Gobble Gobble

To get up in the morning only to know that you have to face another obstacle takes strength. To smile when the only thing you can do is cry takes bravery. To act happy and laugh when you know that times are at their worst takes courage. To be joyous when the only good news is the best of the bad news takes support. 

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My day from hell is over (thank GOD)...but it started off about as badly as it possibly could. My first task of the day was my Theology group presentation at 8am. Well ...I woke up at 8am and the only reason I woke up was because my dad came into my room to see why my car was still in the driveway. I live about an hour away and there was no way I was making that class. My alarm either didn't go off, or I slept through it (which doesn't usually happen--especially when I have something important to do). I still feel terrible for leaving my group to do my part...with no explanation as to why I was not there (which wasn't even a good reason). I guess it happens and there isn't anything I can do to change it. I spoke with my professor who was so nice, and he said that my group did a fantastic job. He told me no one would have even known that there was a problem, and that he could see that I was one of the authoritative members in the group--my leadership from our group meetings was evident in their ability to stay organized. He even said that the presentation was one of the best he's experienced in several semesters. Phew!

The rest of the day went pretty smoothly. I had 3 papers due and a spanish presentation and all went according to plan (unlike my morning).

So my day from hell is over and I am officially on Thanksgiving Break!

I believe I owe everyone an update as to how I have been doing over the last week and a half. I apologize again for not updating sooner. I have had no time to do anything but go to class and work on school assignments.

Head:
My head is getting significantly worse (all of my symptoms). My neck is also more painful and I am having a difficult time focusing. Unfortunately my appointment in Boston wasn't as conclusive as I would have liked. The doctor doesn't "accept" Chiari 0 and therefore he doesn't believe 3mm of a herniation is significant. Chiari 0 is a debatable problem in the world of neurosurgery. Some specialists feel that when the patient presents with the neurological symptoms of Chiari Type 1 (which is classified as 5mm herniation or greater) the level of herniation is not significant. Meaning that patients with neurological symptoms and Chiari 0 should be considered for the same treatment as patients with Type 1. However, maybe seeing a specialist who doesn't believe 3mm is significant is a good thing. This will lead me down a more conservative route, rather than if I had seen a specialist who believes that 3mm is signficant. I likely would have been told that I would do well with decompression surgery--something I definitely want to avoid at all costs.

I am currently looking into craniocervical manipulations by a specialist that Dr. Shiple recommended. There have been studies that show that patients with Chiari 0 respond well to these manipulations and in some cases the herniation level has improved. If these manipulations don't work, I will look into the Driscoll Theory as an alternative. For more information on the Driscoll Theory--click here--below is a video of Dr. Diana explaining the Driscoll Theory and why it may be helpful for EDS sufferers--Dr. D has EDS herself (as well as Dysautonomia).

Knees:

My knees are not doing too well. My left knee just hurts. It is supposed to be my supporting leg and it really isn't living up to it's responsibilities (just as I unfortunately failed to live up to my responsibility to my group for my presentation today...still beating myself up over it). The pain is localized to my patellar tendon which is good and bad. Good news is the pain is not related to my past surgeries. Bad news is it is likely tendonitis which I am pretty much stuck with. Hopefully more strength in my legs, and an even gait (after my ankle and right knee are reconstructed) will help take some of the load off of my left knee. My right knee is hanging in there (literally) but I can feel it grinding when I go through flexion. Surgery cannot come soon enough. I am so ready to put this leg behind me. I will be having two different procedures on the right knee (although combined in one surgery)--MPFL reconstruction with cadaver tendon (same procedure as left knee) and a TTT Osteotomy (Tibial Tubercle Transfer). I will post at a later date about what a TTT Osteotomy is and what the expected recovery time is.

*My RPAO screws will be removed during one of my two December surgeries. I am excited for them to come out because at the moment I cannot wear jeans. The waistband of jeans sits directly over my screws (which I can feel) and it pinches and is very uncomfortable and painful at times. 

Ankle:

My right ankle has been bothering me lately. It is getting significantly weaker due to lack of use and immobilization. However, there really isn't anything I can do until surgery in a couple of weeks. As I have mentioned in previous posts I am having the Chrisman Snook procedure with cadaver tendon (allograft) in December. 

Shoulders:

I had a scare with my left shoulder last week. For some reason I woke up and had sharp, shooting pains down my arm into my elbow. No dislocations...just pain. However, the pain only lasted about 2 days and now it is back to functioning well and is stable. Key word/most important word is STABLE! My right shoulder is currently in the joint. I spent 6 weeks in a pillow sling. I am fortunate that it stayed in place after ditching the sling. Another dislocation to the right shoulder will likely result in more nerve damage and well....it just wouldn't be good. I do not know if my shoulder will be able to support me on crutches this December. I will use my wheelchair immediately post-op and until I return for the spring semester. I will then use my crutches for school for as long as my shoulder will allow me to. The wheelchair lift was installed a month ago and is ready to use if necessary. 

Back:

I am back to using a heating pad which I really shouldn't do. This past summer I developed Toasted Skin Syndrome (as funny as that sounds) from the heating pad. This time around I make sure that I use the low level of heat and it only stays on for 2 hours. Unfortunately my back pain is horrible and I really can't sleep without heat...at least to fall asleep. I use thermacare wraps during the day but they are not hot enough and are uncomfortable at times because I have to wrap them around my stomach. 

CRPS/Neurontin

I have been taking 2400mg of Neurontin everyday for about 2 1/2 weeks now. My CRPS pain is finally back under control. However, unfortunately it was brought to my attention that Neurontin is likely the cause of my memory issues. I spoke with Dr. Shiple and I will start weening myself off Neurontin and will start taking Lyrica instead. 

The most important update is that the Bruins have won the last 8 games in a row and will hopefully add to that run tonight when they play "them"-- GO B's! I am looking forward to going to the Thanksgiving Showdown game at the Garden on Friday with my cousin (Bruins vs Red Wings)!

**"Them" = Canandiens**

I hope everyone has a wonderful Thanksgiving! I am looking forward to spending time with my family.