Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Sue Thank you for your thoughts...one question however is what can a vascular doc do with regards to monitoring me?? (that my GP doc isn't i.e. tests?? Your take ?? Betty Re: Question?? > In a message dated 2/17/04 10:02:43 PM Eastern Standard Time, > pmelcher@... writes: > > << But, if you are comfortable with your primary and her recommendations, > then that is what is important. Go with your gut feelings. >> > > I'm going to be blunt here Betty......your primary is not going to do surgery > on you if the issue ever arises. Your primary means well, and sounds very > supportive, but still may not have enough information. > > I thought your son did have a positive skin biopsy or tissue testign, and you > were waiting for the DNA results? And you have it too? If you are only > awaiting the second part of the test, which entails finding the specific mutation, > it is not the " final' result, just the second part after you have been > confirmed. If you truly do not know either way, then you could wait, but you > should consider no matter what the result is your son passed away from a vascular > event, just this alone should require you to be monitored if they truly believe > it came from you. I hope this helps. > > Hugs, > Sue > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 In a message dated 2/18/04 1:16:02 AM Eastern Standard Time, tabby2@... writes: << .one question however is what can a vascular doc do with regards to monitoring me?? >> Example.....he can look at the VEDS CD and prepare himself for what he would need to do to fix you in the event of a life threatenign complication. The CD has surgical techniques that have been proven to work in the past on those of us with VEDS. If he doesn't have this info, surgery can be devistating in an individual with VEDs. He also can anticipate graft sizes, or what he might do in an emergent situation, where with no advance warnign you can catch someone off guard, and they won't have the same information or ability to save you. Plus, don't you want to make sure that whoever you choose has your best interests at heart? You wait for an emergency...you have no idea who you are dealing with. Not all vasacular surgeons are created equal. this is just my opinion and I have gone through many life threatening complications. I am still here. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.