Well I have yet again let my blog run away from me. See I told you last time this was like the diet thing… where you tell yourself it will start tomorrow and then December 31st rolls around and you still havent started and say what the heck we will start next year. At least this time its only been a week. I will try to get back to my 2-3 posts a week… this is a start. Everything is slow getting back a semi normal state post surgically from the healing itself to getting back to a daily routine- all of it is just snail pase. My last post was on the 11th and I was going through a gastric emptying study that day basically to see if I was getting ill due to gastroparesis (slow emptying of the stomach) caused by the dilaudid that I am on for pain. Several other appointments have taken place in the past week as well. I feel like I still live at the hospital since I was there 3 out of 5 days this past week. It has certainly been a struggle as I have started dealing with meeting new doctors and getting my story to make sense to others. You would think I would be used to this by now, and yes its a bit easier but it never stops being a struggle.
As I am sure many of you noticed my communication has been taking a hit with all that has been happening; everything from my blog to letters to emails, im just slacking in all areas. It is hard to explain to people a situation where I myself have more questions than answers. Its also hard to process any additional information outside of this current issue. If I am in that position then what does that mean for the people that I tell the present predicament to? Do they have more questions for me that I can’t resolve for them? Do they just not understand the situation? Or do they just tell me what they wish would happen and we all move on? I dont know. So I am going to attempt to address the past week.
The stomach study is the easiest to explain. It came back with accelerated gastric emptying, which explains my low blood sugar, fatigue and spells of dizziness. I do not yet know what they are going to attribute this to since I have yet to speak at length with the GI. However this is where that stands, which in a way is good news because it means that the dilaudid is not causing a gastroparesis. Bad news is its completely the opposite of what we assumed. More to come on this after the follow up at the end of the month.
Next up, the first surgeon follow up on the 7th, followed by the EMG on the 8th. These were a while back now, but I was hoping by now (the 21st) I would have a little more supporting information; unfortunately thats not really the case. I have some but not really a substancial amount to make a difference in your understanding of what is going on. Monday the 7th was a pretty normal follow up where we talked about the progress that the right was making and checked out the xrays that were taken that day. The right hip is continuing to heal, although it still has a ways to go. It has a large H.O (heterotopic ossification) that is forming in a pretty troublesome spot where the extra bone growth could cause some major issues with the mechanics of my hip. Because of this, we need to watch the continued healing of my right hip closely so that the H.O does not go so far out of our control that it is hard to take care of whether that is shrinking it, or removing it entirely. An H.O is referring to bone that is forming in soft tissue structures where bone should not exist and depending on location can cause issues to the mechanics of the joint. There are several options to manage this, and treat it but my surgeon and I have not yet decided which option is going to be in my best interest as well as the most effective. Otherwise, the right hip is coming along slowly and at that point in time could take about 40% of my weight through it with tolerable pain. It is far from pain free at this point in time. Another topic addressed was my left hip and limb which is not quite responding well in terms of the neuromuscular rehabilitation. In the middle of the appointment my surgeon ended up walking over to the neurology department and getting an EMG scheduled in for the next day. This is pretty much how my life tends to work; my schedule is made for me medically and I work my social life around that. Its a bit reversed, but the medical events are more common than social so I suppose it makes sense. Although not favorable.
The EMG was done the next day, Tuesday January 8th, at the clinic but the results were not quite what we were hoping for. That night my surgeon emailed me that nothing had changed on the EMG and we were going to have to have a long serious conversation on what this meant for my hip and the expected outcome. Just so that you understand the magnitude of that result, it was instant tears upon reading that email that night and my surgeon and I decided that we would be meeting on Friday (since I was already at the hospital for my gastric study) to discuss this.
Friday could not come soon enough. When events like this happen it becomes very hard for me to get the wheels in my head to stop spinning; they get faster and faster as the days go on and eventually I end up in a mess of thoughts and fears. It often will get to the point where I have so many different things in my head I can not quite seem to form questions or thoughts. When I finally made it to friday (it was only 3 days but it seemed as though it was so much more) I was more than ready to start talking about some of this with my surgeon but I had to wait all day through the gastric study until I was going to get to sit down with him over this one. For those of you who have never been through a gastric study, it is not exactly the most eventful, or distracting of tests. You eat radioactive eggs and toast, which are the objects that they are going to trace through your system, and then over the course of 5 hours they take a 2 minute picture each hour. What do you do inbetween? You guessed it… you sit and wait and entertain yourself… in my case that was thoughts of all the things my surgeon and I needed to address that evening. Thankfully I had a friend with me, who I have found is more similar to myself than I even knew possible. We had quite the day getting to know each other, coloring, and honestly just enjoying the company. Unfortunately the day did not end on a high note.
The evening of the 8th I sat down with my surgeon for a few hours ready to discuss the situation that my left hip was in.
This happened to be on my napkin at lunch one of the days that I met with my surgeon and realized things were going to again go a different direction than I wanted.
