Surgery Updates - 2015

So far this year I have had 3 surgeries and am currently in the planning phase for another. I have had 21 surgeries to date. All of the surgeries so far have pertained to my spinal cord nuerostimulator. The pocket that the battery reservoir was in made it difficult to reach, especially after my surgery, as well as I was having issues getting it to pair with the charging unit. It made charging difficult and very lengthy. After trying different techniques for the first couple months with it in, we decided to go ahead and do a pocket revision. The surgery would be more simple because the leads where already placed, so it was just moving the pocket from my right lower shoulder-blade to my right side. The procedure was scheduled for January 20th as an out-patient. My pain doc, Dr. Wellington, would even be able to hide the additional incision inside my tattoo.

Nuerostimulator Pocket Revision

The original surgery and healing went very well except for the need to later revise the pocket, there where no complications or issues. Unfortunately, this time around was not that simple. Within 18 hours the incision was showing signs of infection. It had become red, hot and more painful very quickly. When originally talking to the nurse, she said that it couldn't be an infection because it typically takes a couple days for an infection to set in. Regardless, he doctor wanted to see pictures right away. I sent him pictures around 1pm and within 15 minutes he was on the phone with me. He asked how soon I could be downtown because I needed surgery right away to have the implant and leads removed and cleaned out. It looked like an infection had already set in and was rapidly spreading. 

My doctor wanted me downtown at the hospital immediately because he had an OR waiting for a 3pm surgery. He informed me that I would also need to quickly pack a bag because I would need to stay overnight at least 2 nights while cultures and tests ran as well as receiving IV antibiotics. I was terrified because of the severe infection I had summer of '13 and the amount of time I spent in the hospital and on medications, not to mention that this left a route open directly to my spinal cord susceptible to infection. My bag was still packed from the previous day as a precaution so we left immediately. I have never been rushed through pre-op so quickly. I had also hardly eaten all day so getting an IV was difficult. They put the line in while in the OR and I was already terrified and in tears. It took 2 docs and an ultrasound to finally get a line started and medications going. My doctor held my hand the entire time while they prepped because I was scared beyond belief. I also couldn't believe this was happening. I was afraid I was going to forever lose the relief I received from my stimulator and that medications would be my only option going forward. I was reassured that I would be able to get another implant once in the infection had cleared. There was still hope despite being absolutely terrified. 

I stayed in-patient for 2 nights on IV antibiotics. I was sent home with oral antibiotics for another couple weeks. They where glad that they where able to catch it so quickly, but it brought up another issue of possibly being immune deficient because of the rapid onset. That is still being investigated. With the stimulator out, my nerve medications had to be increased temporarily. Nerve medications take time to re-adjust to and do not have fun side effects. My RSD/CRPS also flared because of having the stimulator removed, the infection and then back on higher medication doses. It was a miserable couple months with all the changes. I was excited to have my stimulator back in and with insurance approval we where finally able to re-implant the neurostimulator on March 4th. We took extra precautions with prophylactic antibiotics, incision closures, etc., to reduce the risk of another infection. We also decided to move the pocket from the former right side to my left side to avoid the prior infected area altogether. Fortunately, this time around was successful on all counts. I healed well and the unit was charging easily and providing great relief! It was worth it all to have it back and working amazingly!!!

The next surgery is currently being planned. It would be for my left hip and femur. I have borderline dysplasia combined with a retroverted femur, excessively externally rotated. I also have another labral tear, hip flexor tendinosis and bursitis. The last surgery was only meant to be temporary and while it proved relief for about 18 months it is now time to fix the underlying issues. My joint space itself still looks good with minimal arthritis so it is better to fix the issues before the joint is deteriorated to the point of only having a THR as an option. I went out to see Dr. Millis at Boston Children's Hospital for a consult. He also had me see his colleague Dr. d'Hemecourt who is a sports physiatrist for a dynamic ultrasound and injections. We did determine that there was a lot of soft tissue inflammation and overcompensation, but that there where structural issues at play. Prior attempts of less invasive options had failed so we where looking at other approaches. Millis wanted to allow the injections time to work as well as continue PT. If we decide to proceed that a femoral varus rotational osteotomy would be the preferred option over a PAO, since he believes that the retroversion with my tissue laxity are the sources of pain than the borderline dysplasia.

