TWENTY-TWO

September is coming to an end and the feel of Fall is in the air. The nights are getting crisper, the leaves are starting to turn colors which means it's the season of sweaters and ... another surgery!

This will be surgery #22 for me. I spent the end of July in Boston undergoing diagnostics and discussions for a left hip surgery, but at the end of August I had a freak accident and dislocated my left shoulder. It had been stable since my only left shoulder surgery in January of 2013. I re-stretched out the capsule and re-tore the labrum. It has also aggravated my neck instability and I have been experiencing horrid positional headaches. I am also waiting for a neuro consult for my neck and neuro symptoms which may result in a cervical fusion. Now I will be having a shoulder surgery first, waiting to hear back from Boston about my hip surgery and waiting on a neuro consult.

While most people are looking forward to pumpkin-flavored everything, sweaters, boots and football season, I am planning another round of surgeries. I had expected and planned on the hip surgery, but the additional surgeries make me feel like my feet have been swept out from under me. I am spending my weekend doing my pre-surgery ritual of cleaning and prepping my apartment and bedroom, making sure I have all my wound care items stocked, ice packs, extra pillows, my dog groomed and trimming my hair and doing my nails. I also picked up a couple extra comfy clothing items that are lose and easy to get on for my recovery. I also have my overnight bagged packed. It is suppose to be an outpatient surgery, but with my EDS I have issues with blocks not being effective, issues with anesthesia, etc. So we always plan for the extras in hopes of not needing them.                      
                                                                  
This is surgery will also be a first with Dr. Badman for me. He was my former local doc's (Dr. Dierckman) colleague and is very skilled in shoulder and elbow injuries, etc. I am seeing Badman because Dierckman returned to LA to pursue a hip preservation fellowship. It is a bit nerve racking for me to be with another surgeon because Dierckman knew me well and we had our surgical routine down. It is also a different facility than I am use, so it adds another layer of unknowns. You would think after 21 surgeries that I would be use to it, but the anxiety always sets in. I am very aware of what can go wrong, complications and the good/bad. I am hoping this goes well     because if either shoulder becomes unstable again it will mean a very invasive and open shoulder reconstruction.

I am scheduled for a left shoulder arthroscopy to repair a torn labrum, reconstruct and tighten my capsule and address any other issues or damage to the joint or surrounding tissues. My surgery is first thing Tuesday morning, the 29th. I have to arrive at 6am for a 7am procedure. I will be his first case of the day, which I prefer because of the complications I typically endure. I am also nervous about the shoulder block they will have to which is called an interscalene block. Locals don't work well for me and it can be quite painful. Just getting IV lines in me is difficult, especially when the only arm they can use is my right since the left is being operated on. I realized I am a lot more nervous than I thought...

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

         

Another Year Coming to a Close...

It has been quite awhile since a post and has definitely been a crazy and unexpected year. 2013 started off with a left shoulder scope for me. My capsule was so loose you could nearly pull my arm out of the socket. I had over 8 sutures put into my shoulder capsule to get back some stability. I spent over 6 weeks in a sling and recovered with very good results. My left shoulder has felt more stable and "normal" than it has in a very long time. In January, I also had an appointment with the genetics clinic at Cincinnati Children's Hospital. It is one of the largest connective tissue disorder clinics seeing 800-900 patients per year.

 http://www.cincinnatichildrens.org/service/c/connective-tissue/default/


I spoke with a geneticist about my EDS and different treatment options. I was referred to a specialist who treats TMJ syndrome in EDS. I post-poned seeing the TMJ specialist because after my shoulder was repaired and more stable, my neck and jaw were not nearly as irritated and requiring immediate attention. The geneticist also explained that my EDS was more severe than originally thought as well as I displayed certain crossover signs of Hypermobile EDS.

I started out the year thinking I would immediately have my left hip surgery and was in contact with Dr. Millis to begin the planning process for a combined FO and scope, but after a lot of contemplating I decided to hold off on surgery on my hips. I went forward with the shoulder because I began waking up with more and more dislocations. After discussing my options with my local OS I decided to post-pone any hip surgeries till I could max out my physical progress and strength. I eased back into running and training and by June was running about 3.5 miles per workout and up to a dozen miles a week. I even did a practice PT test and ran a 2 mile in under 18 minutes. I was also granted a waiver to stay in the Army with a profile that gave me an alternative cardio event for the PT test as a compromise and to help protect the surgeries to my legs, but also developing further injuries. I would be deployable, but just have an alternate APFT event. It was years of surgeries and rehab, but I was finally back to an active training status.


Late June would change my physical status. I developed a small area of skin breakdown from running and training, but nothing I had not dealt with because of EDS. I kept the area dry, clean and protected, but despite all attempts I developed an infection. I went to the ER after a work shift and seeing that the area had doubled in size knew that I couldn't wait. I explained my health issues and that I didn't heal, but despite my efforts was sent home with some antiseptic and antibiotics. I followed up with my family doc 2 days later and by then the infection had doubled in size yet again. An additional antibiotic was added, but the infection worsened over night and I was admitted to the hospital the following day for IV antibiotics and painkillers. I was on IV Vancomycin and Zosyn for a staph aureus and serratia. I was inpatient for 3 days and then released with another round of oral antibiotics. The wound healed and all seemed okay.

