Posterior Labral Tear

I saw Dr. Shiple today for a quick follow-up on my knee and evaluation of my shoulder. He used the ultrasound to check for tears in the ligaments and joint capsule. As it turns out I have a posterior (back of shoulder) labral tear. He could not get a good view of the joint capsule, however assumes it is either torn or stretched (which means the same thing in my case). Looks like I will just have to wait until I see my shoulder surgeon to get a better idea of how to handle this.

Read More

Shoulder Surgery?

I sent my surgeon an e-mail update about everything that has been going on--specifically my shoulder instability. He literally responded in 15 minutes and wants me to see a shoulder surgeon during my visit to Boston in December. This surgeon has helped my hip/knee surgeon with my knee surgery and works closely with him on a lot of cases. He has experience with EDS patients which is always comforting news. We are trying to schedule an appointment in which both surgeons are available for a consult/post-op appointment. I also asked my surgeon if it makes sense to have the shoulder surgery and RPAO/scope relatively close together (understanding that I would be in a wheelchair for most of my recovery) and he said that as long as my PAO surgeon agreed there shouldn't be any problem with that. That was probably the best news I have heard in awhile because I was starting to worry about my right hip supporting me and holding off on that surgery for several months. Although I am not the biggest fan of spending an extended amount of time in a wheelchair, if it means I get these surgeries out of the way sooner then I'd rather that. I would really like to get back to my life (school, work, etc) by next fall at the latest!

I see Dr. Shiple tomorrow for an evaluation of my shoulder and follow-up on my knee. Maybe the ultrasound will give us a better understanding of exactly what is going on inside my shoulder. Unfortunately given EDS, I don't need to have a torn ligament or joint capsule to qualify for surgery. Just the understanding that my shoulder is subluxating is enough to warrant the need to have it fixed. The more I subluxate, the looser I become--which is something we want to avoid as much as possible.

I will update tomorrow after therapy and Dr. Shiple. Hopefully we have an appointment set up in Boston by tomorrow as well.

Please take a moment to say a prayer and send positive, healing thoughts to two of my Hip Chick friends, Marcie and Jessica, who are both having a PAO tomorrow!

Read More

No more Dilaudid

I gave Dilaudid a try--against my better judgment, knowing anything stronger than Vicodin makes me sick! After today I will never take Dilaudid again.

Read More

Goal 2-ON HOLD

I had PT today but it didn't go well. Not because of my knee or left hip but because everything else seemed to cause problems. I have been having horrible back pain lately that keeps me up most nights. My heating pad hasn't been providing enough relief either. I woke up and could barely get out of bed this morning! This is most likely due to the fact that I have been compensating for over a year and I am completely out of alignment. I have also been dealing with a shoulder that doesn't want to stay in place. I am pretty sure I actually dislocated it this weekend as I had to move it around to "pop" it back in. That was painful and simple movements cause sharp pain in the front of my shoulder. I can't lift anything with my left arm and certainly cannot use crutches anymore (which is a problem). My elbows continue to lock up and always hurt--thankfully most of the time it's not a sharp pain but a dull ache. And unfortunately I think my right hip has finally reached it's end point. It barely supports me at all (dislocates frequently), my groin pain is just as bad as the left used to be, and it pops with every step. I'd be back on crutches if it weren't for my shoulder. Dr. Shiple actually said that I should consider using a wheelchair, but given the fact that weight-bearing plays a HUGE role in regaining strength, it's not a realistic solution. For now, I am taking Valium for muscle spasms--and although I absolutely hate pain medications I have come to the conclusion that I don't have a choice anymore. I was prescribed Dilaudid because the Vicodin doesn't help.

Most of my therapy involves standing (weight-bearing and balance) and I was unable to stand today because of my right hip. I managed to do a balance exercise but Cam had to hold my right leg so that I didn't have to put any weight on it. I couldn't do most of my table exercises because I couldn't lift my legs without back or hip pain. Just lying on the table was painful. I worked on flexion for quite awhile but my fibula has been slipping in and out a place and it's a very uncomfortable (not to mention painful) feeling so it took me a long time to finish simple reps of 10.

My shoulder is causing major problems. In reality, I needed to have my right hip fixed 2 months ago--I have now reached the point of no return. Unfortunately given the instability of my shoulder and lack of quad strength I am in no shape to go through with the right hip surgery right now. I most likely need another surgery on my left shoulder and considering I will need to spend 10-12 weeks on crutches following my RPAO/scope, the shoulder surgery needs to be done before my hip is corrected. I just wish I only ever had to deal with 1 joint at a time but it can never be that simple!

I am traveling to Boston soon for a post-op appointment and will hopefully see another specialist at Children's who has experience with EDS patients. He worked on my knee with my surgeon, and has a specialty in shoulders. Children's Hospital of Boston really seems to be the perfect place for me and I am so thankful to have found a great team of surgeons who really care and understand my complicated case.

Hopefully in the next week or so I will have more answers and a better idea of what my upcoming schedule is going to be like.

On a positive and happy note- I got a beautiful irish throw blanket and I am in love with it! It says Eringobragh on the top and has a claddagh ring with the meaning written below- Friendship, Love, Loyalty!

Read More

Goal 1- COMPLETE

I just got back from therapy and am happy to say that I passed my goal of 70 degrees of flexion! I was measured at 85 degrees and Cam was very happy with my progress. My weekend homework is to get my knee to bend to 90 degrees by Tuesday!

Goal 2: 90 degrees...only 5 degrees to go : )

I also did squats on the total-gym trainer today! I have made huge improvements and although for the typical patient my exercises may seem very basic and easy--for me it's not just a step but a leap forward in my recovery of the left leg! I still have a very long road ahead of me but I am reaching my goals and am making progress which is what recovery is all about!

