My 17 year old daughter was recently diagnosed with NF1. Her complications are: Chiari Malformation, c4~7 Buldging discs, scoliosis, and 2 9 mm Thalimus tumors. We have recently been to the ER for extreme swelling in her right arm. They did an ultrasound and found no clots. She has always has swelling and extreme pain in the right wrist as well as the arm and shoulder. Do you think the Chiari is causing the swelling or could it be the bulding discs causing her pain and swelling? She also suffers from such severe leg and hip pain as well as severe headaches. We recently went to see a genetic doc in Los Angeles and she has referred us on to a Neuro surgeon for further evaluation. Thank you so very much in advance for any insights you can offer.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.
Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
It depends on where the pain and numbness is. There is a cause of numbness of the index finger and middle finger called carpal tunnel syndrome. It usually also has sensory changes of the palm at the thumb, index and middle fingers, and the ring finger on the side near the middle finger. I am not sure if you have these other features or not, but I will elaborate on this.
Carpal tunnel syndrome is a compression/entrapment syndrome of the median nerve at the wrist. It usually results from excessive use of hands and occupational “microtrauma”. Other causes include hypothyroidism, amylodosis, and arthritis to name a few. It may also arise during pregnancy and resolve after delivery of the child. The sensory changes usually are worse at night. Patients may complain of having to shake their hand to wake it up. Over time, you may develop atrophy of muscles of the thumb supplied by the median nerve.
I would recommend that you follow up with your local neurologist. He/she will perform a specific neurological examination focused on the median nerve. The neurologist may also elect to perform an EMG/NCS to evaluate the motor and sensory components of the median nerve as it crosses the wrist.
Initial treatment includes splinting of the wrist, which can be purchased at local drug stores. If no contraindication NSAIDs such as ibuprofen can be used to treat the pain of carpal tunnel. If indicated, surgical release of the carpal ligament at the wrist is often performed.
Again, I would follow up with your local physician/neurologist to discuss further.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.