Back to Boston

Yesterday was my last day of therapy until after my surgery! My knee is still improving and I am gaining more flexion. I will work on maintaing the ROM while I am in Boston but plan on resuming formal therapy in a couple of weeks!

I leave tomorrow to head up to Boston! My dad and I will be staying with my aunt and uncle (like always). On Monday I have my pre-op appointment with my surgeon and pain clinic appointment. I should have a better idea of what will be done during surgery and what to expect for recovery. I am also hoping to have a plan for my CRPS/RSD as the hypersensitivity and flare ups are still bad. I will post an update after my appointments.

On Thursday I have my post-op appointments with both hip surgeons! I will also discuss my right knee situation to see if we can come up with a plan on how to prevent my kneecap from dislocating and stop my fibula from slipping out of place. My mom will switch places with my dad on Thursday. Friday (May 6th) is my shoulder surgery.

I had a great week with Marena! It was a lot of fun. We went to the Disney store, got pedicures, ate at my favorite pizza place- Big Cheese, went out to dinner, watched The Lion King movies, and listened to Goodnight Moon! 

Funny story: My friend Emma had her hip scope with my surgeon on Friday (she has hip instability and Ehlers Danlos Syndrome). When my hip surgeon went to check up on her she mentioned that she had been texting me earlier that day. He asked to reply and when she realized he was being serious she gave him the phone. Yes, I received a text message from my surgeon. Probably one of the funniest, most unexpected moments ever but that is why I love my team of doctors and Children's Hospital of Boston! 

GO BRUINS! 7-3 victory over the Flyers!

Celtics game tomorrow!

...it'll be great to watch the Bruins and Celtics games while IN BOSTON!

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Hakuna Matata

I saw Dr. Brown today (my PCP). We discussed my back pain and inability to use a heating pad, neurocardiogenic syncope, dysautonomia, asthma, and the return of my seasonal allergies. It was a very productive appointment. I am so fortunate to have a team of specialists who truly care and listen to my problems.

As for my back, there is no medication I can take because I am taking Neurontin (for RSD). A muscle relaxant (Valium) and Neurontin could cause respiratory depression, which is already a problem for me. I can't use an electric heating pad because of my burn, so Dr. Brown recommended I use the thermacare wrap--it won't burn me! I have one on right now and although it's not as hot as a heating pad it feels great!

Dysautonomia and neurocardiogenic syncope were confirmed today. They are both related..and connected to EDS as well. I was also shocked to learn that my "low firing rates" in my muscles (determined by the EMG) is also consistent with neurocardiogenic syncope. There is not much I can do about either "disorder." It is important to be aware of my triggers and stay on top of them to prevent any syncopal episodes. I need to maintain a high salt diet and drink plenty of fluids.

The return of my seasonal allergies has also made my asthma worse. I was prescribed to Symbicort to help with my asthma. Unfortunately I cannot take most allergy medications because of the interaction with Neurontin. The reaction could also cause respiratory depression. Instead I was prescribed eye drops and a nasal spray that travels into the tear ducts. My eyes are the worst..at least right now!

Last night I watched The Lion King with Marena! What a classic.We also listened to Goodnight Moon (3 times) and both fell asleep. I felt so much better this morning after having slept for 8 hours. I need to get my sleeping patterns back to normal before my shoulder surgery.

I have therapy tomorrow and have a lot to tell Cam! Marena and I are going to get pedicures as well. I think we deserve them.

Marena bought me an adorable dog from Mary Meyer! I named him McGee (from NCIS). She has a monkey named Nanerz. She also bought me a pink picture frame with BFF engraved on it. Now I need to find the perfect picture of us! I got a Victoria's Secret fragrance spray! It smells amazing! Thanks Marena..you're the best <3

Best Friends

Hakuna Matata...it means no worries (for the rest of your days)!

