Monday, February 28, 2011

Pre-op, Post-op. Post-op, Pre-op.

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I spoke with my PAO surgeon's surgical coordinator briefly. Because he has been away for the past several weeks she has been unable to make any progress with scheduling my upcoming appointments. Hopefully everything is finalized this week. She was able to fax over the blood donation form to the American Red Cross and I will call to schedule my first donation tomorrow.

Unofficially my pre-op appointment for my RPAO will be on March 17th (same day as my blood donation at Children's). She is not sure if I need a MRI and is waiting to hear back from my surgeon on whether or not that is necessary. If I do need a MRI, it will most likely be at the Waltham location and we may need to leave earlier for Boston.

As I mentioned in a previous post, my primary surgeon wants to see me for a knee post-op appointment when I am up for my hip surgery. I have been experiencing pretty significant knee pain lately which is making it difficult to walk. I have gone back to using a cane for assistance but unfortuantely it does not provide much relief. I am unable to ice my knee because it triggers a CRPS/RSD "flare."

It has also been determined that my post-op for my RPAO will be during my pre-op for my shoulder (5 weeks later). I am not sure when my shoulder pre-op appointment is scheduled for at this point.

We have been looking into getting a hot tub for therapeutic reasons (and of course, for fun). Warm water therapy is very beneficial for chronic pain sufferers and is a great therapeutic method for post-op treatment. It will not replace my formal therapy with Cam but will hopefully help with pain management. Warm water is also very soothing for my CRPS and is really the only contact I can tolerate at times.

I received my handicap parking placard today. Because I have EDS (a lifelong condition) I qualified for a permanent placard.

My RPAO is right around the corner. We leave for Boston in 3 weeks and I will be very busy preparing until then.

Saturday, February 26, 2011

Friday, February 25, 2011

Pain Clinic

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I heard back from Boston--both from my surgeon and the pain clinic at Children's. The pain clinic is trying to schedule an "urgent" appointment--which will hopefully be on March 17th when I have my blood donation. I am still waiting to hear back from the surgical coordinator so that I can schedule my first blood donation at the American Red Cross (if possible).


I spoke with my surgeon about my knee and how I am experiencing sharp, stabbing pain around the MPFL graft and in the front of my knee. The pain near the surgical site is new and a bit concerning. I will see him next time we are in Boston for a consult (post-op appointment) but it's possible that I either have scar tissue wrapped around the graft (restricting movement and tightening the ligament) or that a screw is pinching a nerve. The pain in the front of the knee is caused by the tears in the patellar tendon and an effusion. It's likely scar tissue has developed there as well.  I have no idea what this means in terms of how to treat it, but more surgery to the left leg is out of the question right now because of RSD. More trauma would cause more problems...more pain!


18 days until we leave for Boston
25 days until RPAO


Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow. 
~Mary Anne Radmacher

Tuesday, February 22, 2011

1 month

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I begin my countdown today with 1 month until my RPAO. The labral tear and FAI will also be addressed during surgery. Hopefully this is my last hip surgery...no scratch that! This WILL BE my LAST hip surgery! The surgery will be successful!

On Sunday I began taking Neurontin 3x a day! I am hoping to notice an improvement soon, as the burning is getting worse. I tried nerve cream- Neuragen Gel. That was a HUGE mistake. It left me with intense burning/stinging on top of my already burning leg!

