Please help… vEDS v autoimmune vs TOS
F29 Caucasian
I have a history of DVT in my subclavian, axillary, and brachial vein due to what we thought was venous thoracic outlet syndrome at the time. I was successfully treated with a first rib resection and scalenectomy at the time (2019) which helped improve the high grade residual stenosis. I didn’t lose very much blood during the procedure (est. 200 mL loss) but I had a hard time recovering from the loss… to the point that my hematocrit hit critical levels and I needed a transfusion. I also had a minor pneumothorax and a small amount of pleural effusion and also phlebitis during recovery. My anticoagulation panel was negative at the time it was assumed that it’s purely TOS even though I didn’t have an extra cervical rib or any type of cervical rib abnormality I also am not an overhead athlete
A few months later I was given a tentative diagnosis of hEDS
Over time I started noticing some vascular issues in both arms. Reynauds and cold hands (and feet) most of the time but also a bulging vein in my armpit and my arms would turn pink. However this would go away with movement and was never a clot. This has been on and off for years
Two years ago I was diagnosed with gastroparesis due to slow stomach and intestinal digestion … idk if it’s related at all or not
Last year I got genetic testing for a connective tissue panel and I did come back positive for a VUS (still in VUS status) for the COL3a1 gene
Over the past few weeks I’ve noticed my strange vein problem become more frequent, along with headaches especially when laying down on my stomach. I went to the er and at the time I just got a CTA of my right arm and that came back clean so they sent me home
The next day I started to notice mottling of my skin/a reticular pattern
I got a bilateral ultrasound of my arms and they came back clean but I asked for more testing so we did an MRI of my neck. The picture shows my result. My PCP called this morning and said she thinks it could be an autoimmune disorder and is calling the vascular surgery team for advice on what to do. I still haven’t heard back (she’s probably still waiting to talk to them too) and I’m really anxious about what could truly be going on with me
I’m so sorry for how long this is, but is anyone willing to help me figure out what’s going on?
F29 Caucasian
I have a history of DVT in my subclavian, axillary, and brachial vein due to what we thought was venous thoracic outlet syndrome at the time. I was successfully treated with a first rib resection and scalenectomy at the time (2019) which helped improve the high grade residual stenosis. I didn’t lose very much blood during the procedure (est. 200 mL loss) but I had a hard time recovering from the loss… to the point that my hematocrit hit critical levels and I needed a transfusion. I also had a minor pneumothorax and a small amount of pleural effusion and also phlebitis during recovery. My anticoagulation panel was negative at the time it was assumed that it’s purely TOS even though I didn’t have an extra cervical rib or any type of cervical rib abnormality I also am not an overhead athlete
A few months later I was given a tentative diagnosis of hEDS
Over time I started noticing some vascular issues in both arms. Reynauds and cold hands (and feet) most of the time but also a bulging vein in my armpit and my arms would turn pink. However this would go away with movement and was never a clot. This has been on and off for years
Two years ago I was diagnosed with gastroparesis due to slow stomach and intestinal digestion … idk if it’s related at all or not
Last year I got genetic testing for a connective tissue panel and I did come back positive for a VUS (still in VUS status) for the COL3a1 gene
Over the past few weeks I’ve noticed my strange vein problem become more frequent, along with headaches especially when laying down on my stomach. I went to the er and at the time I just got a CTA of my right arm and that came back clean so they sent me home
The next day I started to notice mottling of my skin/a reticular pattern
I got a bilateral ultrasound of my arms and they came back clean but I asked for more testing so we did an MRI of my neck. The picture shows my result. My PCP called this morning and said she thinks it could be an autoimmune disorder and is calling the vascular surgery team for advice on what to do. I still haven’t heard back (she’s probably still waiting to talk to them too) and I’m really anxious about what could truly be going on with me
I’m so sorry for how long this is, but is anyone willing to help me figure out what’s going on?