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Oh Mister Sun

I have not been sleeping well due to pretty severe back pain. My SI joint is almost completely back in place thanks to Dr. Shiple, but the rest of my back is in spasm all the time. I can't sit comfortably (upright posture or slouching), I can't lie on my back...really I can't find any position that's comfortable. Oh yeah, and I can't use my heating pad--the one thing that helped! My burn, however, is looking amazing and is almost completely gone!

I had my EMG today to determine whether or not I have a neuromuscular disorder causing my atrophy problems. The test was uncomfortable and a little painful at times. I definitely did not enjoy the electric shocks and needle pokes. The doctor that administered the test said that it looks conclusive--I do NOT have a muscle injury causing my atrophy. I do however, have a low firing rate which I will discuss with Cam at PT this week! I will wait to hear back from Dr. Shiple with his take on the report as well!

My best friend Marena is coming to visit today! I can't wait to spend the rest of the week with her! We are both 5 weeks post RPAO--as I mentioned in an earlier post she was my roommate in the hospital. What a great room we had ; ) never a dull moment in 1002NW.

The weather yesterday was unbelievable. I do not understand how it can go from 40 degrees one day to 90 degrees the next. It was absolutely gorgeous out and is expected to be warm and sunny today as well! Usually warm weather makes me think of country music lyrics but today I thought of a Barney song that I am sure everyone remembers--Mr Sun Song! (I blame the electric shocks from my EMG for making me think of the imaginary purple dinosaur).



Oh Mister Sun, Sun
Mister Golden Sun
Please shine down on me

 



All Over Me- Josh Turner
(This is more along the lines of what I would usually have picked)

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4 Weeks Post-Op

Today marks 4 weeks post-op from my RPAO and knee revision surgery. I am down to only taking Tylenol when needed. My groin is a little sore but that is to be expected. Muscles and ligaments were cut and they are still healing. Overall my hip is doing well and my incision looks great. My knee feels so much better than before surgery. ROM is still difficult but I don't have ripping pain anymore. Cam was even able to do some forceful ROM today, which I haven't been able to tolerate since October.

 (incision 4 weeks post-op)

Unfortunately my back is still killing me and there is no way to get my SI joint back in place. This makes sleeping nearly impossible and moving very difficult. My right kneecap has been shifting and the quad has atrophied even more. I have also been dealing with a subluxating fibula on the right side. It causes major swelling and pain. Cam taped it (kinsesio tape) to provide some more support. The stabilizing brace I wear to prevent patella subluxations does not provide stabilization or support for the fibula.

I am up to 1800mg of Neurontin for my RSD. The hypersensitivity is still very painful and even the slightest touch can trigger a flare. I can't "sleep" with a blanket on my leg and most of the time I wear shorts. I will see my pain specialist at Children's after my pre-op appointment on May 2nd.

The burn on my back has gotten significantly better! I use an all natural aloe gel and a 100% Organic healing lotion that not only helps treat burns, but is great for muscle aches and joint pain related to Ehlers Danlos Syndrome. It was quite a shock to read the label and see EDS listed. I owe the guy at the Natural Foods store a HUGE thank you!

(click image to view larger)

Kathy's Family- 100% Organic Healing Lotion

My pre-syncope episodes have been more frequent but I have been able to pick up on more triggers. Going from hot temperature to cold, postural changes, and not having enough salt in my diet on a given day are all known triggers at this point. It's very important to know my triggers so that I can stay on top of my symptoms.

I leave for Boston next week. All of my appointments are set up! It will be a long week of consults and post-ops but I will have a better idea of what to expect with my shoulder surgery. I also hope to have a plan for my right knee and how to stay on top of my instability. Hopefully we can get on top of my RSD as well! I will be meeting another Hip Chick while in Boston. My friend Katie Saville is having her PAO on May 2nd with Dr. Millis. I am very excited to meet her. I will be visiting her during her stay on 10NW.