I went to my follow-up appointments and noticed more sensitivity and pain in my hip and femur where I had remaining hardware from my femoral revision. Dr. Millis and my local OS, Dr. Dierckman, decided that it would be better to take out the hardware in case the infection had seeded the hardware. The hardware removal was done locally on July 1st and should have been an overnight stay, but because of my RSD I developed a very bad flare and we were not able to control pain, so ended up being inpatient for 6 days with a ketamine infusion to treat the RSD. Between the first hospitalization and the surgery, summer courses had commenced and I had started my physio lecture and lab. Being in the hospital made making up work difficult, but I had managed. I woke up on a Saturday, 2 weeks post-op, and I was very swollen and had an excruciating pain. My incision looked great, so I thought I had somehow fractured my leg walking around. I was in so much pain, so I made my way back to the ER. I had a slight fever, a HR of 130 and an elevated white count. I was immediately admitted and further tests were run. I had a CT scan and hip aspiration which all came back that I had a relapse of serratia. Surgery was done the following morning. Unlike my other surgeries, it was the only one in where I did not have family or friends there, so it made the experience a little more nerve-racking. My parents where in Chicago because my mom was flying out to spend time with a new grand baby. Fortunately, my doc had my back and was doing this surgery so I knew I would be taken care of. He found that the infection was not superficial at all and the pockets of infection were quite extensive and all of the way down to the bone. He was able to clean out all of the infection and narcotic tissue, but I also ended up losing muscle tissue, making my right leg even more weak from all the surgery. I was finally on the mend. It was another week in the hospital and I left with a PICC line in my arm and IV antibiotics at home. Unfortunately, I only spent a few days at home until I was back in the hospital. Although I was not allergic to the antibiotic I had developed the severe side effects including severe dehydration and nausea that effected my potassium levels. I was re-hydrated, given nausea meds so I could eat and drink and the antibiotic was changed to one that we knew worked while I was inpatient. I ended up spending nearly all of July in the hospital.


The infection and complications made it impossible to complete my summer courses, so I withdrew and re-registered for the fall. I was even approved for a fee appeal for my summer tuition and expenses. The fall started off well, but ended up with quite a nasty cold mid-October, then ended up spending time in Boston to follow-up with Dr. Millis. It was great seeing him! I told him that I was pursuing PA school and he told me that I should choose ortho as a specialty and come work for him!!! It was such a huge compliment from someone I admire and respect. We also discussed the plan to fix my left hip. After the infections and summer in the hospital I ended up severely subluxing my left hip and it never recovered to the point I could return to training. We put the FO back on the table with or without scope, scope first, etc. We wanted to return to the idea of a scope in hopes that it may be enough to avoid an FO. Unfortunately, the type of instability and issues of my left hip where not well understood or had a clear treatment protocol. It would be quite experimental. I returned to my local ortho and we have decided on a hip scope with labral repair, cam resection, IT band release/bursectomy and open capsular plication. Dierckman specializes in hip arthroscopy, but the open capsular plication would be new for him. I am okay with him trying this out on me because I know he is familiar with my EDS and medical issues and what works best for me. Hip capsular plication can be done arthroscopically, but very few docs can do it. When it is done it is usually a few sutures and we know that it would not be enough for the type of stability I would need which is why we decided on the open procedure for the capsular plication.

I also will need my right shoulder reconstructed. It is beyond the point it can compensate and is actually worse than my left was prior to its repair in January. I had no labral tears in my left shoulder, but have extensive labral damage in my right shoulder. Between my left hip and right shoulder it has made sleeping and pain control near impossible over the last few weeks. For that reason, I will be having the hip surgery as soon as possible and the shoulder 6-8 weeks after that. It will conclude my year with 5 surgeries this year and 14 overall surgeries. Because of needing the surgeries and not enough time over Christmas break to do both surgeries because the hip surgery requires a brace, limited ROM and a month on crutches the two surgeries have to be spaced out. It will also make completing my fall courses near impossible. I am working with my professors on taking a W for the fall and starting over, again, in the spring semester. It is not my ideal situation, but both surgeries are desperately needed so this is what has to be done. I will keep trying and keep pushing toward my goals.

*Update: I ended 2013 with a total of 6 surgeries due to a superficial infection after my left hip surgery that required tweaking. It was a long year with 6 surgeries and 4 different hospitalizations. And in true fashion, the last surgery of the year was my right shoulder reconstruction that took place on Dec. 31st.

A New Surgical Experience

I will be experiencing a surgical first for me this week. I am having my left shoulder reconstructed this Thursday. Having my shoulder worked on is a first and although I am use to having hip and leg surgeries, the upcoming shoulder surgery is making me very anxious!

