Doing Homework Restores Some Hope

In 1996, I lost part of my thumb because it had become gangrenous from severe Raynaud's. I had a non healing sore for months and unfortunately, it was too late before I found an orthopedic surgeon who diagnosed it and expedited the treatment through the VA in Madison Wisconsin. A surgery called a digital sympathectomy was performed on my right hand. An incision was made across the lifeline of my hand. Microscopically, the sympathetic nerve tissue surrounding the arteries in my hand was removed. Immediately, blood flow was restored to my thumb. What was left of my thumb quickly regenerated over the next few weeks while in a cast. (A sympathectomy does not produce permanent results. The muscle tissue grows back.)

Once the cast was removed, I was introduced to Occupational Therapy. I was only 2 years into my diagnosis and so much was going on, I had no idea there was a specialty in the recovery of my hands. Before the worst happened, I had only been given a leaflet on hand stretches to prevent contractures, but that was it. It turned out my OT was one of my biggest allies in keeping my hands moving for almost 3 years.
She used paraffin, connective tissue massage, passive range of motion and something called joint mobes. I forgot what it is short for but basically the OT stabilizes the finger on both sides of the joint and moves it back and forth (It's not that simple and don't let anyone try this on you who is NOT an Occupational Therapist. I have had chiropractors attempt this after I moved to California. Do not let them unless they are a licensed Occupational Therapist as well.)

Long story short, after moving to California, and thanks to some cuts in the VA after 2001, my new OT determined the treatment done by my OT authorized by the VA in Wisconsin would no longer be authorized by the VA due to cuts in funding. I was told by my new OT in CA that the VA could not justify ongoing treatment. About 2 years later, despite splinting and exercising, my fingers contracted severely and continue to be 8 years later. (pictures posted on Face Book)
Back to my homework... Yesterday, I had an appointment with Physical Rehab Medicine at the VA to specifically address the study I referenced in my July 16th blog from Current Opinion in Rheumatology: Musculoskeletal Rehabilitation in the Person with Scleroderma. I got to my appointment and realized I did not have the study with me, so I referred the doctor to my blog where she printed a copy of the study and presented it to the attending physician. After a 10 minute wait that seemed like forever, the doctor came back in and set me up with OT for 9 weeks twice a week for connective tissue massage, joint mobes and paraffin for my hands. I will just quote the study, “except for splints, these studies show improvement in joint motion, hand function and cardiopulmonary endurance (Poole, 2010).”

The doctor congratulated me for doing my homework to get what I needed. She had a very positive outlook about it. One of the best parts is, the OT that told me those treatments would not work, was going to be the one administering the ordered treatment. I really liked her personally, but I do like it when I am proven right. (I’ll try not to gloat!)

Now, because things went my way, this does not mean I expect to have full use of my hands in 9 weeks. That’s just unrealistic. Worst case is the treatment stops in 9 weeks, and then I become eligible again for another round the following year. 9 weeks twice a week is quite a commitment, and with some progress will make my home program more effective.

My treatment starts August 6th. Needless to say I am very excited and I will keep everyone posted on my progress.
And new, some unsolicited advice:

I have been told so many things over the years. A long time ago, someone gave me Echinacea. They thought they were being helpful because it would help my immune system. It helped it alright; it helped it cause a flare up because I have an autoimmune disease. I take medication to suppress my immune system. I didn’t realize boosting my immune system could cause a flare up. Don’t be afraid to bring in studies for your doctor or medical team when their treatment ideas do not meet with yours. Keep in mind this information cannot just come from anyone. Now, you can’t just bring in any study or opinion. You need to be sure the studies or clinical trials have been conducted ethically and that they meet criteria for reputable research. I have posted links below explaining criteria for a reputable study. By all means find other links, but be weary of links related to selling what is used in the study. That’s a HUGE conflict of interest. Do not let a practitioner, blogger, friend, or anyone try anything on you that you feel uncomfortable with or sounds too good to be true. My favorites are friends and family who tell you something "They" say will help you. My favorite question is, "Who are THEY? and can THEY provide any proof." I make fun of it, but loved ones mean well and only want to help. You don't have to be mean about it. I usually thank people and do my own research. If you find a study that shows results you are looking for, make sure it meets protocol and criteria. There are no miracle cures. DO YOUR HOMEWORK.


http://www.medscape.com/viewarticle/717087_7
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=402
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1089058/
http://clinicalstudies.info.nih.gov/what_is_study.html