friday Posted June 24, 2006 Report Share Posted June 24, 2006 Ive been reading quite a few posts about how people are going to see Dr. Grubb. And some of you travel quite far to see him. I've noticed his name on a lot of the reference material on this site. Seems a lot of people think he is quite a doc.My question is to those who travel to see him.What has he done for you? I don't mean that to sound wrong. But I mean if you travel a long way i'm assuming you don't see him very often or maybe just have gone for the one visit, and so I'm wondering what has he been able to do for you without seeing you on a regualr basis. I know a lot of people say he is very kind and has a wonderful bedside manner. Is it just comfoting then to see someone that is so understanding. Has he been very intuitive with what meds will work for you ?Or maybe does he work with your own doctor? Has he been known to help a lot of people with POTS? i'm just curious about him and how one gets help from someone so far away.Sue Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 25, 2006 Report Share Posted June 25, 2006 HI,I think that it's something you have to experience yourself to be able to understand what he means to us. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted June 25, 2006 Report Share Posted June 25, 2006 well ernie put it right.. dr grubb has been a godsent to me.. and others..he is only human.. but he does the best that he can to help us... and does not judge you or call you crazy.. no matter how insane your symptoms sound... Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 25, 2006 Report Share Posted June 25, 2006 I personally travel the 11 hours by car because it's worth it to me to have someone managing my care who actually undestands my disorder and understands what treatment may work for me and what NOT to do. After seeing so many doctors where I live, in Philly, in NYC and all points in between, it was refreshing not to have to be the one explaining what I have and what needs to happen to me.After all the years of being told there was nothing wrong, or I just need to stop trying to burn the candle at both ends (hah! I didn't even have the energy to burn ONE end! ), or being told I was depressed, or hunting for attention because I saw so many doctors, I regret not having gone sooner. I paid (or my insurance pain) for all those fruitless, pointless visits--and years of my time wasted b/c my POTS wasn't treated.He's not able to perform miracles--but it may feel like a miracle if you've not been getting adquate care for your disorder. That's why I continue to go back over the years. I know I will not have to spend my money and time being frustrated.Nina Quote Link to comment Share on other sites More sharing options...
sky Posted June 26, 2006 Report Share Posted June 26, 2006 I personally travel the 11 hours by car because it's worth it to me to have someone managing my care who actually undestands my disorder and understands what treatment may work for me and what NOT to do. After seeing so many doctors where I live, in Philly, in NYC and all points in between, it was refreshing not to have to be the one explaining what I have and what needs to happen to me.After all the years of being told there was nothing wrong, or I just need to stop trying to burn the candle at both ends (hah! I didn't even have the energy to burn ONE end! ), or being told I was depressed, or hunting for attention because I saw so many doctors, I regret not having gone sooner. I paid (or my insurance pain) for all those fruitless, pointless visits--and years of my time wasted b/c my POTS wasn't treated.He's not able to perform miracles--but it may feel like a miracle if you've not been getting adquate care for your disorder. That's why I continue to go back over the years. I know I will not have to spend my money and time being frustrated.NinaI understand the answers to Friday's question for people who have not been dx. It must be a joy to first see a doctor who understand the disorder. But what about those of us who have been dx. I was dx at Vanderbilt and only given certain coping strategies but no meds that helped. I was already on Flournef. So the question is would it still be a good idea to see Dr. Grubb in the hope that he could come up with a med that would help that Vanderbilt did not. I was at Vanderbilt in Jan. of this year. Aside from meds is there any other way that Dr. Grubb could help for people who hae been dx and have been to Vanderbilt. I am willing to take any measure that might help but do not want to spend time and money just to see another doctor. Thanks in advance for your replies. Quote Link to comment Share on other sites More sharing options...
Patricia Gallup Posted June 26, 2006 Report Share Posted June 26, 2006 Dr. Grubb is usually quite good at looking over records and tailoring treatment to patients. However the meds for POTS are virtually all the same, so don't expect he has anything new that no one else knows about. He may be able to weed out what doesn't work for YOU, and suggest something faster than other places. Our family believes that Dr. Grubb is fantastic, but is also most receptive to patients who are also willing to help themselves. Follow his exercise suggestions, seek counseling for chronic illness, learn to accept your life, and give the meds he prescribes enough time in your system to work or not work. If any patient isn't willing to put as much of their effort into feeling better, as the effort a doctor makes in suggesting treatments and improvements that could be made, it's probably not worth any doc's or patient's time and money to show up.Dr. Grubb is very involved in dynakids, and has a pretty good success rate at helping younger people improve their lives, I don't believe older people have the same results for many different reasons, but personally, our lives are certainly better because he's in them! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 26, 2006 Report Share Posted June 26, 2006 Just a point to clarify: I already had a DX when I went to see Dr. G. The reason I went there is b/c my diagnosis doctor offered me no follow up care when the first meds they gave me were not as effective as we'd hoped.Nina Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 26, 2006 Report Share Posted June 26, 2006 Hi,I had already a diagnosis, and gone to many famous research facilities.Dr Grubb is Dr Grubb! Quote Link to comment Share on other sites More sharing options...
sky Posted June 26, 2006 Report Share Posted June 26, 2006 ernie and mighty mousethanks for your replies but could you be more specific. If you already had the dx and the meds how were you helped by Dr. Grubb. I am fortunate in that I have a cardio who moniters me but has never had a dysautonomia patient before. So he is caring and open minded but not really an expert. I am more than willing to go to Dr. Grubb if I thought it would help in any way. Of course, I certainly know no miracles exist. I am grateful to Vanderbilt as if I had not gone there, I would have wondered about my dx and if anymore could have been done but I did not get a magic pill. Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 26, 2006 Report Share Posted June 26, 2006 Hi,I did not have the meds. He is the one who gave me the meds. Quote Link to comment Share on other sites More sharing options...
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