Update from Boston- Hip and Knee

I saw my primary surgeon in Boston on July 12th. We discussed my right hip and left knee in this visit. In my "Welcome Back" post I talked about what I thought the plan would be and it did not change all that much.

He presented my case to the hip team Thursday morning. They went over every option for my right hip and my PAO surgeon could not believe my hip is this unstable. Options for the right hip include another PAO for more anterior coverage, a femoral osteotomy to decrease anteversion, and re-doing the graft I had placed in December 2017. Everyone agreed that the graft should only be repaired/replaced if everything else is addressed too as it is likely to fail again if there are other factors contributing to my instability. That would be one massive hip surgery.

I explained that I feel like the kneecap is the worse of the two and that I think that we should focus on the knee and readdress the hip if/when something were to change. We talked about the risks of leaving the hip as is. Risks include dislocation that requires ER reduction (either closed or open), avascular necrosis, worsening pain, and arthritis from wear and tear from instability. 

He agrees that we can focus on knee and discuss the hip if the pain becomes unbearable or there are signs of avascular necrosis. We both believe it is possible that relying on the right hip during recovery for left knee could push it over the edge. 

The plan for the knee will be to replace the MPFL graft (original MPFL reconstruction was in 2010) which is completely ruptured, do a tibial tubercle transfer osteotomy, and provide lateral support as well to protect the kneecap from dislocating medially  His goal is to get the kneecap to sit in the center of my knee (it does not do that at the moment) while stabilizing it from both sides. He said it will require at least 3 surgeons so it will be a full house! The surgery will be in early December. 

While in Boston for the week I was able to spend some time with one of my friends that my surgeon introduced me to 2 years ago! We went mini golfing!

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Bahstun

This week was very busy. I had four appointments and we moved Shane into his dorm (he has pre-season for soccer). I am really going to miss him. He's my best friend and it's going to be so weird without him at home. However, I am very happy for him and I know he will do great this semester--academically and athletically. We are traveling to Bryant in 2 weeks for the first games of the season. I can't wait to wear my "Bryant Soccer" t-shirt!

On to the appointments...

This week I received both good and bad news. I saw all of my surgeons and a back specialist. I have several updates so bear with me...

Shoulder Post-Op:
I saw my shoulder surgeon for my 3 month shoulder post-op. He was very happy with my ROM (or lack of in some directions) at this point. I need to continue with physical therapy to strengthen the muscles and work on some more range of motion. We have been very cautious with therapy exercises because my surgeon made a point to say that we need to progress slowly.

Ankle Surgery Discussion:
I also discussed ankle surgery in more detail with my ankle surgeon. He explained what he wants to do and what the recovery will be like. He believes the best option is the Chrisman Snook procedure--a procedure that he really only performs on EDS patients. With this surgery he will create a  tunnel in the fibula and weave a cadaver tendon through it. Then he will screw it to the Talus and Calcaneus bones. The cadaver tendon will essentially replace my useless ATFL (anterior tibiofibular ligament) and CFL (calcaneofibular ligament). I will spend 2 weeks in a soft cast, 4 weeks in a hard cast, and 4-6 weeks in a walking boot. Physical therapy will follow and will be extensive. If you are interested in learning more, I found a case study article-- click here (it is a .pdf--if you have trouble opening .pdf files please e-mail me with the elephant button and I can e-mail the article to you).

Visual of Chrisman Snook 

*We are hoping to schedule for December 16th.

Knee Evaluations/Follow-ups:
I saw my surgeon for my knees. Thankfully my left knee is stable enough to stop wearing the knee brace...for now. However, he explained that because my "Q angle" is still off, I may require an Osteotomy (Tibial Tubercle Transfer surgery) at some point. He anticipates at some point it will stretch back out and I will experience subluxations/dislocations. Now the question is when...

As for the right knee--it's a mess. It's very loose and subluxates frequently. My "Q angle" and "J-curve" are pretty far off the normal range. I have EDS laxity and malalignment in the leg working against my kneecap. Both surgeons feel my best option is an MPFL reconstruction with a TTT Osteotomy (as mentioned above). My hip/knee surgeon wants me to have the surgery a week after (or before) my ankle surgery in December. He is going to check with my ankle surgeon to see if it's reasonable. Having them a week apart means one recovery verses two and it will make it easier for my shoulders. They ordered me a new brace for my knee--Bledsoe 20.50! I should have it by the end of next week.

My new knee brace
Bledsoe 20.50

RPAO/Hip Post-Op:
My PAO surgeon said that my left hip joint space is a little more narrow than my earlier x-rays. It wasn't a huge difference but something that worried him a bit. We will continue to watch it closely and I will have x-rays this spring. Hopefully it doesn't change in 6 months because a PAO is supposed to PREVENT cartilage deterioration--at least for many years.

The right hip (joint wise) looks good and he was happy with the coverage. The bones are completely healed. I will post the x-rays soon. He believes my groin pain is either the psoas or rectus femoris. I will continue PT with Cam for strength and gait training.

Unfortunately the appointment with the back specialist did not work out so we will try to see someone at Children's instead--hopefully during our next visit.

The Children's Hospital of Boston is starting a formal Ehlers Danlos Syndrome center/program. It will be a multidisciplinary program with many different types of specialists. There will be several geneticists, orthopedic surgeons/sports medicine doctors (my primary surgeon is one of the orthopedic surgeons in the program) anesthesiologists, rheumatologists, physical therapists and several other specialties. This is important for me because now all of my specialists will be in one hospital, working together. Because EDS is a whole body disorder it's important to take everything into account when making medical decisions.

I see Dr. Shiple next week and I have a lot to talk to him about. I am hoping to also have an ultrasound of my right MPFL and right rectus femoris and psoas. I will also see Cam for PT.

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