My best friend Marena is coming to visit me next week! She was my roommate in the hospital and we are both 4 weeks post-op. It should be an interesting week. We will both be in a wheelchair for outings and still need assistance doing everyday tasks.

*

"Healing is a matter of time, but it is sometimes also a matter of opportunity. Even if you fall down in the process, take the moment to learn and push harder."

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WARNING: DO NOT SLEEP W/ HEATING PAD

The title says it all. Why then did I completely disregard a very clear message and continue to sleep on my heating pad? Because I have chronic back pain, recurrent SI joint subluxations, muscle spasms, and several ribs out of place on any given day. To me a heating pad is a godsend. It eases my back pain and allows me to sleep--at least when my other joints aren't causing their own problem. I have been sleeping on my heating pad for over a year and cannot sleep without it. Unfortunately, I am no longer allowed to use a heating pad (or any type of heat on my back) at all because it branded me with what has been called "Toasted Skin Syndrome." No, this is not a joke! I describe it as a beehive patterned "burn" all over my back. It is brown in some areas and pink/red in others but doesn't hurt. My mom bought me Skin Gel-Ultimate Skin Treatment and 100% organic healing lotion (recommended by the lovely man at the Natural Foods store--he knew exactly what she was describing and what products would be the most helpful). I hope my beehive heating pad burn will disappear before it's time to put a bikini on! It is definitely not what I had in mind to bring with me to the beach.

*DO NOT SLEEP ON YOUR HEATING PAD! THE WARNING WAS RIGHT AFTER ALL! IT CAN BURN YOU!

As I mentioned above in my rant about my heating pad, my right SI joint has subluxated...again. It is so far out of place that I can barely move. I have radiating pain down the back of my legs and severe muscle spasms. I can't seem to find a comfortable position. I had PT today and talked to Cam about my options. He did some muscular control techniques but agreed that it is pretty far out. There is a noticeable difference in the rotation of my pelvis. Unfortunately, there is nothing we can do to reduce it because I have 3 fractures in my right hip. Not being able to use the heating pad means no relief and no sleep.

I saw Dr. Shiple on Tuesday for my post-op appointment. Everything looks good! 

I have an appointment with the pain clinic on the same day as my pre-op appointment for my shoulder. Hopefully we can come up with a plan to get my RSD under control before the hypersensitivity spreads to the rest of my leg. 

"Next time you're stressed, take a step back, inhale, and laugh. Remember who you are and why you're here. You're never given anything in this world that you can't handle. Be strong, be flexible, love yourself, and love others. Always remember, just keep moving forward."

Here are some photos from my birthday! 

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The BIG 2-1

Tomorrow marks 3 weeks post RPAO and left knee repair. I am definitely noticing a difference in my energy levels.  I have been able to go on a couple of outings lately. It's great to get out of the house. On Saturday we went to The Farmhouse for my family birthday dinner. It's one of my favorite restaurants! Yesterday I went to Shane's soccer game. It was the first round of the state tournament- they won 5-1!

In terms of post-operative pain, I am still getting by on 2 Tylenol a day. Piriformis syndrome is really the only noticeable pain--and it's rather annoying. I find that when I am sitting for a long time my hip (or butt) pops when I stand up and it's followed by a knife stabbing sharp pain--deep in my butt. Other than an angry piriformis muscle, my hip doesn't really bother me! 

My knee feels so much better than before surgery. I don't have the same ripping pain when weight-bearing and I feel less restricted in terms of motion. ROM is still difficult but I have more passive range of motion than before the 2nd surgery. Active ROM is still painful but definitely easier. My kneecap tracks correctly and I am working with Cam to regain the lost quad strength on the left. I still wear a stabilizing brace on the right knee to prevent dislocations. I continue to do quad squeezes on the right but it's painful because my kneecap doesn't track correctly. This seems to be the same progression as my left knee, the only difference is that I am wearing a brace BEFORE my kneecap decides to subluxate. My joints have a mind of their own. Time to work on some body/mind control exercises to reconnect everything to one central place--the brain!

