Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi all I would like to ask those who have VEDS...is there any reason why I should go to see a vascular doctor and do any of you do that? I have no medical issues at this time but was just wondering if I should have one on board. Am going to my GP this afternoon and was going to ask her? Thanks Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Betty, just in case Sue doesn't get back to you, I know she has a vascular doctor. In MY opinion, I do think it would be a great idea for one to be familiar with your condition, and for you to meet him/her and decide if you like them in case the need ever arises. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Betty, Both of my children were referred to a vascular doctor and he is now the doctor whom we would call if the need arises. He also provided a letter for each of the children explaining the condition and what should happen if they should need to go to an emergency department. I think it would be a good idea to have one. Beth Question?? > Hi all > I would like to ask those who have VEDS...is there any reason why I should go to see a vascular doctor and do any of you do that? I have no medical issues at this time but was just wondering if I should have one on board. Am going to my GP this afternoon and was going to ask her? > Thanks Betty > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Betty, If you do have VEDS. It's best to get to know a Vascular surgeon and get some baseline tests done even if you have no issues right now. You might in the future. And it's just better to get one now whom you like and trust and can build a rapport with so they'll be there and know you in case something occurs in the future. Sincerely, S. I do have one! Question?? > Hi all > I would like to ask those who have VEDS...is there any reason why I should go to see a vascular doctor and do any of you do that? I have no medical issues at this time but was just wondering if I should have one on board. Am going to my GP this afternoon and was going to ask her? > Thanks Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi Betty, I highly recommend seeing specialists who can take the time now when you are not experiencing issues and problems, to assess you and establish a pattern of observance and planning should something ever arise. Planning and communication can make a huge difference here for you and having a team around you who knows EDS, knows you and will respond with the proper knowledge is critical. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Betty, as long as your regular doctor is up on everything and will coordinate things if the need arises, I think that's fine. Sounds like you have a great doctor - good for you! Love Lana 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 2/17/04 2:50:45 PM Eastern Standard Time, llchriste@... writes: << In MY opinion, I do think it would be a great idea for one to be familiar with your condition, and for you to meet him/her and decide if you like them in case the need ever arises. Love Lana >> Yes, Lana, is right. you shuld have one and you should be monitored periodically. Everyone has their own opinion on this one and there is no set protocols for monitoring, much to my dismay, as I believe this is key to properly treating the condition, but it has yet to be proven. While writing a grant for the conference, I looked up soem stats on Marfan's......their life expectancy has increased by approx. 30 years through research and monitoring. I believe this can be done someday for us, they just need to find a way. It might also help to put your mind at ease to know/not know whether there is anything wrong. Hang in there, Betty. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Jill, Beth, . Lana , & anyone else I missed: Thank you for your replies to my question regarding a vascular doctor. I had an appointment with my GP today and I asked her about that and for the moment we will hold off on securing a specialist, as I don't present with a need. Her experience with specialists is that one will be called in when the need arises. I am allright with that as my GP is very on board with VEDS ....I have given her the ER CD and she is following my progress with a complete physical and when I recieve the final results from Dr. Byers we will then put in place the monitoring tests i.e. CT, MRI. Echo ( I have had within the last few months the echo & MRI both of which were normal. The MRI was a cardiac one. SHe is also doing a letter outlining my medical history which I will carry with me. She is very keen to learn more about this disorder so I am happy about that. I have also (per another question I had) decided to go on anti depressants as I have been having a terrible time dealing first with the loss of our son and then my diagnosis. Hopefully this will help. Many thanks to everyone on the list for your continued support. I am so glad this is in place. Take care all. Betty Re: Question?? > Hi Betty, > > I highly recommend seeing specialists who can take the time now when > you are not experiencing issues and problems, to assess you and > establish a pattern of observance and planning should something ever > arise. Planning and communication can make a huge difference here > for you and having a team around you who knows EDS, knows you and > will respond with the proper knowledge is critical. > > Jill > > > > > > > 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 Hi Betty -- I know I'm a little late in getting back on this (work, work!!!!!), but I think it would be a good idea to at least have the name of a specialist (one who is willing to work with people who have VEDS - providing your test comes back that way). It can be hard finding someone who is willing to take it on. Your primary sounds very good, but I think it would be wise to have a vascular surgeon on board who is familiar with you just in case anything should happen. That way they would be prepared, too. I have a vascular surgeon I see every six months, a cardiologist once a year (or more if needed), and am now on the search for a GI doctor. I guess I look at it as - the more specialists I have on my side, the better off I would probably be if something should happen. But, if you are comfortable with your primary and her recommendations, then that is what is important. Go with your gut feelings. Hope this helps, Patti Question?? Hi all I would like to ask those who have VEDS...is there any reason why I should go to see a vascular doctor and do any of you do that? I have no medical issues at this time but was just wondering if I should have one on board. Am going to my GP this afternoon and was going to ask her? Thanks Betty Quote Link to comment Share on other sites More sharing options...
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