Thank you for your detailed response. I have bilateral NTOS and I'm also a patient of Dr. Donahue. Dr. Donahue has recommended surgery for the worse side after PT didn't help and botox resulted in limited, short term relief. Many of my symptoms are similar to those you had, including debilitating headaches and having lost a lot of weight b/c I was unable to chew food for the better part of a year (chewing resulted in painful muscle spasms in my face, now under control with trigger point work). I was evaluated for cancer because I was so skeletal. Before seeing Donahue I was shuffled from one specialist to another for a few years and had endless tests and imaging; not one doc had a clue. I'm in the Boston area and probably saw some of the same docs you went to. I'm on the fence about surgery and it's good to see your report of a positive outcome.
I'm sending you a private message and hope you have time to discuss more.
Quote:
Originally Posted by emcd
Hi Kelly,
I had surgery for NTOS in August 2011 on the left side. First rib and anterior scalene muscle removed. I still have some minor neck issues (which I think was the start of this whole thing) but just in the neck. No longer do I feel like I have been stabbed in the thoracic outlet area with a knife. I had symptoms for 9 months but they rapidly progressed to the point of being unbearable. I had migraines for the first time ever. I had nausea, dizziness, a lot of pain and periodic numbness/tingling in my arm/hand. I lost 30 pounds from not being able to eat. People thought I had cancer as I was so thin. I had palpitations. I saw a Neurologist, Cardiologist, PT, had MRIs of the brain, neck, chest, and a TOS chest CT. I saw Dr. Donahue at MGH in Boston which is where I'm from. I think I am lucky as I didn't have symptoms as long as some people. I had a long recovery process like most. The first week was really painful post op.
Now, I have none of those things. None. It's amazing to look back and think about it as I can't believe how sick I was.
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