Been to the Best – But, Still No Diagnosis

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Been to the Best – But, Still No Diagnosis

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Kay's Claw Hand

Kay’s Claw Hand

My name is Kay … I’m Glenda’s Mom. I had a car accident back in October 2010, and now have a five-inch plate in my arm that replaced a shattered ulna bone. After surgery, I had a cast put on and after it was removed the fingers on my left-hand had stiffened into a claw position. My surgeon in Fletcher, NC told me he had never seen anything like this in 14 years of practice. He diagnosed it as contractures.

My doctor referred me to a bone specialist in Hendersonville who, in turn, sent me to a hand specialist in Asheville who diagnosed my condition as RSD (Reflex Sympathetic Syndrome). He had me do extensive therapy and splints for several months. In March 2011, he performed a surgical procedure called Passive Manipulation. Unfortunately, I did not get into hand therapy for several days because his hand therapy department was overbooked and had had several emergencies come in. Progress was slow and I later learned that I should have started therapy immediately following the manipulation.

My surgeon and hand specialist also referred me to two neurologists to determine whether I had nerve damage. According to both doctors, no nerve damage was indicated.

Stiffness in all fingers ...

Stiffness in all fingers …

I continued the hand therapy sessions and vigorously did my home exercises. Sadly, both of my occupational therapists (OTs) moved out-of-state and I needed to continue therapy. Medicare will only cover unlimited occupational therapy if in a hospital facility and the only hand OTs available were in a private practice and I had used my Medicare cap. My daughter, Glenda, who lives in the Metro DC Area suggested contacting Johns Hopkins. So, I did. I sent all of my records to their Hand Division and was told by a senior professor that surgery was not indicated, but that I should continue therapy.

On the third OT/CHT visit at Hopkins, my therapist wanted me to be seen by the doctor for a definitive diagnosis and more treatment ideas. After taking four days to look at my medical records for the second time, the doctor said he still feels the same and refused to see me. Meanwhile, we learned that Hopkins is working on a hand transplant. Apparently, that is taking up all of their valuable time, resources, and energy. This is quite disappointing. It appears as though some of these big institutions are more concerned about research that will provide press releases and bring notoriety, thus keeping them in the number one medical institution slot! It’s clearly more about marketing and obtaining research funds than it is about practical healthcare.

These will not straighten out right now ... but, hopefully someday soon!

These will not straighten out right now … but, hopefully someday soon!

After more and more discussions with OTs, we have come to learn that the stiffness after wearing a tight cast isn’t so UNcommon. Also, from these conversations, we learned that the Curtis National Hand Center at Union Memorial Hospital in Baltimore is actually top-rated. So, we went to the best hand specialist facility in the nation and met with a doctor who said it was RSD. He encouraged me to have a nerve block and surgery to repair the tendons in each finger joint. Later, when looking at the doctor’s notes, I noticed that he had backtracked on the RSD diagnosis and said: “although without the pain and skin changes this is a less-likely probability”. So, what the heck does that mean? So here I am, ten months later and NO DIAGNOSIS in a country that supposedly has the best healthcare in the world. I am seriously beginning to doubt how great our healthcare system is in this country.

I went home and researched online both the nerve block and the surgery suggestion from Curtis Hand Clinic and am convinced that neither of them would be very successful. According to patient forums, the people who’ve had these procedures experienced more pain or very-little relief. What’s the point? I am more and more convinced that OT is the way to go, even if the journey is long.

If you are reading this and know of anybody with this problem or have a better suggestion…I am wide open and would love to hear from you.


4 Comments

claudia cooper

November 28, 2011at 10:04 pm

what you have is called an “ulnar claw” it is what happens when the ulnar nerve in your arm becomes damaged. It can be fixed, do more research to find a doctor that will help you. Until then, god bless. CC

    qglenda

    November 29, 2011at 12:51 pm

    Hi Claudia,

    Many, many thanks for sharing that diagnosis with us. My mother (and I) looked it up and will mention the to the folks at NIH, she’s trying to get on a protocol there. She has an appt next week! Considering all the doctor’s she’s seen, it’s amazing to me that nobody ever brought this up to her before. I’m guessing her surgeon didn’t mention it b/c that would be admitting that something didn’t go right. Ugh! His response was that he’s never seen this happen before. Let’s hope we can come to a resolution soon. Again, thank you so much for taking the time to write us a note. I truly appreciate it.

    All the best,
    Glenda

Sophie

January 15, 2012at 8:24 pm

http://www.chirurgiemain.fr/pathologies/maladie-de-la-main/maladie-de-dupuytren/

http://www.wsiat.on.ca/french/mlo/fdupuytren.htm

I’m sorry for the links in french, but I’m french.

http://www.dupuytren-patienteninfo.de/intl/
this one is from germany, but it’s in english.

I was surfing about dupuytren (my father), knuckle pads,Morbus Ledderhose (thas for me!)
and I arrived on your page, I had to say something, I hope the links will help you to see if it’s your case too.

Sophie The French Postie From Scotland

    qglenda

    January 16, 2012at 7:55 am

    Thank you, Sophie! That is really sweet of you. I have forwarded the links to my mother (Kay Nelson), the one with the contractures. I was just talking to some friends this weekend about acupuncture … it’s worth a try!

    I hope you have find something that works for you.

    Again, many thanks for reaching out and sharing some information!

    All the best,
    Glenda

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