I hope someone can help shed some light on this for me. I'm a 33 year old female with a history of chronic migraines/ headaches on the left side only. This past Feb I had an MRI done with the suggestion of an orthopedic thinking I may have a pinched nerve in my neck with the pain I was describing to him that occurs before and during my migraines. I also had rotator cuff surgery in sep of 2010 and was actually seeing him as a follow up months later. I thought that perhaps my shoulder issues were the cause of the neck and head pain I was getting on the same side (left) but as my shoulder itself felt better and got stronger, the neck and head pain on the left side continued. When the MRI was done, everything seemed normal except a small mass was found in the area of my carotid artery/ behind my clavicle bone not far from the aortic arch.
Since Feb of 2011 I have seen a thoracic surgeon who ordered multiple tests to try to determine what exactly the mass is. He said it is the size of a pea, maybe a little smaller. I have had a cat scan, more mirs with contrast and a biopsy that found the mass benign and a cathetirization test that determined the mass is not vascular.
I have been in the ER multiple times from pain in my clavicle that goes up the side of my neck (mainly the front) goes behind my left ear and into my left temple/eye causing the migraines. I also get pain in my left ear and jaw. and a feeling when I move my head on the left side that sounds and feels almost like a pinching. Now, I have seen a pretty highly regarded surgeon in my area, the same one since the mass was found. After all these tests, and sitting in his office describing the pain and headaches I get only on the left side where this tumor is also located. He thinks that the mass is too small to be causing all this and he feels that surgery to remove it would be much too risky on the chance that it isn't this small mass causing all this pain and headaches. I get the pain everyday and migraines sometimes 3 to 4 times a week. ONLY on the left side. I feel like I have spent all these months with him only for him to tell me he doesnt know if the two can be connected or not. He sent me to another neurologist ( I have seen very many over the years and tried various medications). The neurologist said that he cannot say for certain whether or not the mass and pain/headaches are related but since I have no quality of life anymore, he wanted to try to "block" the pain with amitriptoline. Well, I have been on it for 2 weeks and the side effects were so bad that I called his office and told him how bad they were and he just said to stop it without any further suggestions. So, now I am back at square one. I remain a "puzzle" in his words because where my tumor is located is pretty rare and this thoracic surgeon didn't want to risk it. I have an appointment next week with another highly regarded thoracic surgeon for a second opinion. I have spent many hours on the web hoping to find someone else who has had any similar experiences but so far I havent found much. The thoracic surgeons suggestion that I have been seeing was to just try to treat the pain with pain blockers and monitor the mass to see if it grows. But, in the meantime, I am still in constant pain on the left side of my neck and head and have lost everything because of it, including my job. If anyone out there has had any similar experiences or anything they can add that would help me, I greatly appreciate it. I don't want to have surgery, but if this small mass IS the cause of all my problems then I will surely want to have it regardless of the risks. Thanks in advance.
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