Neuroendocrine Center at MGH/Harvard?

[Naominjw]

OK... I get the idea that I should have gotten my daughter (now adult) to a neuroendocrine center years ago. I just don't understand why we have to figure everything out ourselves!

So... I guess Monday morning I will request her GP set up a referral for her at the neuroendocrine center at Massachusetts General Hospital/Harvard Medical Center (http://pituitary.mgh.harvard.edu/) in Boston.

Does that sound like a good place to take her? As far as we know, she does not have a tumour nor a lesion. She has "idipoathic" hypopituitarism. Her GP is having her screened right now for hemochromatosis... which I sincerely believe will be negative (absolutely NO family history of it)... but she deserved to be screened. We'll have those results in a couple weeks.

Feedback, please. MGH a good place to go? Any specific doctor we should ask for? How long to get in?

Thank you,
-"Naomi"

[rumpled]

[QUOTE=Naominjw;258240]OK... I get the idea that I should have gotten my daughter (now adult) to a neuroendocrine center years ago. I just don't understand why we have to figure everything out ourselves! QUOTE]

No one wants to take the time to think in the two minutes they give you these days, besides, pit tumors are benign, they don't do anything to any body anyway! Just ignore them! *pukes*

I called MGH in my quest... I have heard mixed reviews in my world... but that is because they are conservative in that they will not diagnose a cyclical cushing's patient so I did not go. When you do go, you are met with a resident who does your intake so to speak (your preliminary examination, history etc) and then the doctor comes in to speak with you about any diagnosis and possible testing etc. That is pretty standard at teaching hospitals (have had that at other places as well). So you should expect to be there for a while. Some of my friends had a good reception, others were tossed at the first appointment. I hope you get a GOOD appt. Your daughter deserves it. I only know of the surgeon there (Swearingen) who is excellent... I don't know of the endos.

I bring, as you do, tons of documentation. In some places, they love it, in others, I have found, they think it is... reaching? I am not sure the word but instead of them thinking that I am genuinely looking for health and a way to get back to my career, they think I am a hypochondriac (with 5 tumors!). I am not sure how MGH is but I hope someone responds.

[Galatians221]

I have to direct anyone to Swedish Hospital in Seattle to Dr. Bill Ludlam. I went all over the country and was basically ignored until I finally spoke to Dr. Ludlam on the phone. He is building the finest pituitary center in the nation and while I'm sure there are others, I have direct experience with Dr. Ludlam and Dr. Mayberg. Here's a link if you want to check it out

http://www.swedish.org/body.cfm?id=2261&oTopID=22

[Naominjw]

I have to direct anyone to Swedish Hospital in Seattle to Dr. Bill Ludlam. I went all over the country and was basically ignored until I finally spoke to Dr. Ludlam on the phone. He is building the finest pituitary center in the nation and while I'm sure there are others, I have direct experience with Dr. Ludlam and Dr. Mayberg. Here's a link if you want to check it out

http://www.swedish.org/body.cfm?id=2261&oTopID=22

I think I understand WHY you like them.... it sounds so... PERSONAL. We have been to a big University hospital before (repeatedly) and... like you... my daughter was ignored.... one time with a life-altering repercussion.

MGH at least has a neuroendocrine unit which our local big university hospital does not. Seattle.... that is the farthest away we could possibly go :(
But... But.... if nobody has anything good to say about MGH or can give me a specific doctor.... I guess we will go to Swedish. We really would prefer a specific doctor. Thank you so much for giving us Dr. Ludlam's name. I hope my daughter won't need Mayberg--the neuosurgeon. I honestly don't think she will.


-"Naomi"

[rumpled]

You can call and make a phone appointment first and talk to him. His specialty is Cushing's disease (he does a lot of studies) and I know a lot of people who have seen him, used him both at OSHU and at Seattle.

[Galatians221]

You can call and make a phone appointment first and talk to him. His specialty is Cushing's disease (he does a lot of studies) and I know a lot of people who have seen him, used him both at OSHU and at Seattle.


Absolutely. I had a series of phone conversations with Dr. Ludlum and actually turned him down and went to the Univ. of Virginia which was a horrible mistake. I was also impressed with Dr. Prevedello in Pittsburgh who also spent a lot of time with me on the phone and said much the same things that Dr. Ludlum said. Ludlum just hosted a pituitary conference in Seattle and knows all of these doctors. It wouldn't hurt to talk to him. I email him most days as I recover. His email address is on the web site. Be prepared....he may call you at home in the evening and will give you all of the time that you need to ask him the questions that you need answers to.

[Naominjw]

Except that my daughter's problem is not Cushings... it is incredibly complex with hypothalamic involvement--low hormones--intestinal issues, low cholesterol, vitamin B metabolic glitch, medications..... so many things that can all influence the low hormone levels... and all a big question-mark.

Now I am wary... because of the emphasis on Cushings.

AAARRRRGGGGHHHHHH!!!!!! Where did I put that crystal ball!!!????

Well... It won't hurt to give him a call.

Thanks.