Restenosing again: a cautionary and hopeful tale
Posted: Sat Oct 09, 2010 5:40 am
From my blog: www.myliberationadventure.blogspot.com.
What a difference a week makes. Was it really just last Tuesday when I was walking around the mall like I owned the place? Yes, it was.
I am very bummed to report that this week has not been nearly as wonderful as the last. I fell on Sunday. I'm fine, but I wish the circumstances were more impressive than reality. I was not doing cartwheels, or dancing. I was making a damn bed. My left toe caught on what must have been a huge dust bunny, and I hit the floor. My elbow is a lovely shade of purple, and my hip and ego are also slightly bruised.
I saw my new PT on Monday and told her what happened. Neither of us thought it was too concerning, and I had a good workout.
Then it happened again on Wednesday. I stepped off of the elevator in the lobby of an office building, with cane in hand, and I caught that damned toe again. Splat! I'm still fine, but it appears that the writing is on the wall. I am restenosing.
If this is anything like the first time, it will be a slow process. Although I improved dramatically in the 24 hours after my treatment, the decline takes much longer. It has been fun while this treatment lasted. Two months definitely beats two weeks, but two years would have been even better!
I am in touch with Dr. Haskal's office, and his staff is amazing. He is out of the country this week, but I will see him for my three month follow up at the end of October. I hope he will be able to fix me not long after that. Hopes and reality don't always match up, but I'm still a hard-core optimist, so I am confident that where there's a will, there's a way.
May I climb up on my soapbox for just a second? I am the perfect example of why it is so important to stay as local as possible when choosing a doctor. I know that it is not realistic for everyone, especially all of you Canadians out there. I hope that changes soon.
It is also essential to have doctors and therapists document changes post-procedure. I have my neurologist's report showing my improvement in EDSS from 6 to 3.5 two weeks after the procedure. I also have my PT's evaluations from baseline, at one month, and two months. This is all objective evidence of the success of my procedure.
I can also tell you that fatigue is not an issue, swallowing is still excellent, and my thinking is still sharp. Those are my personal observations. No doubting neurologist is going to be swayed by any of that. They want objective data from reliable sources? I've got it!
I am going to get an AFO to support my left foot so that I don't fall again and risk doing real damage to myself. My nurse, PT and I are confident that this is just a temporary fix for a temporary problem. Once my jugulars are wide open again, I fully expect that I will only find myself down on the floor if I choose to be there. Perhaps I will check under the bed for that mean old dust bunny that tripped me up on Sunday!
The bottom line is that it is all going to be fine. I knew that restenosis was a real possibility. It happened. Oh, well. I am extremely lucky to have a fabulous doctor who, when he is able, will make it all better again. Hopefully next time it will last a lot longer. We shall see...
What a difference a week makes. Was it really just last Tuesday when I was walking around the mall like I owned the place? Yes, it was.
I am very bummed to report that this week has not been nearly as wonderful as the last. I fell on Sunday. I'm fine, but I wish the circumstances were more impressive than reality. I was not doing cartwheels, or dancing. I was making a damn bed. My left toe caught on what must have been a huge dust bunny, and I hit the floor. My elbow is a lovely shade of purple, and my hip and ego are also slightly bruised.
I saw my new PT on Monday and told her what happened. Neither of us thought it was too concerning, and I had a good workout.
Then it happened again on Wednesday. I stepped off of the elevator in the lobby of an office building, with cane in hand, and I caught that damned toe again. Splat! I'm still fine, but it appears that the writing is on the wall. I am restenosing.
If this is anything like the first time, it will be a slow process. Although I improved dramatically in the 24 hours after my treatment, the decline takes much longer. It has been fun while this treatment lasted. Two months definitely beats two weeks, but two years would have been even better!
I am in touch with Dr. Haskal's office, and his staff is amazing. He is out of the country this week, but I will see him for my three month follow up at the end of October. I hope he will be able to fix me not long after that. Hopes and reality don't always match up, but I'm still a hard-core optimist, so I am confident that where there's a will, there's a way.
May I climb up on my soapbox for just a second? I am the perfect example of why it is so important to stay as local as possible when choosing a doctor. I know that it is not realistic for everyone, especially all of you Canadians out there. I hope that changes soon.
It is also essential to have doctors and therapists document changes post-procedure. I have my neurologist's report showing my improvement in EDSS from 6 to 3.5 two weeks after the procedure. I also have my PT's evaluations from baseline, at one month, and two months. This is all objective evidence of the success of my procedure.
I can also tell you that fatigue is not an issue, swallowing is still excellent, and my thinking is still sharp. Those are my personal observations. No doubting neurologist is going to be swayed by any of that. They want objective data from reliable sources? I've got it!
I am going to get an AFO to support my left foot so that I don't fall again and risk doing real damage to myself. My nurse, PT and I are confident that this is just a temporary fix for a temporary problem. Once my jugulars are wide open again, I fully expect that I will only find myself down on the floor if I choose to be there. Perhaps I will check under the bed for that mean old dust bunny that tripped me up on Sunday!
The bottom line is that it is all going to be fine. I knew that restenosis was a real possibility. It happened. Oh, well. I am extremely lucky to have a fabulous doctor who, when he is able, will make it all better again. Hopefully next time it will last a lot longer. We shall see...
