Discharge Day!

Surgery to remove my (R) tibia hardware was yesterday. I totally underestimated the pain I would feel as a result of this procedure (thank you Kayla for telling me not to do this at the same time as my left knee surgery in December). I woke up in the PACU (recovery room) with 10/10 pain despite having received IV Tylenol, Dilaudid and Toradol in the OR while still under anesthesia. That meant that I was not due for more medication for almost 4 hours. Unfortunately, even when I was able to take more Tylenol and Toradol, it did absolutely nothing. So I have been in A LOT of pain since waking up from surgery. It is hard to distinguish what is post-op pain and what is CRPS pain but it is likely a combination of both. We are hoping that CRPS will settle down and return to a state of remission soon, but surgery can exacerbate the situation (which we knew going in but because the hardware reaction was the cause of the CRPS we did not really have a choice...it had to come out).

Plate (minus the 7 screws)

The site is covered with a dressing but is very swollen. I have a walking boot (as discussed in my previous post) because I have 7 holes in my bone. These holes will fill in over the next few weeks. I see my PCP in 2 weeks to check the incision. I will get a set of x-rays at 3 weeks post-op to make sure they are filling in. I will send the x-rays to Boston for review. I am allowed to weight bear as tolerated, which is important because my left kneecap is not able to support all of my weight at this point anyway (hence why I will be having another surgery in December to stabilize it).

Dressing and swelling

I did, however, have the BEST room in the hospital with amazing views of the city. It was HUGE. I also kept the hardware as I do with all of my surgeries.

Does not get better than this view

I had my favorite PT this morning to make sure I was safe while crutching. He was surprised to see my name on the list and also to see how much better I was at crutching with this admission vs. hip surgery December 2017 (where I could not advance my leg on my own).

Hopefully CRPS calms down soon, the post-op pain doesn't last too much longer and I can get back to baseline with this leg in the next few weeks.

A HUGE thank you to my uncle for taking me to surgery, waiting around all day and for several hours in the recovery room, and for picking me up today after being discharged. Words are simply not enough.

I return to Boston in mid-October for a post-op and follow-up on my left knee to finalize the surgery plan for December.

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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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