HI Rumpled! My daughter has a 8-9mm prolactinoma tumor. Had for 10 yrs, medicine caused her bad side effects, she was used to, then 2 1/2 yrs ago the meds just stopped working, even at high doses. She lives in S Florida. Dr Kelly has been in telephone and e-mail contact with her. She really likes him. I see you flew from NY to LA. How did it go for you flying after the surgery? We've been told to plan on being in CA for 2 weeks. She is also considering Dr Oyesiku at Emory Healthcare, Atlanta, GA...which we could drive to.
dr kelly is so great. he personally called my daughter and e-mailed her, met with her. unfortunately she lives in south florida and dr kelly in california. so she going to have it done in boston with dr laws, brigham and womens. hard decision.....if dr kelly was closer it would have been a real easy choice.
I know you posted so long ago..but am wondering how your daughter's surgery with Dr. Laws went? I am considering him. I hope your daughter is happy and healthy now, as well as you! Thank you!
Thanks for all the info! Vegas has the worst health care! I have a craniopharyngioma and I want it out. I can't take one more day of pain and vomiting. It has taken a long time to even know what it is but now that I do, I want it corrected! I will definitely look into the Dr. you named. I spent all day looking at UCLA and the head of the dept there sent me an email already in reply. That was a surprise. I just want to go somewhere that this is all they do and they do it well. Thanks again to all who posted!
I never saw that Kelly guy in the United States myself, but I did email him once and he does sound not only caring, but brilliant. In fact, he is probably the only surgeon I would trust!
I have been diagnosed with a microadenoma.A small tumor.I am not sure if I am gonna need surgery but am looking for a Dr. on the East Coast.I would like a Dr. that does not pack your nose because I am clostraphobic and the thought of having my nose packed up is making me having a hard time to breath just thinking about it.I have read online that there is some kind of surgery that they do not pack your nose.Is there anybody out there that can help me.PLEASE HELP ME ...THANK YOU
I had pituitary tumor surgery 6 years ago. I live in the Phoenix area and we have the Barrow Neurological Institute here that specializes in this. People travel to Phoenix from all over to have their operations done at this facility.
It is important to have the surgery done by somebody who performs a lot of these surgeries.
Last edited by Administrator; 10-21-2012 at 07:06 PM.
I assume you're asking from the US, but I will give you my feelings from Canada because I fear that I will die from a large tumour myself.
If it's possible to do such a thing, the only guy in the world I would trust would be Dr. Daniel F. Kelly at the John Wayne Cancer Institute in California. He has answered questions for me even in Canada although I haven't yet been able to get back to him with all the details because the waiting period here for the diagnostics he suggested (the type that should've been done many years ago) was very long and I'm still waiting for a few months yet.
This guy is really on the ball! He cares about people and is super intelligent! One day I hope I will be able to afford treatment from him because I would be too scared to get it done anywhere else.
The only problem with seeing him from Canada is that Canadian doctors get very upset when people go to the USA for treatment. They tell patients that if they do that, their case will never be handled in Canada again. They say they don't like to mess with another person's work because it can be dangerous.
I don't know what happens to Americans who have ever seen a surgeon in the USA and then move here permanently. I guess they will be forced to go back to the USA each time they need treatment? Either that, or they have to return I guess.
Quote:
Originally Posted by frenchy2011
I have been diagnosed with a microadenoma.A small tumor.I am not sure if I am gonna need surgery but am looking for a Dr. on the East Coast.I would like a Dr. that does not pack your nose because I am clostraphobic and the thought of having my nose packed up is making me having a hard time to breath just thinking about it.I have read online that there is some kind of surgery that they do not pack your nose.Is there anybody out there that can help me.PLEASE HELP ME ...THANK YOU
Hi Diana,
The doctor in Germany discovered a pituitary adenoma in my head (2004) and they had done the endonasal transphenoidal surgery very well. Later on,in 2011, I discovered , my cortisol level is below the standart level. There is a baloon-shaped like in the same area as in 2004. Of course I take hydrocortisone pils every day to support my need. Next year, I'm going to life in US. Can you tell me how to make myself is being covered financially, when I want to have medication in US? I am an Indonesian, and I will be in US for a study.I think dr Daniel F.Kelly is a good reason why I should let my medication in US.Thanks
Just wondering where you are in your quest to get the diagnostics done in Canada? Also, wanted to let you (and the rest of the board) know I had surgery with Dr. Kelly (and ENT Dr. Griffiths) 3 weeks ago and he is as wonderful as everyone suggests. I didn't have a pituitary tumor, I had a cholesterol granuloma, which is rare (175 cases/year in the U.S...no health board forum for us), deeper in the brain and in my case risky, with a large tumor wedged between my skull base and carotid artery, and compressing my 6th cranial nerve. I spoke with neurosurgeons all over before I decided on Dr. Kelly. Everything went very well for me. I hope your surgery goes well also.