Read More

60 Degrees

Cam told me last week that my only PT "homework" was to bend my knee to 60 degrees. He told me that if I was unable to do that, that therapy would be very painful on Tuesday (today). I was unsuccessful this weekend, but I am happy to say that I am now able to bend my knee to 60 degrees! He definitely wasn't joking when he said it would be painful though! I am still not comfortable with keeping my knee flexed at 60 degrees but Cam said he is happy as long as I am progressing in terms of ROM. Hopefully I can meet the next 2 flexion goals. At this point in my recovery I should be at 90 degrees but I am not exactly on schedule. The goal is to get back on track by next week! Should be a fun week/weekend!

Goal 1: 70 degrees by Thursday

Goal 2: 90 degrees by Tuesday

I spoke with Dr. Shiple today. I see him on November 3oth for a post-op appointment and he will evaluate my shoulder as well. He said there is a chance I tore something when it popped out and if it continues to subluxate or dislocate then we need to discuss further treatment options--therapy won't do the trick. I made it very clear that I do not want to have surgery on this shoulder again (if I can avoid it) and if there is a tear or if the ligaments are too loose then I may actually give PRP (Platelet Rich Plasma therapy) a shot. Dr. Shiple has not done PRP on a patient with EDS so it would be an educated guess as to whether or not it will work on me (it can't hurt though). The PRP would be combined with prolo injections (my favorite). I won't know much more (regarding my shoulder) until November 30th! Until then I will focus on my knee recovery and will avoid movements that cause my shoulder to pop out--which is something I can't always control.

Read More

Exciting!

Oh my goodness--I am so excited! The first part of the 7th Harry Potter movie premieres this Friday in theaters. I already have my ticket and can't wait! It should be amazing!

Tickets also go on sale this Saturday for the Kenny Chesney concert this summer! That's going to be a great concert. What an exciting weekend

: )

Read More

Not Again!

My left shoulder (the one I had surgery on in 2007) popped out again..not once but 3 times! Back to Dr. Shiple to discuss my next steps! Somehow I sense more injections in my future. On a positive note--at least the surgery lasted 3 years. Given I just spent 6 months on crutches I imagine my shoulder was very angry with me.

I will update more after I speak to Dr. Shiple!

Read More

4 Weeks Post-Op

I am just about 4 weeks post-op from my left knee reconstruction. In that surgery I had a scope, lateral release, and MPFL reconstruction with a cadaver tendon. I have 3 pins in my knee--and this time they can't come out because they are holding the new tendon in place. I thought I'd post on my progress so far and end with an updated picture of my incisions (don't worry, they aren't gross).

I started PT (with Cam) at 2 weeks post-op. I have only had 3 sessions and an evaluation so far. In those sessions we learned once again that my quad went on a long vacation and hasn't made any indication of wanting to return. By that I mean that I still have ZERO quad strength--you can compare it to a newborn baby's thigh--and I cannot even begin to walk without crutches if the brace is unlocked. I cannot lift my leg up without physically picking it up, and I still have some major swelling in my knee (something I am not used to...as I don't typically have inflammation following trauma). Unfortunately this also means that instead of being off of crutches I am still on them (and for awhile). I have spoken with my surgeon and he wants me to walk more with the brace locked in extension--to prevent any further elbow damage, and to help strengthen my quad as much as possible. Weight-bearing does far more in terms of strengthening than any PT exercise. It also helps activate other muscles that have been inactive. I am set to travel back to Boston for a post-op in December and until then my only 2 goals are:

1) Strengthen the quad

2) Range of motion (ROM)/flexion

In terms of ROM/flexion, I am not a fan. I guess I expected that after going through a PAO where they literally broke my pelvis is 3 places (and placed 3 screws the size of a pen in my hip), that knee surgery would be a piece of cake. Well I was wrong. Honestly, the knee surgery recovery (so far) has been harder and more painful than both of my hip surgeries. I now understand how Total Knee Replacement patients feel when the therapist forces the knee to bend to a certain degree. I am still restricted to 60 degrees until Tuesday (when I am allowed 90 degrees..yikes), but Cam has only managed 45 degrees and even that was painful. If measured to my comfort I'd probably be somewhere around 30 degrees, but of course that would be too easy. Cam basically has to flex my knee for me and even with him working through the inflammation it still doesn't go very far. In terms of following post-op protocol--I am way behind on flexion/ROM. However, for me (having EDS), post-op protocol doesn't mean much.

Standard patients would be off of crutches, and walking with the brace unlocked. They'd typically have enough quad strength to support themselves and they'd most likely have around 60 degrees of flexion.

As for me (as I mentioned above)--I am still living with a newborns thigh and I'm working to try and strengthen that enough to support me. If I were to take a step with the brace unlocked my knee would give out, most likely resulting in a dislocation. I have about 30 degrees of active flexion, and 45 degrees of forced ROM. Instead of wearing the brace for 6 weeks, I will most likely be in the brace for 8-10 weeks. The brace can be discontinued once I have normal quad strength and at least 90 degrees of flexion.

So while I am not progressing at the rate I would like, I am still very thankful that I had this surgery (not that I really had a choice). I still have NO groin pain, and no left hip pain--which to me is a miracle. When I am going through flexion, my kneecap seems to be tracking normally and doesn't feel like it's going to dislocate--another satisfying and reassuring feeling.

Unfortunately my right hip is deteriorating and has become more unstable, which makes some exercises in therapy impossible. I can't have my right hip fixed until my left knee is fully recovered and at this point that could be months. My goal is late January or February, if possible.

As mentioned above, here is an updated picture of my incisions...

Read More