Last week (tuesday) after 8 years of cort. shots, carpul tunnel surgeries on both hands, ulnar nerve anterior submuscular transposition on my right arm (elbow) and ulnar nerve decompression in my left arm (elbow) and my hands arms not responding to all these treatments, a neurologist ordered MRI's of my neck and arms plus a referral to another specialist. The MRI of my neck has found ground zero of all my arm/hand issues. I have a large tumor in my spinal cord in my neck. It extends from C8 to T1. It has completely filled my internal vertebral cavity at these two vertebra. This tumor also has a possible "tail" extending up to C4. We will not know for sure until the surgeon gets into my spinal cord and sees for sure. It could also be inflammation from the tumor. It is hard to tell from the MRI's.
I have spent the last week really thinking this all through. I have to have this surgery, due to the fact that this tumor will continue to grow and eventually cut off the use of my hands/arms. I have what my hand surgeon calls severe muscle atrophy in my right hand and I have the "someone is hitting my funny bone with a hammer continuously" in my left arm causing constant pain from my elbow to my arm pit. I am ready for this all to go away! It has been a long 8 year struggle.
According to my Neuro-surgeon, this is "very rare". He says that he seens one of these cases about every 10+ years. My Neurologist who found the tumor says that she has never found one and that I am the first. I like to be original but...this is a bit to original for me. LOL
I have been researching this issue for a week now. My neuro-surgeon spent 2.5 hours talking to me about it and the specifics of the surgery. (How often does a Neuro-surgeon who is booked out 2+months, spend 2.5 hours talking to a patient? I was very impressed by this.) I am one of those people who wants to know everything about it. I find it facinating really. I now know exactly how he is going to perform the surgery and remove the tumor by going into the back of my neck, slicing the spinal cord opened and extracting the tumor small pieces at a time to minimize the risk of damaging my spinal cord. I have discussed recovery time and requirements. I feel more comfortable the more I know. It is a way for me to get my mind around the task at hand.
I have had 4 surgeries on both hands and elbows in the last 14 months. These have all been to help me...to correct the issues I have going on in my hands and arms. It has not helped that I also have rheumatoid arthritis, which has slowed my diagnosis process, as I have thought for the logest time, that these symptoms were just my RA. Doctors are not gods. The do the very best they can. I like my primary MD, my rheumatoiogist, my neurologist and my hand/arm surgeon. They can only diagnos the symtoms that I have and start with the most common diagnosis first and then work from there. I don't blame them for not finding this sooner. It was just circumstances.