Refresh

As I mentioned in my previous post, I cancelled my therapy sessions for this week. I just needed a break to refocus my energy. I start back at school on Monday and will start back at therapy next week as well. Hopefully the start of school will help put me in the right frame of mind and keep me focused on my goals. I have a lot of work ahead of me--but I have a wonderful therapist who will help me along the way. Bring on the pain!

My mom and I visited SJU yesterday to find my classes and figure out where to park. I have a handicap decal-which is very helpful. Thankfully 3 of my courses (that are back-to-back) are located in the same building. I also picked up my books and I'm happy that I don't have any major textbooks to carry around. Mondays, Wednesdays, and Fridays are going to be super busy days as I have 4 classes. I also have either therapy or work (depending on the day). Basically, I will be out all day. Tuesdays and Thursdays are easy days. I have therapy in the morning (likely the hardest part of my day), 1 class in the afternoon, and then work (only on Thursday). The next couple of months are going to be intense but I am glad to be able to get another semester under my belt (before my winter/spring of surgeries).

I start back at work on Wednesday (coaching the Level 4's) and I am so excited. I have really missed working with the girls. I will start out working 3 days a week (Wednesday-Friday) and will coach the 4's and pre-team. Hopefully I can work Friday open-gym as well.

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Torn?

PT was horrible today and I have decided to cancel my appointments for this week. I know I am nowhere near where I need to be but I just can't deal with anymore pain right now. Cam probably won't be too happy that I cancelled and have no plans of returning at this point (although I will have to eventually).

I also saw Dr. Shiple. He read my MRI report and did an ultrasound of my MPFL (the ligament I will have reconstructed/replaced). According to Dr. Shiple my MPFL is partially torn and hanging on by a thread. There was one area that looked like it had literally been "blown away." I left Boston with the understanding that it was seriously stretched out but there was never mention of a tear (which I now know I have). I am going to send a quick e-mail to my surgeon to confirm that he saw the tear on the MRI. It's strange because an MPFL tear is common with a patellar dislocation but my kneecap has only been subluxating. Just goes to show how wacky my soft tissue is.

I start classes on Monday and although I am excited to get back into everything--I am annoyed that I am still on crutches and having so much pain. Dr. Shiple prescribed me some pain medications (I haven't decided if I am going to fill the prescription) and he wants me to rent a TENs machine (at home electrical stim for my knee) for added pain relief. I am fortunate to have 3 of my classes back to back in the same building to cut down on walking around campus. Tuesdays and Thursdays I will only have 1 class which gives me a lot of time for studying and homework (as well as PT when I decide to go back). I also start back at work next Wednesday. I will be working 3 days a week to start (Wednesday-Friday) and will coach the Level 4's and pre-team. Unfortunately I will only be able to make it to 1 or 2 competitions in December before I leave for knee surgery and later my scope/RPAO.

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Post-Op 12 weeks

Here is my 12 week post-op x-ray. Dr. Kim said my bones are completely healed and everything looks great! Definitely a huge difference in coverage (from before surgery) and I am very pleased with the results. Now I just have to solve the psoas impingement and I will be able to put a check in the box next to left hip-of course until I have the screws removed next fall!

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Good News/Bad News

I returned home today from Boston. We flew in yesterday and flew home today-a very quick trip. Although I love Boston (it's seriously my favorite place in the whole world) I was glad we were only gone for a day. I miss my puppies when we leave. They are absolutely the most adorable dogs. They make me feel so special and loved when I come home--always so excited.

This trip had both good and bad news. The good news is my left hip looks FANTASTIC. I had an x-ray of my pelvis and my PAO surgeon stopped by to tell me that the bones are completely healed and that I have no weight-bearing limitations whatsoever. He was very pleased with the outcome. Both him and my primary surgeon agree that the groin pain I am experiencing is normal following a PAO and is most likely iliopsoas impingement...again! I have modified therapy, which means more ART (Active Release Therapy) with Cam. Neither of them believe the groin pain is a result of a tear. Phew!

Now for the not so good news. The main reason for my appointment was for my surgeon to evaluate my left knee which has been causing major problems lately. I had an MRI done before the trip and the results were a bit shocking. According to my surgeon my kneecap does not sit in the groove properly--most likely a result of a muscular imbalance and an extremely stretched medial patellofemoral ligament. This causes major mechanical problems that are typically corrected surgically. I was given 2 options- 1) wear my brace and deal with the pain..understanding that the instability would likely increase...not really an option..or 2) have a MPFL reconstruction and lateral release surgery. My surgeon recommended the surgery to correct the problem, believing it was my best, really only, option at regaining stability in my knee. We plan to have the surgery done in December right after I finish my finals. This means that my RPAO/scope will be pushed back to March. If for some reason the surgery is not successful I would then undergo an osteotomy to correct the alignment of the tibial tubercle. An osteotomy involves cutting the bone and is a much more invasive procedure-as the PAO is. I will explain the surgery (MPFL reconstruction) at a later time.

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Boston

I am heading to Boston tomorrow for my post-op appointment/knee evaluation on Thursday. My hip and knee are not doing well and I am a little concerned for what they might say. I have been having severe groin pain (same as before and after my scope) and knee pain.

The dysplasia pain I had before surgery is gone and I am thrilled about that. I definitely know that doing the PAO was the right decision and will absolutely have it done on my right hip as well. I just wonder if my LPAO should have been combined with a scope to check for a possible tear. If my labrum is torn again (most likely from my fall in March) I will probably need another scope to fix it as I don't respond well to conservative treatments.

