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

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! 

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!

5 Weeks Post-Op

This past Friday marked 5 weeks post-op from my trochanteric transfer osteotomy and femoral osteotomy hardware removal. I saw my local OS for new x-rays and incision check. Fortunately, my incision looks great, but the x-rays did not look as promising.

I had been anxiously awaiting this appointment to see how my bone healing was progressing. I have a history of poor wound healing, but with the FO I had a delayed union causing the bone to collapse and shifting the greater trochanter 2.5cm higher than my left hip. I was given a bone stimulator to help complete the femoral healing and it was successful. I had to have a last-minute surgery post-poned, but it was successful and then on Good Friday I had the revision to re-position the greater trochanter. I believed that using the bone stimulator from the start of this recovery would be very beneficial in the healing progress and lessen the chance for complications. This was already the surgery to fix a complication of a surgery done to fix a botched surgery. I was almost positive that my bone was healed by how I felt and that I had been using the bone stimulator religiously, but it did not seem to help as much as it was suppose to. When speaking with Maiers he said it may be healing, but actually looked as if the bone that was re-positioned is beginning to fragment and that the major pin in place is bowing. I felt like I was punted in the gut. I am waiting to hear back from Millis, but it was not the positive news I was waiting to hear! I still feel in shock and am not sure what is going to happen next. We have tried every precaution, equipment, etc., yet I am still in the same position with even yet more complications and a right leg that is not healed. This was "suppose" to be the last right hip surgery needed, but if the trochanter fractures or breaks apart I will need another surgery being that it's attached to muscle. etc. My right leg will probably always be weaker, but the more that is needed to be done to correct issues the farther the reality of running, Commissioning as a U.S. Army Officer, etc., move farther out of view. To top it off, the longer I remain on crutches the more unstable my left shoulder becomes. There is nothing that can be done about it until I am off crutches, but with delayed healing that also delays being able to ditch the crutches. With the added stress my Raynaud's has been flaring, but with an added twist. I typically get symptoms with cold, but was unaware that stress would affect it as well. With the pressure my shoulder is under my hand will turn bluish in color, which is new for me and alarming at first, because I thought it had to deal with my shoulder instability, which in a way it does, but is just a new turn on my Raynaud's. So yet again I am waiting on word from Millis!

I am trying to stay positive and maintain my precautions till I hear word otherwise, but it feels like my life is a game of chutes and ladders and that I have been hitting a lot of chutes lately! I am ready for the pool to open so that I can enjoy some exercise without stressing my body. I am also looking into therapy yoga to help with my mind, body, spirit, etc. I am willing to try whatever it takes to get my life back or a new perspective on the one I have. I feel that I may be naive to think that I can be the same person I was 5 years ago. There are things I need help changing and adjusting to and a new outlet physically for me to enjoy. I do know that I want to stop having surgeries though!

Right Hip Surgery #5 (9 Surgeries Total)!!!

I am a little over a week post-op from my right hip surgery. I had a right trochanteric osteotomy and hardware removal on Friday, 6 April at Children's Hospital of Boston with Dr. Millis. This is my 3rd hip surgery with him and hopefully I will only need one more to repair my left hip. I continue to be amazed at the level I care I receive at Children's. Every single person you meet is incredible. One of my pre-op nurses has worked with Millis for 40 years. The funnier part is that she says he was the same 40 years ago, but is just grumpier now LOL My day nurse, Josh, was from Sierra Leone and came to the U.S. with nothing, worked 3 jobs, went to school and was just amazing to talk to. We even talked politics! My night nurse, Matt, was also so nice and caring. I was also lucky enough this time to get a private room. It was my first time in a private room, but I also enjoy roommates too because we are typically similar ages and are able to talk with each other and have some other company.

Pre-Op/OR: I had to be at Children's by 9am for a 10:30am start, but with Millis I waited an additional 2.5hrs till surgery started. An IV was started pre-op to help with hydration since my veins are typically very difficult to get lines in. I had to wear TED hose on my non-op leg, but I was able to wear my own hot pink leopard slippers! I was able to chat with some very kind nurses including Mimsy, who I mentioned before has worked with Millis for 40 years! At the last minute Millis recommended NOT having an epidural because he wanted me up sooner with this surgery and an epidural would delay that. It was also part of the reason I was unable to get ketamine either. It would delay PT and I would have needed to have stayed in the ICU, so we decided against that as well. It did make me very nervous with pain control not having those and just doing general with a pain pump. I was given a bit to relax me prior to the OR, but it didn't work as well as I'd hoped. The staff could tell I was very nervous and Millis even held my hand as I was put under. I have never had a doc do that before, but it helped ease the nerves. The surgery was suppose to last 2.5hrs, but ended up lasting about 4 hours. I stayed in the PACU for about 3 hours because I was quite cold and having a couple issues. I made it up to my room at about 7pm.






