Wednesday last was a big day. I met Dr. Sdrulla, the neurologist, in the morning and Dr. Ting, the surgeon, in the afternoon. For the purposes of giving each appointment their due, I will concentrate on Dr. Sdrulla's appointment.
Early mornings are challenging for me most days. I know so many who are morning people. If midnight to 2:00 am is morning, then I am definitely a morning person. However, my description here is not typically considered 'morning'. Dragging myself, with the help of Jeff (who also seems to be allergic to morning) to this long awaited appointment was challenging. That being said, it was incredibly worth it.
This appointment had been made more than a month ago, and it marks the first time I have seen a neurologist since my original diagnosis of RSD/CRPS. Based on the information I had all those eleven, almost twelve years ago, I wasn't expecting to have any new answers...no matter how much I wanted answers. Still, I held hope that at some point in the whole process answers would come easily.
Dr. Sdrulla is part of the OHSU campus, and for our visit he had help. We spoke to his intern, Jay, first. I had filled out the complex, multi paged entry form as much as I could, and was pleasantly surprised when Jay, and later Dr. Sdulla, showed they had read the answers I had given. I can't say enough about how that makes one feel. Over the dozen doctors I've seen this year, only half have actually read and showed an interest in the answers I had provided and they had asked for. So right off the bat, I was more at ease and thankful. Jay reviewed my case and asked the right questions. Asked what I had hoped to gain from the visit. Focus still was centered on my RSD, rather than the potential for transferrence due to cancer treatments.
It is the first time I have had my feet tested for temperature difference. These were amazing. Little black strips were placed directly on the top of each foot. This is one of the first things that Dr. Sdrulla did when he came in the room. He left them there throughout the majority of the visit. I was also tested to measure the strength and flexibility of my feet and hands. I was asked how I can walk, so explained the changes I have made to be able to get around. Then, we talked about treatments available for RSD and what therapies had been used in the past.
A few things came out of this visit that were incredibly important to me.
- Even though I don't like the answer, there aren't many different choices for treating RSD since I was diagnosed. I knew of all he mentioned. That being said, physical therapy and psychological help offered in this facility is recommended by him. There are not many new treatments for RSD. The latest research controlled study for one drug showed promise in the small group, but lost all benefit when applied to a larger group. Otherwise, it is nerve blockers, spinal implants, and some pharmaceuticals, and high powered pain killers. Most benefits from these treatments has shown to be effective 20% of the time, for short periods of time. Instead, I am very interested in seeing what physical therapy they recommend now and I will likely see someone to make sure my emotional health is handling the pain aspect of this disease.
- Even though RSD is rare, I seem to have a form that isn't in the norm. I have one portion of my foot, with a sensitive area which connects to a tube like sensitivity that runs from mid foot, the full length of my leg and out through my hip. RSD generally takes the whole appendage; in my case that would be the whole the foot.
- My strength and usage of the foot is only a bit weaker than to the right but movement is inhibited and I have to flex the left foot at a slower pace.
- The left foot, in Celsius, measured 28 degrees and the right measured 32 degrees. This is significant. Dr. Sdrulla said they would normally be concerned if the foot was a mere half a degree different in temperature. He also confirmed that the dry ice burn is a typical sensation and that he has other patients that find warmth helps (rice socks and warm water baths).
Others with non visible chronic issues will identify with how much it means to have that struggle recognized and confirmed. I think it is common for there to be misgivings in patients when one or more of the following things are present. 1) if there is no physical deformity or obvious injury that causes the pain, 2) if it is chronic but can't be charted as consistent hour to hour or day to day, 3) if you are female (please understand there is quite a bit of us who know there is different treatment for men than women), 4) if the care you have gotten is holistic, and 5) if one introduces holistic with conventional treatments.
Truthfully, the care I am receiving in Portland/Vancouver is the first time I have ever found conventional western doctors that are willing to work with holistic practitioners. For this, I am truly grateful.
Along those lines, Dr. Sdrulla said he is more than willing to help us through the next phases of treatment. He is willing to run the chemicals, or treatments, through his data base. This will allow us to chose a treatment that either has minimal impact on RSD, or at least we will have the information on the interactions between RSD and common cancer treatments.
I couldn't ask for more.
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