CRPS/RSD Update: There was concern going into my 2nd knee surgery that my RSD would spread or get worse. The good news is it hasn't spread. Bad news- the hypersensitivity in my left knee is horrible. I can barely touch my knee without severe burning. I have also noticed that my left leg has been sweating A LOT more than before surgery...and significantly more than the right leg. I have increased my Neurontin to 1600mg (next week 1800). I will be calling the pain clinic at Children's to make an appointment to see my CRPS specialist. I saw him before my surgeries in March and he is wonderful. He was the first pain specialist on the Ehlers Danlos Syndrome National Foundation board, so he truly understands my complicated case. Hopefully we can come up with a plan for the RSD and get it under control. 

I see Dr. Shiple tomorrow for my first post-op appointment. He will check my incisions and surrounding area to make sure everything is healing nicely. I will not be having an x-ray because I have a post-op with my PAO surgeon in 3 weeks. At that time I will have my first post-op films to see how the bones are healing.  I will also see my knee and shoulder surgeons. 

Today is my 21st birthday! I plan on going to a restaurant/bar with a couple of friends. I will be going in style in my wheelchair! Just because I am recovering from 2 surgeries doesn't mean I can't celebrate like everyone else!

"A disability may slow you down, but it does not have to stop you from doing what you want to do. Sometimes you just have to do it differently."

Happy Birthday to ME!

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Life

Life isn't a destination, it's a journey. We all come upon unexpected curves and turning points. Everything that happens to us shapes who we are becoming. And in the adventure of each day, we discover the important things in life and why they're important.

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Back to PT

I had my first post-operative knee PT session today. I am very limited in what I am capable of doing because of my right hip restrictions. Today was the initial evaluation which means measurements and some light exercises. I did some quad squeezes (big surprise), heel slides with a ball (helps keep my fibula from slipping out of place), and some knee kicks (with my leg hanging off the table). I was successful with all of the exercises and reps that I was given--although it was definitely painful. I will only be in PT for 4 weeks until we head back to Boston for surgery!

As for the right knee--it is too soon to tell what the progression is going to be like. All I can do is quad squeezes until my hip restrictions are lifted which means I will likely lose more muscle strength. As mentioned previously I will wear a stabilizing brace as a preventative measure--I can't afford any subluxations or dislocations. Hopefully that is enough until we can actually start formal therapy.

I am also beginning to work on desensitization of my left leg to help with my RSD therapy. At this time my left knee is extremely hypersensitive. I still have burning throughout the leg but have not experienced a "flare" since before the surgery. I will hopefully see the pain specialist when I head back to Boston for my shoulder to discuss my RSD and a potential nerve block (yikes) for my surgery.

A big thanks to my friend Ashley for the awesome birthday/get well box! I love it and it couldn't be more perfect! I can't wait to wear my socks and eeyore shirt! Love you!

I am excited for my 21st birthday on Monday! I can't wait to celebrate--Hip Chick style...in a wheelchair ; )

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2 Weeks Post-Op

Today marks 2 weeks post-op from my RPAO and left knee surgery. In terms of post-operative pain I am doing great. I take 2 extra strength Tylenol a day and a baby aspirin to prevent blood clots. I am still taking 1200mg of Neurontin for my CRPS/RSD (soon to increase). I am no longer taking Celebrex but I take Valium when needed--which hasn't been necessary in a couple of days. My steri-strips have all fallen off (both knee and hip) and my incisions look very neat.

Piriformis Syndrome is still kicking my butt. I have to adjust my sitting positions often to avoid putting too much pressure on the piriformis muscle. I have found that lying on a heating pad helps a lot! Also, from past experience sitting on a tennis ball has provided relief.

