Responses from some CT doctors
Posted: Fri Jul 03, 2009 12:53 pm
Hi everyone! A lot has been happening on here. Its almost imposible to keep up.
I just wanted to share with everyone comments from some of my CT doctors. I gave some of the articles from the sticky to 4 different doctors in the area. Two are primary care docs and two are ENT docs. I work in an ENT clinic so I gave it to the docs I work with. One, whom I highly respect, read the article and then said the most ridiculous thing to me ever. I actually will not post it as I truly do highly respect this doc. The other doc (he specializes in throat and neck cancer) I work with actually read everything I gave to him wrote notes in the margin and highlighted sentences and he told me that overall he was completly astonished by the results. When I first gave it to him he was a little hesitant because he said research out of Europe isn't as strickly guided as it is here in the US and sometimes the studes aren't conducted very good and when reapeated here in the US the results are drastically different. He then went on to say that he doesn't see how the results could be very different as the study was done very well and they were using tests that are done often. He basically said "there is really something here, but too soon to say what...but obviously there is a correlation..." So then he went on to tell me that he thinks I shouldn"t really do anything with this knowledge as its cutting edge info and not fully reseached. He wouldn't want me to get into something that was going to make everything worse. He said the stent surgery is risky and might need several trials to iron all the kinks out...that its not quite as easy as "just sticking a stent in the the vein." So he didn't really recommend me getting an MRV or contacting Dr. Dake. He feels that my MS is too mild to get into anything so drastic (EDSS 0 with no symptoms and only two major exacerbations) and I should wait. However, he knows that this is a highly personal decision and would support me in whatever I choose and if I wanted to get an MRV he would help me and find the best radiologist at Yale to help out. I haven't decided what to do yet?
Ok sorry this is so long. I'll quickly tell you about what my PCP said. He told me that the article "all makes so much sense" and its worth looking into. He said I should first talk to my neuro (I have an appt. on the 14th Ill let you all know how it goes) and see what he says. If he is not able or willing to help me he recommended I call Dr. Dake and see what he thinks I should do and maybe he can tell my PCP the correct test to order. My pcp did say that CCSVI really makes sense for me specifically as I was born with a ventricular septal defect (VSD) and I have raynaurds. Does that make sense and fit with the CCSVI puzzle?
So I guess I just really don't know what to do. I am young (30 years old) and was dx 3 years ago. I have only had two exacerbations and no disability. I am however, highly allergic to copaxone and the interferons don't seem to work for me so I am doing monthy steroids and montly IVIG. They seem to be working fine. My husband and i are thinking of having anther kid soon and not sure if we should jump into this full speed ahead or just wait a year or so and see what comes of it.
Thanks everyone! I'll keep you updated on what my neuro says on the 14th.
I just wanted to share with everyone comments from some of my CT doctors. I gave some of the articles from the sticky to 4 different doctors in the area. Two are primary care docs and two are ENT docs. I work in an ENT clinic so I gave it to the docs I work with. One, whom I highly respect, read the article and then said the most ridiculous thing to me ever. I actually will not post it as I truly do highly respect this doc. The other doc (he specializes in throat and neck cancer) I work with actually read everything I gave to him wrote notes in the margin and highlighted sentences and he told me that overall he was completly astonished by the results. When I first gave it to him he was a little hesitant because he said research out of Europe isn't as strickly guided as it is here in the US and sometimes the studes aren't conducted very good and when reapeated here in the US the results are drastically different. He then went on to say that he doesn't see how the results could be very different as the study was done very well and they were using tests that are done often. He basically said "there is really something here, but too soon to say what...but obviously there is a correlation..." So then he went on to tell me that he thinks I shouldn"t really do anything with this knowledge as its cutting edge info and not fully reseached. He wouldn't want me to get into something that was going to make everything worse. He said the stent surgery is risky and might need several trials to iron all the kinks out...that its not quite as easy as "just sticking a stent in the the vein." So he didn't really recommend me getting an MRV or contacting Dr. Dake. He feels that my MS is too mild to get into anything so drastic (EDSS 0 with no symptoms and only two major exacerbations) and I should wait. However, he knows that this is a highly personal decision and would support me in whatever I choose and if I wanted to get an MRV he would help me and find the best radiologist at Yale to help out. I haven't decided what to do yet?
Ok sorry this is so long. I'll quickly tell you about what my PCP said. He told me that the article "all makes so much sense" and its worth looking into. He said I should first talk to my neuro (I have an appt. on the 14th Ill let you all know how it goes) and see what he says. If he is not able or willing to help me he recommended I call Dr. Dake and see what he thinks I should do and maybe he can tell my PCP the correct test to order. My pcp did say that CCSVI really makes sense for me specifically as I was born with a ventricular septal defect (VSD) and I have raynaurds. Does that make sense and fit with the CCSVI puzzle?
So I guess I just really don't know what to do. I am young (30 years old) and was dx 3 years ago. I have only had two exacerbations and no disability. I am however, highly allergic to copaxone and the interferons don't seem to work for me so I am doing monthy steroids and montly IVIG. They seem to be working fine. My husband and i are thinking of having anther kid soon and not sure if we should jump into this full speed ahead or just wait a year or so and see what comes of it.
Thanks everyone! I'll keep you updated on what my neuro says on the 14th.