Thursday, June 30, 2011

Functional or Structural

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I talked to Cam today about my back issues. We discussed the curve in my spine and whether or not this warrants any further review. He said at this time I have "functional scoliosis." Essentially the curve in my spine is not necessarily related to a spine deformity, but rather is the result of other mechanical and underlying abnormalities elsewhere. This can be caused by muscle spasms, leg length discrepancies, inflammatory conditions, etc. Typically functional scoliosis is temporary and requires no treatment because the structure of the spine is normal. However, that's not necessarily the case for me. It is unknown at this time if I actually have structural scoliosis. We are simply calling it functional because I have never been diagnosed with formal/structural scoliosis before. Once I have returned to a "functioning" state, (when my gait returns to normal, when I am no longer crippled over with back pain and spasms, and when the functional scoliosis would no longer be a problem), I will have an x-ray of my spine to determine if I do in fact have structural scoliosis and to what degree.

**Scoliosis has been associated with Ehlers Danlos Syndrome

Tuesday, June 28, 2011

Rotated L5 Vertebrae

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I saw Dr. Shiple for a much needed appointment as I have been experiencing beyond horrible back pain--no doubt because of my incompetent SI joints and their inability to stay in place. I had PT with Cam before the appointment (in the same location) and really struggled to do most of my exercises--even the easier ones.

By the time I saw Dr. Shiple my right leg was about 2 inches shorter than my left and you could see my right SI joint while looking at my back. First order of business was to put it back in place (although it popped out a couple of times during other manipulations). While he was putting my SI back in place, he noticed that my L5 vertebrae was rotated and was likely contributing to the insane instability. He attempted to reorient L5 but back pain and restrictions from other joints limited his ability to perform most of the techniques. I also have a severe muscle spasm above both SI joints that he was unable to relieve with manipulative movements. I will be trying Hivamat twice a week to help with my back spasms and pain. Hivamat stands for Histological Variable Manual Technique and is similar to electrical stimulation but with the added massage. This allows the electrical stimulation to penetrate into deeper tissue while manually working through spasms.

Visual of Vertebrae numbered
L5 (bottom of yellow region)
Shows close positioning of L5 vertebrae and SI joint
We decided that I needed to stop wearing the walking boot on my ankle because it throws my entire body out of alignment and is the reason for setbacks in my hip/knee therapy. Cam and Dr. Shiple agreed on a new brace, so I ordered a level IV (maximum support) ankle stabilizer that will hopefully keep the ankle from playing any tricks on me. I should have the brace as early as Thursday of this week!

Bauerfeind CaligaLoc Ankle Brace
Level IV (maxiumum support)
I have PT tomorrow with Cam. Hopefully the session is a little more beneficial than today, although I don't expect it to be because nothing has changed. Cam will be doing stim on my back from now on--I can't say I'm the biggest fan of stim, but at this point I'll take anything if it offers relief.

Thursday, June 23, 2011

Tuesday, June 21, 2011

Rest In Peace

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Last week was a very sad time for my family as Father Charlie Murphy passed away. Father Charlie was a faithful priest, ministering in various communities. He went above and beyond the call of duty and participated in multiple charities. He was a counselor at The Boston School for the Deaf and was Director of the Deaf Apostolate as well. Charlie was a wonderfully kind person with contagious enthusiasm and energy. His personality could light up the room. He was a loving family member and truly brought out the best in people. Words cannot express the love he had for God, his family and friends, and life!

Times like this make you truly appreciate the time you spend with family. It's sad that it takes a tragedy such as death to bring families together. Family is everything to me and I cherish every moment I get to spend with them. People say you don't know what you have until it's gone. Truth is, you knew what you had, you just never thought you'd lose it. I am very thankful that I got to see Father Charlie before he was welcomed home by God.

****

Father Charlie, the Boston Bruins won the Stanley Cup! That one was for you. I hope you are celebrating with Poppy Ed in heaven! Rest In Peace. You're in a better place now! You will forever be loved and greatly missed.

Father Charlie
My Christening- 1990

"Tears are God's gift to us. Our holy water. They heal us as they flow."

If you are interested here is the Obituary


Sunday, June 19, 2011

Miserable Malalignment Syndrome

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Last week was very stressful and exhausting (mentally and physically). I had another appointment with my surgeon on Thursday and a MRI of my right ankle on Wednesday. We discussed my knees, RPAO post-op status, back, and a little about my ankle.

Ankle/MRI-
My surgeon briefly looked over my ankle MRI (my ankle surgeon did the full evaluation and later confirmed) and said that it did not look good at all. The ATFL ligament (a lateral/outside ligament that supports your ankle from rolling out) is "shot." There was evidence of tears that tried to heal but didn't heal correctly. At some point the ligament was ruptured and it's likely I re-tore it many times! Regardless, the ligament is beyond useless (not that many of my ligaments are really useful) and needs to be removed and replaced with a cadaver tendon. My ankle surgeon will perform the Chrisman Snook procedure--which is an open procedure that involves screws and a cadaver tendon. I will spend approximately 10 weeks in a cast.