***Recap: In March I had my first hip surgery to correct a severely torn labrum and FAI--this was an arthroscopic procedure. At about 3 weeks post-op I had a fall followed by excruciating groin pain. The biggest concern for both my surgeon and myself was another labral tear or damage to the capsule. It is likely the capsule was torn but because my surgeon used anchors to repair the labrum the MRI was inconclusive. He wasn't convinced it was torn, yet wasn't ruling out a possible tear either. It was just too soon to tell. We decided to go ahead with the osteotomy, understanding I would need it done no matter what, yet we knew that it was possible that my left hip may not be done after a PAO. We are all hoping and praying that the pain I am experiencing now is not an indicator of a tear and that I don't need another surgery on my left.

As for my knee- it feels more unstable and subluxes more frequently. I saw Dr. Shiple today and we did another set of injections although they really don't seem to be working. Both Cam and Dr. Shiple feel that when my quad returns to normal function and strength my knee will stabilize--how much and will it be enough to stop the subluxations is to be determined. However, Dr. Shiple is worried that my MPFL ligament is overly stretched or partially torn (a result of my frequent partial dislocations). For me, given EDS, a very stretched ligament is almost, if not just as bad as a torn one. I have a script for an MRI which I am hoping to get done tomorrow. It typically takes a week for me to schedule an appointment but I will see what I can do. My surgeon would like the scan for my visit with him and I fly out to Boston tomorrow night.

Although I LOVE LOVE LOVE Boston I am not looking forward to this visit. That is most likely because I don't expect good news. Hopefully I am wrong and I can post an update after my appointment saying that everything is going according to plan. Either way there will be a post about the appointment later this week!

Praying for a good outcome and a treatment plan!

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Maybe Next Summer : (

My only vacation for the summer ended today-although it wasn't supposed to. I am supposed to be down the shore until Saturday but it didn't work out. I guess I just wasn't ready.

Every year my family goes to the Jersey Shore with several other families. We rent the same house on the beach and it's always my favorite part of summer. I have been looking forward to this vacation for months. I was finally going to get out of my house and spend time with friends--do something fun for a change. Unfortunately my hip and knee decided they didn't want to be there.

Last week my groin pain came back and has been getting worse. It's the first time since I woke up from surgery that I have had (left) hip pain. Of course my knee pain decided to come back at full force as well. During the three days I spent at the shore, I tried to keep up with my friends and relax but I just couldn't do it. Nothing about the trip was relaxing. I was in pain the entire time. I couldn't keep up with everyone. Just getting on the beach was exhausting and painful. Once on the beach I would sit and watch my friends spend hours in the ocean (my favorite part of the beach). I was told that I am high maintenance and endured comments about how much of a spaz I am and how I always have something wrong. I tried to laugh it off but I am way beyond that. I tried to explain that it's not my fault that I have had so many surgeries--that I can't always control it. Had we known I was born with EDS I probably never would have done gymnastics and never would have had all those surgeries. My friends wouldn't consider me a "cripple" and I wouldn't be considered high maintenance. This week, I felt like I couldn't even say that something was hurting because I'd get another comment thrown at me. It's so frustrating because they don't understand what I have been through, how much pain I have been in, and how hard it has been to accept and live with everything that has happened to me.

I have tried to be positive throughout this experience-to learn from it. I still think that I have been handling everything pretty well..all things considered. I know I will come out of this a better, stronger person--I just need to remind myself that I am allowed to breakdown sometimes! I am allowed to feel sad about the things I am missing out on and the things that I will never be able to do again--just as long as I don't live everyday in self pity. I guess I just wish that everyone else could understand--but I can't hold anything against them. Unless you are dealing with this personally-it's hard to fully grasp the impact this all has on your life. I am very thankful that I have a supportive family. I am also very thankful for my Hip Chicks. It's comforting to know that there are others who are going through this as well.

I hope that by next summer my hip nightmares are over and I am able to enjoy a full week down the shore with my friends and family.

"You can't always decide what happens to you, but you can decide how you react."

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Holter Test

Today was a very busy day! My mom and I woke up at 5:30am to get ready to head into Philly. I had my meeting with the Disabilities Director at Saint Joseph's University. Everything went really well and I was truly amazed at how supportive and accommodating everyone at SJU is. I was able to pick up my student ID and parking permit for the semester-including a handicap sticker. My schedule is almost finished. Because I am a transfer student and I'm scheduling months after everyone else, a lot of the courses that I need to take are already filled. An advisor has been working really hard to get me into those closed classes and to make my schedule work around physical therapy and work. We had originally planned to schedule classes three times a week (to cut down on commuting and walking) but it looks like that isn't going to work. Now our goal is to make sure the buildings are all located close to one another. I am really looking forward to starting back up again!

After our visit to SJU, I had to have a holter put on to check for any irregularities or arrhythmias. I have to wear it for 24 hours and I can't shower! I have PT tomorrow which means Cam will probably make fun of me--but at least I know he cares!

A holter test is a continuous tape recording of a patient's EKG. It helps physicians understand symptoms such as dizziness, palpitations, or black outs-while the patient continues on with their normal daily activities.

Tuesday I had my 4th treatment of superficial prolotherapy for my knee. The 3rd treatment was very helpful and reduced my pain by about 50%. This time around I haven't noticed a difference. It's getting frustrating! Maybe it will start to work in the next couple of days. I don't have another treatment planned until August 17th as both Dr. Shiple and I are on vacation next week!

Today I have been experiencing sharp, catching groin pain. I am hoping it is literally my groin and not the cartilage (labrum)! My hip has also been sore lately but it's most likely because I have been working hard in PT and weight-bearing more. I was officially cleared by Cam to walk. Of course given the condition of my right hip and EDS I will most likely have some type of assistance with me just in case. I will still use a wheelchair at the beach to take pressure off both hips and my other joints as well.

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