My local hip/shoulder surgeon, Dr. Dierckman, decided to further specialize as a hip preservation specialist and has left for another fellowship. It is bittersweet because I am very happy that another talented surgeon will be doing hip preservation, but I would be losing my local surgeon who has been so amazing in taking me on as a patient. He has been training with Dr. John Clohisy in St. Louis and has presented my case to him. He wants me to see Clohisy and to get his opinion on the case as well because he believes that I could benefit from a PAO instead. He would like to also see it fixed before more damage is present. I am hoping to hear back from him soon so I will be to find out what Clohisy's opinion on the case. Fingers crossed to know more soon!

Surgery Updates - 2014

Surgeries are a normal aspect of my life. Surgery will be a maintenance aspect of my life. I had 3 surgeries in 2014. The break from my last surgery in 2013, which happened to be the last day of the year, till I had surgery in 2014 was a long break for me of 8 months between surgeries. For most people that would not seem like enough time at all, but for me it seemed like forever and was a nice break. I was actually able to enjoy my summer a bit.

The first surgery of 2014 was yet another right hip surgery. It made #8. The reason for so many right hip surgeries started because of a botched PAO. I was having groin pain, lateral hip pain and when my hip went into extension, abduction I would experience a very audible "pop" with associated searing pain. But, unlike "snapping hip syndrome" that deals with the hip flexor snapping causing an audible pop, this was occurring in the posterior aspect of my hip. When my local surgeon tested my hip and heard it for himself he was almost certain that it was my hip coming in and out of socket. Dierckman had seen me through 6 surgeries in 2013, but with the complexity of the right hip I needed to see someone who dealt with complex arthroscopic revisions. Doing another traditional open operation on the right was higher risk due to my infection and healing history. I was referred to a colleague of his in Chicago, Dr. Benjamin Domb at Hinsdale Orthopedics. Domb's partner, Dr. Justin LaReau, happened to be a former fellow of Dr. Millis. Millis also recommended Domb for a scope revision. Having both of my docs recommend Domb reassured me, despite mixed opinions I had heard.

I spent almost an hour in the consult with Domb and when he tested my hip and experienced the posterior audible "pop" he replied, "holy shit!" Not quite what I was expecting, but he had never seen anything like it. Being a "unique" patient was nothing new to me. Despite the complexity of my history, he was willing to take on the case and revise the hip. But, he did make it clear that revising this hip would be doing a "Hail Mary" because it would be a fine line between making my hip better or worse. We would do a majority arthroscopic and endoscopic with a small open femoral revision. About 2 weeks before my hip surgery I was diagnosed with stress fractures in my left shin. So, not only would I have a hip brace post-op on my right side, I would also be wearing a walking boot on my left leg for a few weeks.

The surgery was scheduled for 2 days after my birthday on August 8th. The procedures would include: right hip arthroscopy with labral repair, Pincer resection, femoroplasty, capsulorraphy, gluteus medius repair, open femoral trochanteric resection. The surgery took place at Hinsdale Adventist Hospital in Chicago, IL. I stayed in-patient for 2 nights. I spent 3 months in a hip brace and on crutches. Although the restrictions made it tough to get around, the pain was much improved and I could feel a positive difference almost immediately. My incisions healed nicely and I was excited to not have developed any infections.

     

The next surgery of the year was to trial and place a spinal cord neurostimulator. I had been dealing with RSD/CRPS in my right foot and leg for over 5 years. I was on multiple daily nerve medications and the effect was physically draining and I had not seen a lot of improvement, nor did I look forward to the prospect of being on these medications for the rest of my life. My pain specialist, Dr. Wellington, suggested trying a spinal cord stimulator. He was surprised by the fact it had not been suggested prior. He also knew that with my hip surgeries that I needed the ability to have imaging like MRI's. The newer stimulators where MRI-compatible and would allow me the benefit of the technology without hindering the need for future imaging. 

 Neurostimulator Implant Trial

He had several patients in similar situations with great results. I would even be able to trial the implant for 5 days prior to the permanent being placed. A "try before you buy." The goal would be to control and reduce the pain without further medications. A majority of patients where able to greatly reduce the dosages of medications and some where able to eliminate the need for meds altogether. It was something I was definitely willing to try and was hopeful it would work. The trial went amazing and we all concluded that the permanent implant would be perfect for me. I had the spinal cord neurostimulator implanted on October 21st as  an out-patient procedure. 

My last surgery of the year was a right shoulder revision from the previous year. My left shoulder was still holding strong, but my right had already become unstable as well as had a labral re-tear. We would approach this surgery a bit different by tightening more (if that was possible) and would use anchors to repair the labrum and for the capsulorraphy. We also where going to do 6-8 weeks in the immobilizer instead of 4 weeks, as well as little to no activity so that the shoulder would heal as tight as possible. I was fortunate and it was completed arthroscopically and able to be done as an out-patient procedure. We always plan for an overnight stay, but the regional block had worked very well and my pain was minimal, initially anyway. The recovery itself was harder and more painful than I remembered. Also, it being my right shoulder doing anything was very difficult. The surgery itself was successful and my shoulder was much more stable. 