In-Patient Stay: I was in-patient at Children's from Friday, surgery day, till Tuesday morning when I was discharged super early to make our 7am flight. Friday and Saturday I was not allowed out of bed and just to rest. I had thigh-high TED hose to help with swelling and prevent blood clots. They were not very comfortable because my right leg was so swollen so I was able to have them changed to just knee-high. I also had to wear compression pumps on my calves to also help avoid blood clots. I had a catheter in until Sunday, when I had PT for my first time. 15 minutes nearly wore me out, but I walked the bar to the end and back. Monday, I had 2 PT sessions and was also able to take a shower. It felt amazing and I was able to get into some of my own comfy clothes. Unfortunately, Monday I also had to have 2 enemas because the Miralax and Milk of Magnesia was not effective. I tried staying hydrated as well as eating high fiber foods and yogurt, but no luck :( I was also able to sit up in a chair and watch some movies. I was also able to FaceTime for the first time with my big hip sis, Sarah Zimman, and good friend, J.R. White. It was awesome!

PT Restrictions: I have more restrictions this surgery then I have ever had. I am not able to bend past 90 degrees, but can also not lay flat at 180 degrees. So, I sit or lay in a slightly bent position. I am also not able to "roll" by leg in or out, so it stays straight. I can not cross my right over my left leg, but can do the opposites. I can not abduct or adduct my leg, which means I can not lift my leg out to the side or bring it past my left leg like a pendulum. These restrictions are for at least 4 weeks till my first post-op appointment. I am also 1/6th weight-bearing till then as well. I use a bone-stimulator every day as to help promote bone growth and avoid another delayed union. After Millis sees my 4 week post-op x-rays he will determine what I can do from there and what the PT plan will be.




My Mom and I flew home early Tuesday morning, but it was not the greatest of experiences. I was completed violated by TSA with a "pat-down." The wheelchairs were also very small, almost pediatric size. They couldn't find a wheelchair initially and I had to very slowly crutch to security and the gate. When I got onto to the plane I could not even fit in the seat because my hip was so swollen. I am not that big of a person and at that point I broke down. I was in tears after TSA, but the flight situation made me feel horrible. I had some great flight attendants who moved me to the back row to give me two seats with the arm rest moved up and to sit with my mom. Typically those seats are for the flight attendants, but they gave them up to me which was so kind. I wish I would have known and would have booked a non-stop flight, preferably in first class because those flights are not packed at all and usually get bumped to first class for comfort. Lesson learned.

BOsToN bOunD

I leave for Boston in less than 12 hours and I have been finishing up last minute details and chores to prepare for this surgery. I have tried to get everything ready so that there won't be anything needed to be done while I am gone, but having my dad and little brother watch the apartment and my dog means that it will probably be un-done by the time I get home. LOL I have also been playing nurse for the last week between my dad being sick with a respiratory infection and Chloe having a cyst removed on her shoulder, poor Fuzz. I have been doing my typical chores and then some caring for my family. Gladly, both are on the mend. Chloe is like a small child though and doesn't understand that she can't rub and scratch at her stitches, so she ended up adding to the wound. But, she is healing and will get her stitches out when I get home from Boston.

I will be leaving early tomorrow morning with a lay-over in Chicago. I have pre-admitting and pre-op appointments in the afternoon and then, some good food at either the Cheesecake Factory or PF Changs! I will find out my surgery time tomorrow afternoon and I am hoping that I am in the morning. I will be at Children's until the morning of the 10th and then we fly back to Indy. My mom is going with me again for this trip. I think she just goes for the shopping ;-)

*Shoulder Update: I had an appointment with Dr. Misamore at Methodist Sports Medicine a couple of weeks ago. He does agree that my left shoulder is unstable, but unfortunately until my hip surgeries are complete and I am off crutches there is nothing we can do at the moment. He thought it would have been a lot worse with EDS, but with being so active for so long I have had good muscle tone which has only helped. The prolonged use of crutches has really taken its toll. I asked about PRP or Prolotherapy and he did not believe either were a viable option. He has not found any research that supports there benefits. I also asked about a cortisone injection for the inflammation and being too close to surgery that was also out. It won't be an option post-op either until the bone is healed because anti-inflammatories can inhibit bone growth. We also spoke about PT and that is post-poned until I am off crutches or we risk over taxing the muscles which is what is holding my shoulder together and we do not want to create more of a problem. He doesn't support surgery with EDS either, because research shows that with EDS time will only un-do the surgery and wouldn't be worth it. I was glad to hear that he didn't think my shoulder needed surgery! After I am off crutches my PT will add exercises to my therapy regimen to help improve strength. I look forward to getting back into shape because it will only help this problem and it's long overdue!

I am hoping to see my big hip sis, Sarah Zimman, this trip, but she has had a lot on her plate with the death of a close friend and her apartment building catching fire. Fortunately no one was hurt in the fire, but the damage was severe. Please keep her and her family in your prayers.

I will post more updates once I am home from Boston. Hopefully, this will be the last surgery I need on my right hip! Wish me luck!!!