New to group
 

Hi I am new to this group. I have bilateral neurogenic thoracic outlet syndrome. I had symptoms only on one side but the CT showed compression bilaterally. I had surgery on the affected side and am better! I am hoping to prevent the other side from becoming an issue. I was quite sick and had a crazy variety of seemingly unrelated issues that are mostly gone! I hope to learn from you all.

Welcome and congratulations on your surgery success. That's great to hear.

If you don't mind sharing, how long ago did you have the surgery and who was your doctor? Also, how long did you have symptoms before you had surgery?

Take care,
Kelly

same questions as kelly and what kind of surgery didi you have? Thanks JKL

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.

great story-another good rec for dr. donohue!

thank you
 

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.

emcd -- well that's certainly encouraging...thanks for sharing!

I'm really happy for you. I think people may have better outcomes when the monster is tamed quickly. I'm glad the surgery gave you relief.

Kelly