Although the surgery was successful, we know that these procedures will only be a temporary measure because the EDS will cause the tissues to breakdown and instability to re-occur. But, by maintaining physical therapy and staying fit, the hope is to have the muscles help compensate for what my joints can not naturally do. We are hoping to have as much time as possible in between surgeries as possible. The next step surgically would be an open reconstruction which would be much more invasive and a drastically longer recovery. For now, the shoulders are stable and the need for more is not on the horizon. 

The PAO Project

It has been too long since my last post, but I thought this would be a good place to start. The PAO Project was started by a "hip" friend as a way to be a source of information from the patient's perspective. It's also a way to provide resources for those diagnosed with hip dysplasia and about to embark on PAO surgery and recovery. If you would like more information or to submit your own PAO story check out the link: http://thepaoproject.com

The following is My PAO story that I submitted to the project entitled "My Story Has Only Begun..."

Hi! My name is Ashley Spalla and I am 27 years old. I was 21 years old when I was diagnosed with bilateral hip dysplasia. I never knew I had hip dysplasia and had been a very active child growing up. I continued a high level of activity into college which included distance running, CrossFit and Army ROTC. I knew something was wrong after I experienced searing hip pain during an ROTC basketball tournament in January 2009. After an MRI I was diagnosed with hip dysplasia, labral tear and ligament tears. I was more than terrified and the lack of available knowledge only worsened my anxiety and fear. I had my RPAO in June 2009. During my PAO journey I was also diagnosed with a rare connective tissue disorder called Ehlers-Danlos Syndrome, Classical type. I have endured 21 surgeries total, 11 on my hips and 8 of which where on my right hip. My right hip has undergone a PAO/scope, arthroscopy, hardware removal/revision, femoral varus rotational osteotomy, trochanteric osteotomy, femoral hardware removal with revision, infection IND and arthroscopy/hybrid open surgery. Little did I know that this would begin a journey I could have never anticipated…

For as long as I can remember I have been an athlete. I grew up doing gymnastics, playing softball, basketball, running and competitive cheerleading in high school. Being an athlete was part of my identity. When I went off to college to study biology and pursue a career in medicine I used running as a form of therapy. Being active was a normal part of my day, just like eating or taking a shower. I was also familiar with the injuries that came with an active lifestyle. I had always pushed myself both physically and mentally. 

I wanted to take my abilities to the next level, so my Sophomore year of college I enlisted in the Army and joined ROTC. I spent that summer at Basic Combat Training (BCT) and Advanced Individual Training (AIT). In the fall, I continued my Army training through ROTC to become a U.S. Army officer. The winter of 2008-2009 I decided to join our intramural ROTC basketball team for fun. Our ROTC teams played in a tournament at the University of Notre Dame in January 2009. My body and hips where sore, but nothing I didn’t chalk up to training. The tournament was rough physically and I had stabbing and searing pain through my right hip. I tried giving my hip time to recover, but it made no difference.

I knew something was not right with my hip and decided to go to my sports doctor. At most I thought I tore cartilage and would need my hip scoped, but little did I know that torn cartilage would be the least of my problems. I had an immediate MRI and within 24 hours my doctor called me back with the results. I knew with that quick of a response the news was not going to be good. He told me I had a torn labrum, labral cyst, soft tissue tears and hip dysplasia. “Hip dysplasia!?” I replied. “Like a German Shepherd!?” He also told me that this is something that will require surgical intervention and referred me to a hip specialist. After meeting with him he told me that treating hip dysplasia is much more specialized and is not something he does and only a handful of surgeons treated. I was also told that I was fortunate because there was a local hip surgeon in Indianapolis who could correct the dysplasia.

It took a few weeks to get into this surgeon for a consult. In the meantime the anxiety ran rampant as did my searches on the internet for more information. It was not encouraging when the first searches pertained to canine hip dysplasia. There was little information about adult hip dysplasia. No Facebook groups existed, support cites or foundations available to turn to for help. I felt so alone and so angry with my circumstances. The pain and symptoms in my hip deteriorated rapidly. Sleep was difficult, even getting in and out of my car was horridly painful. I felt as if everything I had worked and trained for was in vain. 

