the curvature. This was my foot at it’s worst right before I had surgery to correct it on May 15th of 2017. Over the course of about four years I consulted with 5 orthopedic surgeons. They all said the same thing. They had never seen a foot this bad and they all wanted to fix it by fusing my big toe.None of the 5 knew what caused it. I told everyone about my club feet at birth. The tiny bones across the top of my foot started breaking a little at a time. I always knew my foot was in motion because I felt the broken bones for about 3 to 4 days and then the pain would subside. I was having it monitored every time I knew it had moved if even just slightly. I would have an x-ray and it would be measured as you see in the photo. When I turned 66 I found a surgeon here in Atlanta that I was referred to. I checked out his background and saw that he worked at some point at Shriners Children’s Hospital. I knew if anyone was going to know what was happening it might be him. I assumed he saw many a child at Shriners with this deformity. I remember the first time I saw him I asked if this could be a reoccurrence of my childhood club feet. His answer was “I know how to fix it I am not a detective”. He also was the first surgeon who did not believe in fusing the big toe with a rod. He said I would never walk the same and it would affect both my hips and my back. His plan was to put in the rod and other pins that would be removed after the toes healed in place. I liked that idea even if he didn’t know why my foot did this.
On May 15th of 2017 I had the first of four surgeries. He started by stabilizing my heel and ankle and also did a tendon transfer from my calf into my arch where the tendon ruptured. He shaved down bone on the outside edge of my foot at my ankle. During the first surgery I had a full hard cast on although my toes were exposed. A nerve block was done at my thigh with a tourniquet placed just above my knee.
When the Anesthesiologist put that needle into my thigh and put on the tourniquet I knew something was not right. It hurt like crazy. I was fully alert as I like to remain that way until they actually take me into the O.R. Surgery took about an hour and a half it was performed at the doctors own surgery center. Two days later when the nerve block wore off and I was back to normal I noticed that my toes (which were exposed from the cast) no longer moved. They had a feeling like they had been dipped in glue and the glue dried. On my first cast change I mentioned this to the doctor. Over the course of a year I was given every excuse in the book, frozen toes and the weird sensation was from the swelling, the stitches, the cast. Until the Physicians Assistant said “we may have nicked a nerve”.
On June 26th of 2017 I went in for the second portion of the reconstruction. This time he would straighten my toes and the curvature in my foot. I spent a total of almost 6 months unable to put any weight on my leg and foot. I was in a wheelchair the whole time. But every time I would go in for a cast change I would tell them my foot was not improving. An important fact is that during surgery number 2 I refused to have the nerve block. My husband tells me I was in excruciating pain on the ride home. This was done in an independent surgery center and they released me as soon as I woke up in the recovery room. Both mu husband and the O.R. head nurse commented how I was cursing in the recovery area saying that they should have insisted that I have the block. I posted this on my personal blog in a story I wrote about the procedure 6 months after the first surgery. Long before I was to find out that I have severe permanent damage to the nerves in my entire leg and a permanent paralyzed foot. I was diagnosed on January 9th of this year with Reflex Sympathetic Dystrophy. A rare disorder caused by a single incident usually an accident or surgery. It is a permanent condition with no cure and will eventually worsen.
They all told me I needed to be patient in my recovery and one Neurologist said I should not expect any improvement for at least 18 months. I did not want to be unreasonable so I waited hoping for an improvement. In August of 2018 with the original pins in my toes already removed in August of 2017, I went back to have the two screws from my ankle removed as they had shifted and one was ready to come through the skin. Extremely painful especially trying to climb up stairs. With my foot and leg worsening I found another Neurologist. I could not get an appointment until November of 2018. On that visit he gave me the RSD diagnosis after examining my foot. It no longer moves and has been that way since the first surgery. , I have altered feeling between hot and cold. I no longer can feel heat on my foot just excessive cold. My toes are like five ice cubes. My toes are discolored along with atrophy of the muscles in my foot. He told me to never have anyone touch that foot. He scheduled me for an EMG test (a nerve study) their next available appointment would be in January. On January 9th I had the test done. It is very painful as the technician first gives you individual electric shocks all up and down your leg and foot. Then the Neurologist checked the muscles inserting a needle into various spots all over your legs then zaps you with an electric impulse. I had my physical therapist in attendance. The doctor was able to immediately give us the results. Stating that the thigh injury occurred from either the Anesthesiologists needle hitting my femoral nerve during the nerve block or she put the tourniquet on too tight and it killed the nerve This damage came from the trauma of the surgery and he made that very clear.When asked what happened to my foot he said “it happened during the same event” The surgery. He told my physical therapist that I would eventually need a leg and foot brace because the nerve damage will atrophy my leg muscles, like it has already done to my foot, causing my leg to buckle.
5 days later he decides to change his mind over his diagnosis. I was sent for two MRI’s one of my lumbar spine and another of my ovaries and uterus. Yes we were all stumped over that one. Being 68 the lumbar spine showed aging issues but everything was reported as being “mild”. Both my physical therapist and my primary care doctor said that the MRI results did not support his changed diagnosis that my paralyzed foot was coming from a bad back. That doctor refuses to talk to me to discuss the MRI’s his office will not give me an appointment to see him in person.
Back to the foot surgeon. I have all the medical records from day one. He has falsified those records showing that during surgery number two when he worked on my toes, I had a three hour nerve block. I did not have a nerve block and was able to prove it by having two witnesses who were in the recovery room and by comparing what the Anesthesiologists charges were. My insurance companies confirmed she charged $850. less during surgery number two, or the surgery where I refused to have the nerve block. His records clearly show a nerve block was done. It was not done. Yes I have consulted many attorneys after I found out on January 9th about the massive damage this doctor has caused. The attorneys are declining me left and right using the reason that this nerve damage, this paralyzed foot was caused by my childhood club feet. He has added that to the records after he performed the first surgery. I am devastated and I am suffering more mentally then physically. A very active 68 year old, heck I drive a Corvette and my life basically has come to an end. I barely leave my house as I can not walk more then a few feet. No more traveling with my children and grandchildren. No more cooking which is my passion. I can not sleep from the pain and the claustrophobic feeling of not being able to move my foot. They call it drop foot. When I walk I either have to slid my foot or if I attempt to lift it It sounds like a seal flapping as it hits the floor. I can not wear shoes other then soft converse sneakers. I can say it is truly a nightmare.I pray to God this never happens to any of the people on this sight who has suffered from this deformity.
Thank you for letting me vent. No one knows what this feels like or knows what I am going through. The pain when you have RSD is intensified. The pain is actually worse then the original pain you tried to fix. If someone told me tomorrow that I have cancer and only had 6 months to live I would actually be relieved. I can’t imagine having to live with this for possibly the next 15 to 20 years. I will be filing a complaint with the state medical board. Altering or falsifying medical records is a felony. God bless all of you who had or has club feet. I feel your pain and I truly hope that none of you ever has to deal with something like this. thank you again.