*My RPAO screws will be removed during my ankle surgery!

Knees-
My left knee looks great! I finally have functioning ROM/flexion and no longer wear the post-op brace. My hip surgeon was VERY happy to finally see me without the brace after 8 months. I still need to build up strength in my quad and continue controlling my RSD but otherwise the left leg is doing well. My right side is a little more complicated. The right knee is still very loose but hanging on. Unfortunately I have Miserable Malalignment Syndrome in my right leg. In simple terms, my right leg is "crooked." The bones in my leg don't form the proper angles. It can stem from the hip joint, knee, or ankle! This malalignment causes a chain reaction to the upper body (likely a contributing factor to my back pain and SI joint instability). Because of MMS, if my right knee were to dislocate (and it warranted surgery) I would need both the MPFL reconstruction and TTT Osteotomy (Tibial Tubercle Transfer). A TTT Osteotomy is a realignment procedure with an extensive recovery process. It involves realigning the Tibial Tubercle (just below the patella/kneecap) to create the proper Q-Angle (see picture below for a visual of the Q-Angle and surgical fix). Fingers crossed I can get away without needing my right knee reconstructed! I have a renewed script for more PT with Cam to strengthen the muscles and relearn how to walk properly--using the correct muscles..in the right order!

Miserable Malalignment Syndrome (lower body can send a chain reaction of alignment abnormalities to upper body)

Surgical fix (TTT Osteotomy)
Q-Angle Diagram
  


Hip-
I saw my primary surgeon for my post-RPAO appointment because my PAO surgeon wasn't available. I had an x-ray which showed that the bones are 99% healed! Great news! I will continue therapy with Cam to regain function in the hip joint! Some of my exercises cause groin pain but so far nothing like my left hip! I hope I continue to make forward progress with my hips--I don't need any set backs!

Back-
We spoke briefly about my SI joint instability and pain. EDS is obviously the main reason my SI joints don't stay in place but it's possible Miserable Malalignment Syndrom plays a role as well. I was told I need to wear an SI belt and hopefully that will help a bit. He said it may be beneficial to see one of the back specialists at Children's during my next trip in August.

It was also great to be in the best city in the world when the Boston Bruins WON the STANLEY CUP! GO BRUINS! (I still believe that wearing Patrice Bergeron's shirt on the day of Game 7 had something to do with it...I mean he did score the winning goal)

Yesterday I went to the Kenny Chesney concert! It was AMAZING! I can't wait for next years concert..I seriously recommend seeing him perform. He puts on a great show!

I start therapy tomorrow with Cam for my shoulder! Hopefully the evaluation goes well...

Tuesday, June 14, 2011

Ankle Surgery

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Today was not a very good day...not until the Bruins won to force a game 7 in the Stanley Cup Finals! That just about made up for the news I received at my appointment!

I saw my surgeon today for a follow up on my shoulder and an evaluation of my ankle instability. I mentioned in a previous post that I have been having a really hard time with my right ankle lately. It rolls all over the place and has been really painful. I have a history of sprained/fractured ankles but it has become a much bigger problem. He did a test to check the instability and immediately was not happy. Apparently my right ankle is horribly unstable. When he was pulling (gently) I felt as if my ankle wasn't attached to my leg. He agreed and followed up by telling me it was not going to last much longer. I asked if I could wait until next summer to have the surgery but it's not realistic. I will have the surgery in December during winter break. I won't be missing anymore school and will start the spring semester off in a cast. It's an extensive procedure and requires a lot of immobilization and rehab. I will spend the entire semester (and more) in therapy working with Cam! I was really looking forward to enjoying the rest of the year with no surgeries but with EDS plans change! I was given a "package" of supplies to support me until the surgery. I am currently in a walking boot for 4 weeks as I am coming off of a pretty bad sprain. I also have an aircast stirrup splint and lace up stabilizing brace! I was told to use any of the 3 during the next 6 months! I have an MRI on Wednesday to make sure I didn't rupture any ligaments and to check for other damage that an x-ray doesn't pick up on. My left ankle is very loose as well but it has not been problematic and won't be addressed until I start having problems.

On a positive note, my surgeon said my shoulder looks great! I am officially cleared from the pillow sling. I have a little more ROM than most people at this point in recovery (no surprise there) but overall he is happy with the tightness. Strangely, I am crooked. When standing straight and upright, my left shoulder (operative side) looks "normal" and my right side hangs down low. I will post a picture later to show the difference. It's crazy to think that at one point both of my shoulders were so loose that they drooped down so low. My right shoulder will be fixed next summer. Hopefully that will even them out.

GO BRUINS! Game 7 on Wednesday @ 8pm! Bring home the CUP boys!

Wednesday, June 8, 2011

Cleared

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I was officially cleared to walk after over 15 months of some type of assistance (mainly my wheelchair). I still have to work on the proper techniques with Cam..but this is definitely a STEP in the right direction. It is progress that I definitely needed. This will help boost my motivation to keep up with my therapy and not give up when I get frustrated..which lately has been pretty often!