I also got a new bed-Sleep to Live (200 series-tan). They use a diagnostic scan to determine my pressure points and it establishes the ideal alignment for my body. The scan determined that my ideal bed would be in the "tan" series. "Tan" is considered to be the softest, and the scan was right! It was heavenly. Unfortunately due to my excessive research, I read several reviews that told me to go up one level in firmness (to green). At the last minute I switched from "tan" to "green." The bed was delivered on Saturday and after 2 days I determined that I really wanted the bed to be softer. I got my 2nd new bed today and so far it's amazing! (click here for more information)

I was discharged from therapy last week. Technically I am not ready to be discharged, however because Cam cannot touch my leg due to my CRPS, there is no point in continuing with "formal" PT (insurance reasons). I still go 3x a week for "supervised exercise." I do the exact same therapy exercises as I did before, the only difference is that I don't need to schedule appointments..I can just show up! Unfortunately we found out today that I haven't been approved for the last 2.5 months of PT (another issue I have to work out). They covered me for 8 weeks and then apparently cut me off! 6-8 weeks is the "standard" therapy protocol for a MPFL reconstruction..but with EDS there is no such thing as "standard." I still didn't have quad function (at all) at 8 weeks post-op..and I am still seriously lacking in that area! Hopefully we are able to sort this out soon.

Friday, February 18, 2011

Thursday, February 17, 2011

Tuesday, February 15, 2011

Save the Date...again!

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My shoulder surgery is scheduled for May 6th.  I am relieved to finally have both of my surgeries set. Now I can start preparing. I am still waiting on the pre-op dates--that will determine when we leave for Boston.

Like last time, I have to donate 2 units of blood for my RPAO. One donation can be done at an offsite location-American Red Cross. The second unit must be done at the Blood Donor Center at Children's. I was able to schedule my donation at the BDC for March 17th (my favorite minor holiday..sad face). Once I hear back from my PAO surgeon's surgical coordinator I will be able to set up my blood donation with the American Red Cross. 

Today is a horrible flare day with my CRPS. Even having my pants touch my leg is extremely painful. I have been experiencing more swelling and discoloration lately and the burning has been excruciating at times. I am hoping Neurontin starts to provide some relief in the next week or so. I also heard back from my primary surgeon regarding seeing a specialist at Children's. He is trying to get me in to see one of the leading specialists in pediatric RSD/CRPS. Once again, I am blessed to have found such a wonderful team at Children's. It's always reassuring to know that you are receiving the BEST care..especially with my complicated case.

Monday, February 14, 2011

Think You Have EDS?

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Here is an article that I found very interesting when I was going through the initial stages of being diagnosed with EDS. Please keep in mind that no 2 cases are the same. If you believe you could have EDS please consult a genetic specialist for further clinical evaluation.

http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf

Please take the time to say a prayer for my friend Madeline. She has EDS and underwent reconstructive knee surgery today!

Friday, February 11, 2011

Save the Date!

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My RPAO is scheduled for March 22nd at the Children's Hospital of Boston. I was definitely hoping for something earlier but I am relieved to have a date set. I have been waiting a long time-(since December). My friend Marena (a Boston Hip Chick) has her RPAO the day before at Children's as well. It'll be nice to have a friend there with me. 

I am still waiting on the official date for my shoulder surgery and I will update when everything is finalized.

Thursday, February 10, 2011

Now and Then

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We heard back from Boston today with the new plan for my surgeries--I will be able to schedule tomorrow (at least my RPAO). Instead of doing the surgeries a week apart (during the same hospitalization), they will be separated by about 4 weeks. Dr. Kim felt very strongly about this as the PAO surgery is a very invasive and extensive procedure--understandable.

I have made a lot of progress over the last year, despite some major setbacks! My left leg has been through a lot and unfortunately the trauma from multiple surgeries (and EDS) has left me with CRPS in my left leg. Regardless, I have still come a long way.

Left Hip-Now and Then
Now (after 2 hip surgeries- LPAO and scope)
-I have ZERO pain (a miracle)
-I have a "normal" hip in terms of femoral head coverage and positioning
-I have a 6 inch scar (battle wound)
-No more clicking, popping, and catching with every step
-I CAN WALK

Then (August '09- October '10)
-Hip dysplasia (shallow socket)
-Labral tear and FAI
-Severe groin pain with sitting, standing, walking..even moving at all
-Subluxating hip
-Crutches
-Deep achy pain that radiated down the side of my thigh

Incision Progress



Post-op day 1






2 weeks post-op









3 weeks post-op








7 months post-op










Choosing to go ahead with the PAO was the best decision I could have made.