Unfortunately my pre-syncope issues (pre-fainting) have come back. I mentioned in a previous post that I have Dysautonomia--a secondary condition to EDS. With that comes hypotension problems (low blood pressure). I have Orthostatic Hypotension and Neurocardiogenic Syncope (neurally mediated hypotension). A dramatic change in temperature is one known trigger for me--which was the case today. After my shower--the temp change from hot to cold triggered a drop in blood pressure and heart rate. I immediately felt like I was going to blackout. I have never actually fainted from one of these episodes because I am fortunate to get warning signs. Some people with hypotension/syncope problems have no warning signs and just faint.

Tomorrow I have my first PT session with Cam. I definitely need to work on quad strength--again! Both quads have diminished dramatically. This is particularly disturbing for my right leg as my kneecap has started to shift and track incorrectly. My mom ordered a new stabilizing brace to help prevent subluxations. I will be having an EMG in a couple of weeks to see if there is any neurological problem causing my dramatic atrophy issues.

Both shoulders are still subluxating so I am very limited with crutching. This also has a dramatic impact on my quad muscles because I am unable to use them as much! Weight-bearing does a lot more for quad strength than quad squeezes.

I have my pre-op and post-op appointments set! My dad and I will head to Boston on May 1st. I have my pre-op appointment on May 2nd with my shoulder surgeon. I am also hoping to get a better idea of what the plan is for my right shoulder (which recently started subluxating). On May 5th I have my post-op appointments with my hip surgeons. I will need to talk to surgeon about my right knee and see what we can do to prevent any dislocations. May 6th is my left open shoulder reconstructive surgery. It is an inpatient procedure--most likely 1-2 nights depending on pain control.

I had my first outing on Saturday. I went to Victoria's Secret with my mom to use my $10 off card they sent me for my birthday. I also went to Big Cheese to have lunch with my mom and Shane!

My birthday is in less than 1 week! The big 2-1

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X-Ray and Incision

Post-op day 1- dressing after drain was removed

Incision with steri-strips- 1 week post-op

Before and After x-rays- taken in hospital at 6 days post-op

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A Pain in the Butt

My pain is finally under control (for the most part), although my old friend Piriformis Syndrome has returned. Piriformis Syndrome is a condition in which the piriformis muscle irritates or wraps around the sciatic nerve. To simplify the description, it's a pain in the butt (literally). It is unfortunately common following a PAO and I have plenty of experience with it.

I am still taking Tylenol, Valium, and Celebrex for my pain. Tomorrow I will try to skip my Celebrex doses, as my pain has definitely been improving. I have to be off of Celebrex at least 5 days before my shoulder surgery and cannot consume alcoholic beverages while taking Celebrex--I turn 21 in 10 days!

I start PT for my left knee (post-op) and RSD on Wednesday with Cam! I will only be in therapy for about 4.5 weeks before I head back up to Boston for my left reconstructive shoulder surgery. I will not be able to start therapy for my right hip until at least 12 weeks post-op! I will also be seeing Dr. Shiple in 2 weeks for my first post-op appointment to check the incision.

Unfortunately while I was in the hospital my right shoulder (the shoulder that I am NOT having surgery on in May) started subluxating. In order to transition in and out of bed, and change positions I had to rely on my arms to help me move. I spoke with my shoulder surgeon and he is not surprised as I have multidirectional instability in both shoulders. I imagine we will discuss the next steps when I see him at my pre-op appointment in a couple of weeks.

Once again my quad has begun packing for vacation. I have been religious about squeezing my quad and doing the exercises the therapist gave me in the hospital. I will also use my TENs unit and talk to Cam about other options (that don't override my hip restrictions). It only took 4 days before there was a noticeable decrease in strength. I also went into this surgery with an extremely strong quad (stronger than my later gymnastics days). It's a bit concerning, so we have decided to see a neuromuscular specialist to see if there is anything they can help with. We are in the process of scheduling an initial consult--which will hopefully be before my shoulder surgery in May.

I am getting an electric wheelchair. That should help in my recovery.

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