I have what is formally called Multi-Directional Instability with primary posterior and inferior dislocations. I am having a capsular shift procedure as well as my rotator interval closed, labral repair and any ligaments/tendons repaired as needed. It will be performed arthroscopically and I am scheduled to stay overnight due to anesthesia complications and pain management. I will be in a sling for at least 6 weeks, but likely 8+ weeks. Using just my right arm will be a new experience and I have to say that I am not looking forward to it. I am also a bit nervous by putting added stress and increased use of the my right shoulder that I will then need it repaired. We are taking precautions that this will not happen, but there is no guarantee.

Because my shoulder was moved to the first priority, but left hip surgeries have been pushed to at least April. I am hoping to speak with Millis in the next couple weeks about reconsidering combining the left scope and femoral osteotomy as well as a possible capsular Y shift for added stability for my left hip. I would rather have the procedures combined because it eliminates a surgery and extra recovery time. I can also feel the difference in pressure and alignment between my right and left legs and know that the scope will not give the relief I need. Not to mention, both Millis and Maiers do not believe that the scope will be enough which frustrates me because then we shouldn't be considering the separate options knowing what we know and have already experienced. I have had my left hip scoped previously and with recurring issues means we are not addressing the underlying condition. Fingers crossed for a combined left hip surgery!!!

I will post updates after surgery, but I know it may be interesting with using only one arm/hand!

To A Happy & Healthy New Year!

2012 has been filled with many challenges and I know 2013 will be sure to bring many more!  

I started 2012 with a femoral revision surgery that had to be post-poned till the spring. I had the right femoral revision in April at Boston Children's Hospital. Dr. Millis did my revision and it was a very successful surgery. The revision involved a trochanteric transfer and has been a huge difference in strength and mobility. I have spent many months doing PT and my strength and function has been the best it has been  in years. Although I still I have anterior pincer impingement and lack posterior coverage, my right is stable and has been consistently improving. I have even been jogging a little in PT (very little, but JOGGING)!

My left shoulder really deteriorated over this past year due to many years of intense physical activity, chronic dislocations and an underlying connective tissue disorder. I have multi-directional instability with primary posterior/inferior instability. I primarily dislocate posteriorly/inferiorly and the dislocations have become more frequent despite shoulder stabilization exercises. Because of this I will be having a reconstruction of my left shoulder which would include a capsular shift, closing the rotator interval and repairing any labral, etc., tears. At this point in time it looks like my left hip surgeries will be pushed back to prioritize the shoulder first. I will be wearing a compression "shirt" to help with scapular stabilization both pre and post-op. It will help in the neuromuscular retraining of my scapulas and shoulders. 

AlignMed s3 Posture Brace

2012 wrapped up my right hip surgeries and will allow the focus to shift to the left in 2013. A left hip scope will performed first to repair the labrum, remove the cam lesion, repair the capsule and evaluate the joint.  I will wear a post-op hip brace to help protect the repairs and control ROM. 2-3 months post-op I will have a Femoral Rotational Osteotomy to correct the retroversion and properly stabilize my hip. The hardware will be removed once the fracture site has healed. 

This has been the first year I have not had classes in 6 years! It was a nice mental break, but I will be pursuing grad courses starting this fall. I have been "soul" searching this past year about what I am "called" to do and I have a love for learning, but I have a passion for patient advocacy. Although I have tossed around the ideas of med and law school, I believe a Master's of Public Health is a way of meshing both law, medicine and ethics. I may even pursue it in combination with a Master's of Arts-Bioethics or Biology. I would love to be able to work for a hospital like Boston Children's in their Government Relations department. 

Every year I set new goals for the year. This past year I have been able to increase my physical strength and overall fitness. I am continuing on my goal to lose weight, but am pleased with increased muscle tone and look forward to slimming down in 2013! This year will bring many surgeries, but I have a great team and will be able to go in as strong as I can and hopefully that will help with the recovery process. This year I also plan on taking my work with Advocare, a nutrition & performance supplement company, and gaining some momentum and income. I want to be successful and have the ability with self-employment to maintain an income while undergoing surgeries and recoveries. Please check out my site: /www.advocare.com/121020640

I know 2013 will bring many challenges and its fair share of ups and downs, but hopefully more ups than downs! I will have a neice come June and my older brother will complete his first overseas deployment this year with the 10th Mtn. My current apartment lease ends in April and I have been looking at new places downtown and in the Carmel/Fishers area of Indy. I plan on continuing my involvement with patient advocacy. I look forward to starting a graduate degree, but I know with surgeries and recoveries that there will be many challenges. I have to come to realize that surgery will be part of my life because I have EDS, but I also need to be able to live my life. 

Wishing everyone a Happy & Healthy New Year!

Personal Mission Statement

I will live each day striving to be closer to God.

I will live each day with courage and a belief in myself and others.

I will build healthy, loving relationships within my family, friends and those around me.

I will live by the values of integrity, freedom of choice and a love for all people. 

I will strive to keep commitments not only to others but also to myself.

I will remember that to truly live, I must climb the mountain today, for tomorrow may be too late.

I will act in a manner that brings out the best in me and those important to me. 

I will be renewed by my own personal victories and triumphs.

I will continue to make choices and live with them.

I will not make excuses and blame others. 

I will, for as long as possible, keep my mind and body healthy and strong.

I will help others the best I can, and will thank those who help me along the way