1 hip down. 1 to go.


"Anyone can give up. It's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength"


Wednesday, February 9, 2011

Monday, February 7, 2011

CRPS/RSD Video

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I came across a Discovery Health-Mystery Diagnosis of Reflex Sympathetic Dystrophy (RSD) and thought I'd share. The symptoms and pain description are completely accurate.

Note: RSD and CRPS are the same disorder

Part 1: http://www.youtube.com/watch?v=7OgAzmgX28w&feature=related
Part 2: http://www.youtube.com/watch?v=5oNxBe6LiLI&feature=related

My CRPS:
As of right now my left leg is the only limb affected (thigh, hip, knee).
Trauma: Surgery

Tonight was the first night of taking my nerve medication. I have to build up a tolerance and increase the dosage gradually. I am hoping that in a couple of weeks I notice a difference in the frequency and severity of my "episodes"

Sunday, February 6, 2011

Got Spoons?

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I came across The Spoon Theory while reading another blog and decided to share it with everyone! It truly captures what it is like to live with a chronic disability or illness. This is how I feel everyday! Somedays are worse than others but I need to "count my spoons" and know my limits. Everyday tasks are more difficult for me than for the "normal," healthy person!

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

If you have a friend or relative with a disability or illness--I hope this analogy will help you to better understand their life and the challenges they face everyday! If you are living with a disability or illness, this is a great way to help those around you to understand your daily struggles.

Saturday, February 5, 2011

Friday, February 4, 2011

Unlocked

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My post-op knee brace is officially unlocked-and finally! Next step is to be brace-free! I still have some major work to do to strengthen my quad enough to support me on my own!

To put into perspective just how dramatic my atrophy issues are..following this procedure (MPFL reconstruction), patients are typically in the brace for 6-8 weeks. I have been in this brace for 4 months and realistically have several months to go before I will be strong enough! However, I have had some pretty significant breakthroughs in therapy--elliptical and balance/strengthening exercises--so my recovery is finally heading in a positive direction!

I am still waiting to hear back from Boston to schedule my next 2 (hopefully last..for awhile) surgeries! I will post when we have a finalized plan and the dates are set!

Tuesday, February 1, 2011

Balance Beam

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I had a breakthrough in my therapy..or at least how to go about some of my exercises. Part of my therapy is "gait training"..or re-learning how to walk. Due to the instability in my right hip and lack of flexion (mobility) in my left knee and muscular strength in my quad, I have a difficult time stepping over the cones. I also get very distracted and disoriented when other people walk by me. Cam said that this is normal and to be expected. I haven't walked unaided (correctly) in a VERY long time and it's a lot for my brain to process.

Last week, while I was walking over the cones, I said (to myself), "ugh I have no balance." Cam overheard and said that it was ironic for a gymnast to have no balance. I told him that I walk better on a balance beam than on the floor (always have)--so he set up some foam beams as a test. Sure enough I walked perfectly across the beams. I didn't even have to pause for 3 minutes before each cone to concentrate. He found this to be funny, noting that most people who are healthy find a beam more challenging (for obvious reasons). Of course, I grew up as a competitive gymnast and trained for years on a beam, so to me it's only natural. Instead of focusing on a widespread area, the beam allows me to focus on an isolated zone. Gymnasts have the ability to block out all distractions (sounds, people moving) when on the beam, so it's no surprise that incorporating this into my therapy proved to be no different. I now do all of my "gait training" on the beam..and we were even able to add some new balance and strengthening exercises as well.

Who would have thought that after the mess gymnastics left me in (although I can't entirely blame the sport for me having an undiagnosed genetic condition), it would actually prove to be a useful tool in my recovery!