I have definitely made progress in therapy, although some exercises are very difficult because I have major SI joint instability (lower back). I was told I need an SI belt for now to help stabilize my pelvic region! Hopefully that provides some relief and stability. My right hip feels pretty good! I have groin pain with flexion movements...my psoas are irritated again..but this is nothing new! Cam said I have been doing well (hip wise) and I have made more positive/forward progress than he was expecting at this point in my recovery. Hopefully things continue to move forward!

I will be heading to Cooperstown this weekend to spend time with my family and watch my cousin in his baseball tournament. Family is very important to me and I look forward to seeing everyone! From Cooperstown my mom and I will be traveling to Boston for my post-op appointments next week.

I will see my shoulder surgeon for my shoulders and ankles and my hip/knee surgeon for my knees and hip. If all goes according to plan I should be allowed to stop wearing the pillow sling--fingers crossed--and expect to start formal PT for my shoulder when I return home! It is possible that my surgeon will cast my right ankle. I have been really struggling with instability lately. I have "sprained" my ankle several times in the past couple of weeks...each twist doing more damage. An awkward or forceful twist/roll of my ankle could cause my right kneecap to dislocate. My knee will be re-evaluated next week, but as of my last visit it was dangerously loose. We are doing everything we can to prevent any dislocations/subluxations but with EDS it's hard to control!

I will also be meeting up with one of my Hip Chick friends, Ashley, to go shopping on Newbury Street and spend time together enjoying Boston (my FAVORITE place)!


I will post an update after my appointments next week! I hope everyone has a great week with lovely weather...and of course as pain-free as possible! 

Go BRUINS!

Saturday, June 4, 2011

Thursday, June 2, 2011

Wednesday, June 1, 2011

1 year post LPAO

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Today is the 1 year anniversary of my LPAO. I have been experiencing some groin pain with some of my PT exercises but it's nothing to worry about. My hip gets sore with the weather but I was told that I could always have that problem. I am still lacking in quad strength so walking or standing for a long time gets tiring but this is something I can live with. Otherwise, my left hip feels great and I definitely made the right decision to have this surgery. Unfortunately the rest of my body does not feel so hot!

My shoulder still hurts. This is definitely the longest I have gone with post operative pain. Sleeping is uncomfortable, which just adds to my sleeping problems. I am so tired of only having one functional arm..and my non operative shoulder isn't exactly functional either. My right shoulder still subluxates a lot. I will most likely be having that fixed next summer. I am NOT looking forward to that surgery--I don't know who would--shoulder surgery is very painful. If it were up to me, I'd have another PAO. I seem shoulder surgeon in June to hopefully get out of the pillow sling and start formal PT. I will also see him for my ankles.

I have "sprained" my right ankle twice in the last 2 weeks. Apparently getting out of bed is a strenuous activity for my ankle. My ankles are chronically sprained after continually fracturing and spraining them as a gymnast. I used to fracture/sprain my ankle landing in the foam pit...a landing area to help PREVENT injuries. I have had poor stability for years. Typically rolling my ankle doesn't hurt because the ligaments are so loose/stretched. However, my ankle has been bothering me since I rolled it a couple of days ago. It has also been swollen and slightly bruised--unusual seeing as I don't typically swell or bruise with a sprained or fractured ankle. I will talk to my ankle surgeon in June about the chronic instability.

My right hip has been sore lately. This is likely due to the increased activity--physical therapy! My psoas are angry again. Iliopsoas impingement is NOT an easy problem to fix (at least not with me). I don't respond well to manual therapy and that's the best way to handle the psoas. Hopefully that gets better with time and more strength.

My right knee has stayed in place, which I am very thankful of. Cam tapes my knee (and ankle) after every PT session. It is still very loose and I need to be careful. It will be reevaluated by my knee surgeon in June. Hopefully the instability has not gotten worse since May. My left knee has been doing a lot better. I have officially been cleared of the post-op brace. It only took me 8 months. I still need to build up more strength in my quad but I have reached a functional level of flexion/ROM. We will not push the flexion any further as it is expected that eventually I will regain full range of motion.

My back has been HORRIBLE! My SI joints don't stay in place. Almost immediately after it is put back in, it pops back out. I was told by Cam and Dr. Shiple that I need to wear an SI belt. Hopefully that helps stabilize my pelvic area for now. I can barely sit, stand, and sleep comfortably because of my back pain. The hot tub helps while I am in it but because my SI joints keep subluxating I am continuously throwing my back out of alignment. I need a new back.

My neurocardiogenic syncope has been bad lately. It's possible the excessive heat we have been experiencing has been the problem. Dehydration is a pretty standard trigger for people with syncope and when it's hot and humid (bad enough to warrant a weather statement) it doesn't matter how much you drink, you're still likely to become a little dehydrated.

I have a lot of compounding issues right now. I don't feel like I am making any progress. Once I fix one joint, another joint falls out of place. I am stuck inside what feels like a never ending cycle of problems. Hopefully I can catch a break soon!

My good friend Marcie just had her 2nd PAO yesterday! Please take a moment to say a prayer that her recovery goes smoothly!