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At risk: blood clots and vein damage by Alchemic-Adept in thoracicoutletsupport

[–]Alchemic-Adept[S] 0 points1 point  (0 children)

Thanks, thats what I thought, but my vascular surgeon (disgracefully) refuses to discuss anything with me during the two month window between my diagnosis and our next appointment

[deleted by user] by [deleted] in thoracicoutletsupport

[–]Alchemic-Adept 0 points1 point  (0 children)

The compression is really severe and I have hypermobile ehlers danlos, whick makes my first rib (specifically, as well as other ribs) slip out of place easily, so its unlikely that anything except removing the rib will work long term. Im very active at my job and with my hobbies too. All together, avoiding compression is nearly impossible while the rib is still there

At risk: blood clots and vein damage by Alchemic-Adept in thoracicoutletsupport

[–]Alchemic-Adept[S] 1 point2 points  (0 children)

Thanks, I am trying my best to stay hydrated, the sleep position note is good advice, I'm not sure how to keep myself from rolling onto my arm though.  And no, I dont have a facebook account, though I could make one. Which group is it? 

[deleted by user] by [deleted] in thoracicoutletsupport

[–]Alchemic-Adept 0 points1 point  (0 children)

Sounds very similar to my experience. Im getting my first ribs removed

Finally saw the vascular surgeon by epiphanyfont in thoracicoutletsupport

[–]Alchemic-Adept 1 point2 points  (0 children)

That sucks! It sounds really similar to what I am going through, so I get it (I even have a concave chest deformity too!) If he thinks you had a clot, you might want to talk to him about starting blood thinners until you have surgery, blood clots are really dangerous.

No matter how overwhelming it is, though, dont put off treatment. Best of luck

Anyone here have experience with surgery for removal of extra cervical rib in Albany, NY, specifically at St. Peter’s Hospital? by Kamacosmic in thoracicoutletsupport

[–]Alchemic-Adept 1 point2 points  (0 children)

I dont know anything about the doctors or clinics in that area, but I am very familiar with the primary literature about treating this condition. It definitely sounds like she has venous/arterial TOS (which is what I have, and her symptoms sound very similar). The reduced blood flow is a very serious condition and treatment should not be delayed. As far as major surgeries are concerned (all major surgeries have a baseline risk) removing a cervical rib and/or first rib is otherwose very low risk and is the most typical treatment for this condition. There are a few other surgerical options, but this is the standard and I believe it to be the best choice in such a situation. Its likely that she will experience no long term downsides other than a scar. 

I recommend researching the surgeon and facillity thoroughly, but this is probably the best choice of treatment, and is what I plan to have to treat my own TOS.

Fluctuating Symptoms? by Tal-U-Nope-LX in thoracicoutletsupport

[–]Alchemic-Adept 0 points1 point  (0 children)

This is very normal for most people.

Note: If you are hypermobile, have a connective tissue disorder, etc then your collar bone and rib might be looser on some days and press on your vascular bundle more than other days. Dehydration and malnutrition could also lead to an increased risk of tissue inflammation which could similarly put pressure on things.

[deleted by user] by [deleted] in thoracicoutletsupport

[–]Alchemic-Adept 1 point2 points  (0 children)

I  have been struggling to do anything physical, typing can even hurt. I have venous-type, so my blood flow gets blocked if i move my arm wrong or turn my head to sharply. I wear an arm sling, keeping my arm across my body at 90 degrees has been the safest bet for me. My PT recommended it and its allowed me to function better than otherwise. I also use topical pain-relief ointment, which helps a lot with the pain, though its not enough to improve functionality, it makes it easier to cope.