Tuesday, August 18, 2015

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. 

Monday, August 17, 2015

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



         

Monday, October 28, 2013

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.


Monday, January 14, 2013

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!

Monday, December 31, 2012

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

Monday, December 24, 2012

Merry Christmas to All!!!

I am pleased to announce that I will be an aunt to a baby girl, Eloise LaVonne, June 2013!!!



My older brother, Michael, and his wife, Danelle, are expecting their first child June 3rd, 2013. This will be the first great-grandchild, grandchild, etc., for both her sides and our sides of the family, so needless to say this will be a very spoiled baby! My older brother is an active-duty Army Chaplain at Ft. Drum (Upstate NY) with the 10th Mountain Division (1-87th). Danelle is a photgrapher. They will be amazing, loving parents! I am so excited for them and for the family to welcome a baby girl! Congratulations Michael & Danelle! Merry Christmas! 

Our family had Christmas early. We did the exchanging of gifts, dinner, treats, etc., this past weekend. Michael and Danelle drove out so they would be able to see her family and ours. They spent the weekend with us and headed back up to Chicago to spend Christmas with her family prior to heading back to NY early on the 26th. Michael will be deploying soon so his schedule is tightly packed, but they wanted to see everyone prior to him leaving. I ate way too much food, too many cookies, but had a good time with my family. I have always enjoyed being able to spend time with family, laugh, share pictures and watch a movie (typically with commentary from my brothers). 

Although this week we celebrate Christmas, I have an MRI-arthrogram for my left shoulder, PT sessions and a follow-up with my ortho surgeon. My left shoulder has been increasingly more unstable and painful despite months of PT. My shoulder is stronger than what it was, but has not improved in regards to pain/stability and has added nerve issues to the mix. I have not had an MRI on my shoulder yet and my doc thinks I have more damage than originally thought. Although I have instability, he believes that I have labral tears and possibly other issues that will need to be surgically addressed. My shoulder is at a point where it just can not compensate anymore. I will also be getting an injection of cortisone/analgesics to help with pain/inflammation in my shoulder, since we will already be doing an arthrogram. I will find out my results on Friday when I see my ortho and we will discuss more details at that time. 

I will be having my left hip scoped locally by Maiers to address numerous issues. Although neither Millis or Maiers are confident that the scope will offer enough relief, I have numerous issues that need to be addressed that not just one surgery will be able to address. I have dysplasia, femoral retroversion, anterior & posterior labral tears, residual cam lesion, bursitis and capsular damage. We are planning on the scope first, then the femoral osteotomy. Typically, the scope is outpatient, but I will be staying overnight due to known issues and additional repairs. I will also be wearing a post-op brace to help with stability because I am overly flexible. 


We are hoping the added precautions will help with the recovery and maintain the repairs till the additional underlying issues can be addressed by Millis during an open surgery later this spring. It looks like 2013 will start out with a couple surgeries! 

I hope that everyone is able to spend this Christmas with the ones they love and care about and a Merry Christmas to All and to All a Good Night! 

Thursday, December 13, 2012

The Journey Continues...

 Another year is coming to a close, while at the same time I am gearing up for what I know will be a challenging 2013. Here is an update of my last few months and some future plans in the works...


 I am 8 months post-op from my right trochanteric transfer/revision and hardware removal. I saw Millis at the end of October for a 6 month post-op as well as diagnostics of my left hip. My right hip has been better than it has been years and Millis was so greatly impressed. He told me that he did not think the right coming back to this level was even possible. I do have residual pincer impingement, excess bone growth on the iliac crest and hardware remains in the femur. That will be dealt with during the left femoral osteotomy at this point or on its own at a later date.


 As for the left, it had been put off until the right was stable enough. Three years later, we are now investigating the left. I have had a scope on the left, but nearly three years ago. The left hip has a labral tear, cam impingement, bursitis, mild dysplasia and femoral retroversion. As of right now, the scope to address the labral tear, cam lesion and bursitis is scheduled for Jan. 22nd, 2013. The idea is that because the left femoral torsion and dysplasia are not as bad as the right that the scope may be enough. However, both Millis and Maiers were not convinced that the scope would be enough and the likelihood that it will require a FO is highly probable. Although I do not like the idea of another 2-3 hip surgeries, I know that Millis would not steer me wrong. I can also see that even though the chance is small that a scope will be enough, that Millis would not want to put me through the pain of an FO if not at all necessary, especially because of all the prior surgeries. Whatever Yoda wants, I will do :)


 During the most recent trip to Boston, my best friend, Jessica Nelson, was able to be my travel buddy. We had such a blast! She was able to experience a little of what I deal with and even met the doc himself. We toured the city, shopped, spent Halloween in Salem, visited a hip sister of mine and even experienced Hurricane Sandy! We had such blast!!!


 I began working for a company, Advocare, that is a direct-sales, health company. Advocare is a world-class nutrition company specializing in health and wellness, weight management, vibrant energy and sports performance. I was approached by an Army doc from my former unit because he thought I would benefit from a particular product already knowing my medical history. I started using the energy drink, Spark, and couldn't believe how much better I felt. I continued to use the products and saw improvement in my PT. My dad started using products and has lost 26lbs in a little over a month! I felt so much better using the products, so I took the step to be a part of the company. I have a great team of people teaching me the business aspect of the company and encouraging me every step of the way!

 http://www.advocare.com/121020640

 Advocare will allow me to be able to work despite surgeries and constant appointments, etc. It will also allow for financial growth and stability that a traditional job would not be able to offer.


 Other Updates:

*Shoulder-Although my shoulder strength has increased, I have not gotten a lot of relief in regards to inflammation and pain. I am also developing nerve symptoms in a couple of my fingers.

*Hips-Left scope is scheduled and plans for further surgeries are in the works.

*Jaw- I have had TMJ issues for many years, but has been incredibly painful since having a root canal this past July. I actually have a displaced disc on my left side that helps cushion the joint. When opening my mouth, my jaw shifts down and out to the side prior to opening fully. My jaw will move in and out of place and has locked while closed. Traditional, non-surgical options are no longer working and surgical options are being considered for the upcoming year.

*RSD/CRPS- My right leg has been worsening. I had a spinal injection for low back issues, but resulted in a spinal headache. A sympathetic block typically brings relief, but was not successful this last go around. We will now be looking into other treatment options, probably in conjunction with a hip surgery.

*EDS- I am scheduled for the EDS Clinic at Cincinnati Children's Hospital end of January, but am reconsidering to just combine an EDS appointment with hip surgery at Boston Children's. I would like to have a place a little closer to home in regards to continued, specialized care for the EDS. It was also depend on hip surgery, recovery and what complications may arise.

I am looking at graduate programs focused around health law, patient advocacy, etc., for the fall of next year. I am also hoping to find a new apartment when my current lease is finished. Another crazy year is about to begin!