My consult with the specialist came and went and surgery was scheduled for the summer. I would have my hip socket broken, rotated and screwed back into a position that would allow adequate coverage of the femoral head, which would ultimately give me more stability and preserve my joint. No big deal. The pain was getting worse as was my apprehension about the surgery. Just talking about the surgery made me break down into tears. Depression and anxiety had set in and I got to the point that I needed help coping. It was at that point that my primary care physician prescribed Prozac to help ease the highs and lows. I tried my best to prep  for the surgery by getting items for the hospital and things to help during my recovery. 

Surgery day came and I was a nervous wreck. I did not sleep at all the night before. My parents where able to stay with me while I was being prepped and waited to be wheeled back to the O.R. I was able to hold it together until I was taken back to the O.R. But, as soon as I went through the doors and saw multiple surgical tables, tables of equipment, my two surgeons and a ton of surgical staff, I panicked. I began crying hysterically and hyperventilating. They didn’t even bother waiting to put me under until I was transferred and positioned because I was so upset. It’s the last thing I remembered till I woke up briefly in PACU, then in my room.

The hospital stay was brutal. It was the first time I ever needed to stay overnight in a hospital. My leg was huge due to swelling because no drains where placed. It took weeks for the swelling to even reasonably subside. Pain management was extremely difficult. I did better in PT than I anticipated, but every movement was excruciatingly painful. I couldn’t believe what I had gotten myself into and if I had made a huge mistake. I spent five nights in the hospital before being discharged to my parents house. The only time I saw my surgeon was in pre-op and the day I was discharged. 

The problems developed immediately post-op. The swelling alone took months to resolve. I also developed nerve pain and issues that would later be diagnosed as CRPS (Chronic Regional Pain Syndrome) and required special medication to help calm the nerves. My surgical incision had some staples, stitches and glue. It also took nearly three months to completely close and heal. But, 4-5 months post-op the pain increased and I had developed stress fractures despite still needing the aid of crutches to walk. One problem after another and pain that never really seemed to go away. 

About a little over a year post-op the pain had not ceased, so my doctor decided to re-scope the hip. My hip actually needed more repairs due to extensive damage following my PAO, when my activity level was minimal, than prior. I was frustrated because I thought the entire purpose of the PAO was to prevent this exact issue from occurring. After speaking with some other PAO warriors and doing some research I found a research paper that explained the PAO process, failure rates, symptoms of failed PAO’s, etc. It was conducted by the physician who created the PAO or Ganz Osteotomy, Dr. Reinhold Ganz. My symptoms fit everything listed in the research paper. I was dumbfounded. I could not believe this was happening. It also meant that completing ROTC and commissioning as an Army officer would not be possible. It was the end of a dream and a reality I was not prepared to face. 

I ultimately found out that the surgeon who performed my PAO was not a trained hip preservation specialist, nor had the experience he told me that he had. The hip surgeon who referred me at first told me that he was unaware that the doctor was not trained, but when speaking with him at a later date told me that he did not inform his patients of other trained surgeons in places such as St. Louis, Detroit or Boston because  he “did not think his patients would want to travel for care.”  I was furious and devastated that my ability to choose had been taken from me. I was a very angry and resentful person for a long time. I was also deeply hurt that my trust had been violated by people who should have been looking out for my best interest. 

To even begin to fix my hip I did endless research and decided to see the best. I scheduled an appointment to see Dr. Millis at Boston Children’s Hospital. Dr. Millis quickly realized there was more than a botched surgery to overcome. He had me see a geneticist and I was diagnosed with Ehlers-Danlos Syndrome, which is a connective tissue disorder that causes a defect in the collagen and tissues of the body. It causes joint hypermobility, instability, poor healing, delicate skin and even heart and vascular issues. It was contributing to the myriad of issues I had been enduring, but had been overlooked by other doctors as “weird” until Dr. Millis.

I have now been a patient of Dr. Millis for over five years and have had twenty-one surgeries total; eight surgeries on my right hip alone. The most recent of surgeries was last year with more in the planning phases. Surgeries will always be needed for maintenance. I have been a staple at my PT clinic and my physical therapist has become a friend and supporter as I have endured surgery after surgery.

I started my PAO journey 6.5 years ago and it has forever changed my life. My hip journey is not finite, but I am determined to continue doing what I love and to never let anyone tell me never. This journey has taught me that I am stronger and more capable than I ever could have imagined. It has taken years to come to a place of acceptance and peace with my circumstances, but there are days that I still struggle. This journey has reignited my love for science as well as a desire to raise awareness and further hip dysplasia research. My story has only begun…

“Hardships often prepare ordinary people for an extraordinary destiny.”

C.S. Lewis