I have vascular and neurogenic thoracic outlet syndrome. In January 2008 I had bilateral rib resections following blood clots in the subclavian veins in both arms. Both surgeries went well and the only real complications I had during my 3 week hospital stay was I reclotted in both arms around the stents that were placed in the smashed subclavians and I developed chronic tachycardia right before they put me under anesthesia and have been on beta blockers ever since. Also, during the rib resections, the surgeon had to detach my scalene muscles from the pleura of my lungs. After numerous clot removal procedures, I left the hospital with a clot still in my left arm and no blood flow through the stent. We were letting the collaterals take over and get flow to my left arm which has been happening so far but with lots of pain and only a very small amount of blood flow now through the stent in left arm nearly 1 year later. Now for the respiratory issue. Approx. 4 months following these above sugeries I developed worse tachycardia when lying down and nocturnal dyspnea and daytime SOB. I researched the subject and suspected phrenic nerve damage due to my symptoms. Had all the proper diagnostics done to rule out phrenic nerve damage except for an NCS to check the functioning of the phrenic. I took me several months from the onset of symptoms to even find a pulmonologist who would see me. It took so long for all the tests that months had past and the problem went away on its own and I never received a diagnosis from the pulm doc for cause of nocturnal dyspnea and SOB so I gave up on it and spent the summer gardening. Also, I saw a cardiologistover past few months because of worsening tachycardia when lying down so bad that can't fall asleep. I did every cardiology test out there and was diagnosed with dysautonomia syndrome by my cardiologist. The tachycardia is being treated with Metoprolol but this does not work very well. I have not had nocturnal dyspnea or SOB for all of this summer and this fall. This fall I recently began exercising daily because it helps with pain control and fatigue. I live in Utah and the weather recently became very cold so that I cannot exercise outside anymore but continue to do so indoors using my stairs, excercise ball, etc. Now the nocturnal dyspnea, tachycardia, SOB are worse then ever. 3 out of 4 of the past nights I was awake all night due to the tachyness not letting me fall asleep then within seconds of finally falling asleep have dyspnea so bad I wake up gasping for air. These repeats all night long if I try to fall asleep. I have been forced to sleep propped up on many pillows since the first episode of nocturnal dyspnea in the spring. I also do this because it keeps me from waking up in the am with both arms and both hands numb. I am desperate for answers, can't function without any sleep, sleep deprivation makes symptoms of dysautonomia pure hell and totally disabling. I have a history of asthma but have not used inhalers for many years. I tried inhalers in the spring at my doctor's request and they didn't change the nocturnal dyspnea at all. In addition, all of my pulmonary function tests done in the spring were normal including the breathing test done while I was supine. However, the lab did not have me sleep while doing the test. I saw a neurologist a couple of weeks ago who suggested I stop my pain meds, Oxycontin and Ultram, due to the fact that they can worsen dysautonomia. I had been asking all doctors that I saw if the Oxycontin or Ultram or any of my medications could be causing my tachycardia and dyspnea and they all said no!! I began tapering off of Oxycontin this week but my symptoms started prior to that. I was supposed to wait until after I returned home from a trip to Calif. over the holidays and then begin tapering but couldn't even go on the trip because I am so sick from the tachycarda, nocturnal dyspnea, chest pain that radiates into front of neck and throat, sleep deprivation, etc. I have had chest pain ever since before my TOS surgeries but it does get worse when other symptoms are also worse. I also have history of hypothyroidism for which I take Armour thyroid daily. Approximately 1 1/2 years ago I became hyperthyroid due to my medication dose and had all sorts of symptoms. I have also had some of the same symptoms the past couple of weeks along with the respiratory symptoms. My husband and I think that my dysautonomia and my circulation issues due to the clot in left arm are what is causing the tachycardia. We are not sure about the dyspnea, SOB that followed but maybe it is due to the pleura of my lungs being detached from scalenes during surgery which later could cause scar tissue on my lungs? Or is it maybe due to anatomical changes in my chest/rib area after these surgeries? My friend is a respiratory therapist said my thyroid could also make the tachyness worse at night when I try to fall asleep. I called all of my specialists today, cardio, pulm, neuro. Everybody is gone on vacation for the holidays and won't return till first part of Jan. Pulm doc won't give me an appt. till Feb. I made an appt. with my primary's PA for tomorrow to at least get a thyroid blood test and ask for help with referring me to a different pulmonologist. Any ideas on answers to the above questions regarding the tachycardia and especially the nocturnal dyspnea would be very helpful. I am getting close to taking my trip to Calif. this Saturday and when I get there go to an emergency room in San Diego or Riverside or LA and ask for a pulmonologist to see me because I am not getting any help where I live and have been through the same scenario before which ended up with no diagnosis and no treatment!! I was told by the assistant surgeon who worked on me that National Jewish hospital has the best pulmonary docs in the US so maybe if one of them can answer my questions that would help. I would just go to that hospital for help but my state health insurance does not cover treatment out of state unless it is an emergency. I had to drive to Denver this past January, go to the ER the night that a vascular surgeon who is an expert in TOS was on call, and get admitted before I could get appropriate treatment for the TOS. This was after going to the ER in Utah and seeing vascular doctors in Utah who only damaged my left arm further and missed the clot on my right arm until I pointed it out to them! I have had really crazy scarry year! Thank you in advance for ANY help you can provide.
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