Please help....I had TOS surgery last year and am now 10 months post surgery. I suffered damage to my phrenic nerve, long thoracic nerve and intercostal nerves during the surgery. I had a "sniff test" and EMG that confirmed the nerve damage (incomplete long thoracic nerve pattern and no response from the phrenic nerve).

My scapula completely collapsed following the surgery and was winging (worse case my doctors and PT had ever seen). I felt like my chest was being crushed from the intercostal nerve damage. I also spent several months post surgery on oxygen (my O2 was only 78% at one point) but am now off it, as my chest muscles have kicked in to help me breathe. I still have extreme shortness of breathe with any kind of exertion (walking up stairs makes me wheeze so bad and my heart rate goes through the roof). I can no longer lead an active, normal life.

I have consulted with a leading clinic in the US and they said that I have to wait 2 yrs to see if the phrenic nerve will come back. I am devastated, I feel like an old woman and am only young!. 10 months post surgery and no signs of recovery with the phrenic nerve, although the long thoracic nerve has shown signs of repair and my scapula is winging less than initially.

I have several questions I would like help with, if anyone can answer them.

My doctors tell me that as the long thoracic nerve has shown signs of repair (less winging), but that it doesn't look good for the phrenic nerve as there is no evidence to suggest that it is coming back. However, they still agree I have to wait up to 2 yrs until I will know if the phrenic nerve was cut during surgery. They have referred me for cardio-pulmonary therapy for 6 months while I wait. I read that after one year post surgery if there is no response from the phrenic nerve, then the chances of it coming back are slim.

1) Does anyone know what the chances of the phrenic nerve coming back are after one year? I don't want to wait another year from now if I can maybe go to the Mayo Clinic and see if they could help me, if the chances are slim that it will come back after a year. Are there any papers or statistics on the length of recovery time for the phrenic nerve post TOS surgery?

2) Does anyone have any experience with the Mayo Clinic and nerve grafting surgery? Or experience with diaphragm plication?

3) My ob/gyn has told me that it would be too risky to become pregnant (again devastated about that - I am that age!). Has anyone become pregnant while having a phrenic nerve that is damaged?. Are there any high risk doctors (ob/gyn's) that I may turn too. Obviously getting well is my main priority but I do want a family at some point as well. The clock is ticking for me, this surgery could not have gone wrong at a worse time.

I dread waking up every morning to face another day of pain, inability to lead my life as I should be able to and constant doctors and PT appointments.

Any help would be greatly appreciated.

Thank you.