It is hard to find the words to explain to you what happened. The results of the EMG were unchanged from 6 months ago, yet we seem to have hit a wall with my left leg about 4 months ago, with no improvement since. There is no sign of improvement, or decline, but thats not exactly good news. It takes a few of the options to try to repair my left leg off the table and leaves us with even fewer options, one of those being saying that this is it, theres nothing else that can be done for that leg. At this point in time I do not have a completely functional quad, it is missing the terminal extension and is very weak, and I have no dorsiflexion (pulling your toes up toward you) with minimal plantar flexion (pointing foot down). In order to work on weight bearing and walking at the moment my left leg is in an AFO and a knee brace that locks my knee back in extension. This is just not ideal, or truly functional, and its a limitation that is impeding both the recovery of the right, and the eventual outcome that we can assume for the future. Put bluntly… walking without crutches, or an assistive device is no longer a guarantee. I couldn’t stop the flood of tears that came next. I cried so hard that I ended up just curled up and shaking, tears streaming, unable to take a enough air in to be able to say anything. This isn’t a time to say it could be worse, its not a time to tell me that new advances could come along, all I needed was someone to just be there with me, someone who understood the emotions that I was going through. I told my surgeon that I didn’t want to give up, I did not want to say we were done, until we had exhausted every option, but I think in reality I did not want to face that we may be out of options. I think my surgeon put it best, this is terrifying, and upsetting for us both because we are reaching an end point long before either of us wants one. There is far more information to gather on this, and to share, I am just not sure how to tell you all at the moment in words written into sentences. Those sentences are just not forming in my head as I still am trying to process everything. I came out of that appointment and cried into the arms of my friend who had come around the corner and immediately knew that nothing had to be said, all I needed was a person to hold me tight and let me know I was not going to be doing this alone. I guess you could see her actions as symbolic of those reaching out to help me right now.
With those developments the week of the 7th, my surgeon decided that we needed to talk with the neurologist who did my EMG and see if she was willing to get involved. He discussed my case from start to finish with her and the problems that we had along the way and those that exist now; to our relief she understood, and started to put some pieces to together. She and my surgeon have begun to put their heads together on what could be causing the dysfunction of my left limb and exploring what options are left or those that we have yet to find. A new pair of eyes will sometimes bring to light some of those options that have eluded us up till now.
This neurologist wanted to see me in clinic and she setup an appointment this past week. I saw her on the 17th, and we went through my case then scheduled a few diagnostic tests. She tested the strength in both legs, proving that the left is considerably weaker than the right even though the right is my most recently operated hip and also showing that I have less control in my left. Response to temperature, pain, and vibration are all decreased in the left compared to the right. She talked to me about how we need to determine if this is a peripheral neuropraxia or if it is a central nervous system issue, which it is presenting more like a CNS issue. There are no conclusions on this yet. She decided that we would re-run the MRI of my brain and spine since it had been a year and she wants to look for any changes. This is being done tomorrow (the 22nd) and then I follow up with her two weeks later. She asked me if I was ready to really aggressively go after this trying to figure out what it was. With walking at stake? Absolutely.
That afternoon I saw my surgeon again to discuss where this was going, and what the neurologist and I had talked about. I kept myself composed and tried to keep my thinking straight forward. However, I left that appointment feeling like I needed to burst. I was (and am) still so confused on everything that is happening, again still in a state where I have more questions than answers. Its hard to even write to all of you on this today.
Came across this one day, and was reminded of something that I often forget.
I didn’t expect to face this much of a struggle after my right hip surgery. I knew it would be hard, but neither my surgeon or I wanted to imagine a worse case scenario with my left, where it lacked any improvement. I often pray that I have help getting through my journey, no matter how hard the struggles are that I face. I have learned not to pray for a specific outcome because my wants are not going to be answered, unless they are the same as my needs. In life we are often given what we need, and not so much what we want. I have found this to be true, and it was a strange coincidence that this was also part of the homily at mass yesterday. My point here is Trust Your Struggle, no matter what it brings. All the events that I outlined above are completely unexpected and undesired but there is a reason behind it. With all I have been through I often lose sight of where I am going and the fact that I need to trust my struggle, trust the journey that I am on. I have my doubts at times, but the important thing is that I never completely lose sight of it.
Now that I’ve completed my “short scattered thought novel” here (i’ve got to write more often to keep the length down), I suppose that I should let you get back to your day. Its actually doubtful that many of you even had time to read this and even if you did I did not really give anything straight forward. I am sure that some of you have many of the same questions as myself with all of this stuff. Just as I am telling myself at the moment, try not to make assumptions and just hang in here with me on this one, and as I figure out how to share things I will. I saw pain management this morning and have another follow up with my surgeon today to continue our discussion in attempts to find the next path we should go down. After waking up around 4:30 am this morning, this definitely feels like a Monday… my hips are going to be so glad to crash tonight!
Upcoming (and a few already happened) Events in my journey:
January 17: New Neurologist (same one who did the EMG)
January 17: Surgeon F/U
January 18: Primary Care (GIM) at hospital
January 21: Pain Management
January 21: Surgeon F/U
January 22: MRI- Brain and Spinal Cord
January 31: GI F/U post Gastric Study
February 4: Neurologist- MRI F/U
February 12: X-Rays and Surgeon F/U
February 18: Pain Management F/U
TBA- (hopefully in Jan) Ultrasound of Hips