OpenHealth Q&A

The Concerns Surrounding Clots in the Subclavian Veins

I am a 37-year-old female, standing at 5 feet 8 inches and weighing 140 pounds. I have a history of anemia, do not take birth control, and I neither smoke nor consume alcohol. Additionally, I am not currently on any anticoagulant medications, which will be significant later. Four months ago, I underwent a reverse shoulder replacement on my left shoulder. On February 13th, I experienced a sudden change in my left arm; it became purple, cold, and prompted my orthopedic surgeon to send me to the emergency room. While the ER did not conduct any blood tests, they performed an X-ray, ultrasound, and four CT scans (two with and two without contrast). Their conclusion was that I had developed an axillary arteriovenous (AV) fistula and subsequently referred me to a vascular surgeon. My arm remained cold and purple, with weak or occasionally absent pulses. When I inquired about the potential risks of blood clots or tissue death, I was reassured that there was no immediate concern, as I still had some blood flow. They advised me to maintain a position that would optimize circulation and limit my activity. During my visit to the vascular surgeon's office, more diagnostics were performed. The outcome indicated that I did not have a fistula, but rather vascular compression attributed to thoracic outlet syndrome (TOS). The surgeon mentioned the necessity of rib resection; however, their practice does not perform that type of surgery, so I was referred to a cardiothoracic surgeon. I raised the issue again regarding the risks of clots or tissue death, and yet again, the response was that there was no need for concern. I attended my appointment with the cardiothoracic surgeon today, and my arm continued to appear purple, cold, with inconsistent blood flow. He emphasized that due to the alarming symptoms in my arm, further testing was essential to eliminate other potential problems. He explained that TOS is often diagnosed by excluding other conditions. To my astonishment, he revealed that I had blood clots in both of my subclavian veins, with the left vein showing more severe narrowing to less than 3mm. Upon asking me which blood thinner I was taking, I was taken aback—having never been informed about the existence of any blood clots, let alone the need for anticoagulation therapy. The cardiothoracic surgeon expressed disbelief that the vascular office had overlooked this critical issue and mentioned he would refer me back to them for further action. I am deeply concerned that I was never informed about the presence of blood clots, especially given the drastic changes in my arm’s color and temperature, along with documented circulation issues. It feels as though I am being passed around among specialists without any significant intervention until something potentially disastrous occurs. Is this experience typical for individuals diagnosed with subclavian vein thrombosis? I have the strong impression that there has been a serious failure in communication and care throughout this situation, and I am uncertain whether my concerns are valid in light of what has occurred.

Answers (1)

3/4/2026, 4:20:43 AM

OpenHealth AI

I understand your concerns regarding the serious issues you've experienced with your arm, especially the discovery of blood clots and the seeming delays in addressing your symptoms. Let’s break down the situation and outline some steps you can take moving forward.

Main Points:

• You have been diagnosed with blood clots in both subclavian veins, which indicates a significant issue needing attention.
• The change in your arm's color, temperature, and pulse should be taken seriously, and timely communication with healthcare providers is crucial.
• Your concerns about the previous evaluations and the transition among specialists are valid, given the importance of addressing vascular issues effectively.

Explanation:

Subclavian vein thrombosis can occur for various reasons, often tied to compression or anatomical variations, as seen in thoracic outlet syndrome (TOS). It is concerning that your symptoms (coldness, discoloration, and weak pulses) were not adequately addressed in earlier assessments. Blood clots can pose risks of complications like embolism and tissue death, especially when they affect blood circulation significantly.

In your case, prompt management of the clots through anticoagulation therapy may be necessary to prevent further complications. Your situation reflects a gap in communication among care providers, which you rightly identify as problematic in managing a critical condition like yours.

Next Steps:

1. Anticoagulation Therapy: Discuss the initiation of anticoagulant medication with your cardiothoracic surgeon or vascular surgeon immediately. This is crucial to manage the blood clots and mitigate risks.

2. Follow-Up Appointments: Schedule regular follow-up visits with the cardiothoracic surgeon to monitor the status of your veins and adjust treatment as needed.

3. Mobility and Positioning: Continue to follow recommendations regarding limb positioning and movement to optimize circulation while avoiding behaviors that could exacerbate your situation.

4. Open Communication with Healthcare Providers: Clearly express your concerns about past evaluations and ensure that all your symptoms are addressed moving forward. You have the right to understand your condition fully and make informed decisions.

5. Seek a Second Opinion: If you feel that your concerns are not being taken seriously, consider seeking a second opinion from another vascular surgery specialist to ensure you receive comprehensive care.

6. Monitor Symptoms: Keep a detailed log of your symptoms, including any changes in color, temperature, or sensation in your arm. This information can be invaluable for your healthcare team.

I understand this is a distressing situation, and it is essential you feel heard and supported. Your concerns are valid, and communicating them effectively with your healthcare providers is key to receiving the care you need.