I apologize I have not updated my blog in the last week. This past week has been a challenging one. I would also like recognize that I promised my next blog to contain pictures and a detailed description of my surgery. I am presently working on the surgical photographs because I want them to be as detailed as possible for you. So, I promise my next blog post will be very graphic.
As my regular readers will know I injured my right knee about three weeks ago now when I attempted to use the walker for the first time. Since then I have stayed off my leg until this week as I thought I would at least give standing a try. I attempted to stand for 30 minute intervals on Tuesday and then twice on Wednesday. Unfortunately, even weight-bearing through standing resulted in a highly dysreflexic response.
For those readers that do not have spinal cord injuries, autonomic dysreflexia is a potentially life-threatening condition that most often occurs in spinal cord injury patients. Autonomic dysreflexia is a reaction of the autonomic nervous system to overstimulation and is characterized by episodic high blood pressure associated with a whole host of symptoms. Some of these symptoms include flush skin, headaches, increased neuropathic pain, and sweating above the level of injury to name a few. Most SCI patients experience dysreflexic episodes differently, but usually have at least one of the following above symptoms. Autonomic dysreflexia is believed to be triggered by afferent stimuli (nerve signals that send messages back to the spinal cord and brain) which originate below the level of the spinal cord lesion.
Neurologically, it is very interesting what is happening to me at the moment. My right knee is still quite swollen and I have discovered my knee is injured towards the outside of my leg. We came to this conclusion because when we put pressure on a specific spot on my knee my body goes into an involuntary muscle spasm, my neuropathic pain congregates to a specific area on my knee, I get goose bumps all over my body and I start perspiring on one half my face. Most of these reactions are my particular response to autonomic dysreflexia when my body is in pain. What is most interesting is that I could keep touching the same spot on the knee and continue to spasm each and every time I touched that particular spot. This response indicates to me that there may be some sort of neurological response going on.
After my surgery my surgeons told me that my spinal cord was now beating to the pulse of my heart as it was literally stuck in place before due to the multiple cysts in my spine. With that said, it has only been about six weeks since my spinal surgery, so who knows what is waking up in my body. Only time and hard work will tell.
Needless-to-say it is been a very challenging week with respect to my pain levels, which have been off the charts 😦 Unfortunately, after two days of standing my knee is once again swollen and I am down for the count. I have an MRI scheduled on Monday morning to see if I have done more damage than I’m aware of.
In the meantime, I continue upper body workouts. I am working on strengthening my neck and back muscles, which are getting better, but still pretty sore from the surgery.
To call this frustrating is, I’m sure, an understatement, but by now I’m sure you are used to two steps forward, one step back (steps being hopefully the right metaphor!). The bad news seems to include some potentially good news inside it, too. Here’s hoping the MRI doesn’t show anything too bad. Thinking of you and rooting for you in DC!
Thank for your strength and courage not only for what you are humanly going through but to be able to recapture all of in detail for all of us to share .. you are so awesome. You may not realize this but you are also helping me cope with my husband’s situation. It is much more medically complicated then your situation and with the good Grace of God, his stubbornness and all the miracle workers at Berkshire Medical Hospital, MA he is still alive today.
Our Kinderhook Bookstore,after 23 years of business is closing June 30, 2013 and I found an amazing book by accident which I hope you get the opportunity to also read: “End Back Pain Forever,: by Norman J.Marcus, MD. No it will not cure my husband’s quadriplegic paralysis at this point in time but I am getting a better understanding where back pain cure should and must be heading and it is definitely not surgery for the most part!
I sincerely hope that with all you are enduring and documenting that you can and will bring this insight back to the states and present your findings to Congress before the next presidential election so major positive changes can begin in the spinal cord field of recovery. Because I can tell you first hand that the rehabilitation for persons with full paralysis is piss poor appalling below bear minimum for any type of full recovery. Having a human being just lie on their back day in day out without any type of moment only just to wipe their feces and to wash them up is SO DAMN INHUMANE….and this my friend Ali is the physical state of my husband. Google on facebook my name, Caroline Hall and you will see my few pictures of my husband, our daughter, Monica Rose Hall and my husband Joesph James Hall.
I do not know where our journeys will end but I do know there will come positive change from this journey. That I do know.
Ali, along the lines of what Caroline wrote above, as frustrating as your ups and downs may be, you are doing valuable work through your blog posts, educating many of us on the incredible, enduring challenges people with your injuries face. Your knowledge of the advantages and disadvantages of such different healthcare environments from a patient perspective is important for us and others to hear. While we all wish it were easier for you there, the story you’re telling is unique. When you return, should you be interested in telling that story for the purposes of legislative advocacy, you’d be great at it.
Wishing for a good MRI!!!!! Miss you, Ali! And I’m so glad to see that you are inspiring people through this blog!
Thinking of you Ali and hoping your MRI results are okay. xxx Tania.
I crossed all my fingers, that you have not so much damage! Thinking of you and looking forward, that I can see you again in August 🙂