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Old 08-03-2008, 11:14 AM   #16
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Re: Looking for surgeon to remove Pituitary Tumor

Muffinmom,
I mentioned in another thread that my pre-surgery symptoms turned out not to be related to the non-secreting tumor, therefore I still get migraines and still have a double vision problem related to a retinal problem. My post surgery symptoms that I just described, stuffed nose, etc. are all gone. One of the post surgery things I forgot to mention was a headache right after surgery for the first 24 hours. That was over by the third day and I didn't even take tylenol after that. I still don't think I have as much energy as I use to but my thyroid is slightly low and the endo is watching that plus I'm not as young as I use to be. Everything else is normal and in fact we are leaving for LA today to babysit our 1 year old granddaughter. Now, that wears us out! The best to you in surgery this Thurs and I will be thinking of you. Please post how you did. Diana

 
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Old 08-03-2008, 01:13 PM   #17
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Re: Looking for surgeon to remove Pituitary Tumor

Thanks to everyone for all the info and posts. I haven't gotten back to you because I have been so busy trying to figure this out! I have been told so many different things here in Vegas, that I don't believe they know what they are doing or talking about. I did contact UCLA and was told to go thru neurology, get current scans and make an appointment. Made sense. But I kept searching the net and found a support group there in California. And on her site, she has some videos of a Neuro-endo guy and they were very long and very informative. I got his number off her site posted under great docs and got an appointment for September. Well, I decided to just call Dr. Kelly at St.Johns, and I was so impressed with the receptionist there. She told me to immediately fax over all records , scans, and any info and they would get back to me. She told me they got back to people usually in 24 hours. When I didn't hear anything for a week, I called them. They had a full set of orders for me. He had reviewed the films , bloodwork and I was given a diagnoses of pituitary adenoma but they still aren't sure what type. Since no one has ordered a scan here in over a year, I am going to get a 3D one ( which is going to take a month to get in there) and lots more bloodwork. They told me they were , as always, shocked that the doctors here haven't done any more but I guess that is normal for this tumor!! Damn it! I just wanted to say that I feel very good so far about Dr Kelly and St john's from all I've read and what I have seen from them so far. Much more concerned about this than anyone else and that feels good. I have been ignored for too long. The next place I will call tho is the Skull Base Institute on your recommendations as I will want a second opinion, want to meet these guys and see who it is that I want to operate on my brain. I am like everyone else...excited to FINALLY be doing something and holding the hope of getting all better soon...and the fact that this is still brain surgery and that the carotid artery is Right in the line of incision..one wrong move and you can have a massive stroke. I am going to an EXPERT....no matter what anyone says, this is a very big deal. I am not paranoid. Surgery is better than what I am going thru. But caution goes a very long way. Like you all said..a guy who operates once a month is no match for guys who do this and only this and keep statistics. Reputations are hard to build so my advice to anyone else is more of what has been said...get someone good who you believe in. I read 'the 'places to go are: Mass. General/Harvard, UCLA, Pittsburgh, Skull Base Int. , and St Johns. I'm sure there are more..those are only the ones I had a chance to look at. Wow...maybe I can get this finally taken care of!

Last edited by bethlee; 08-03-2008 at 01:16 PM.

 
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Old 08-05-2008, 02:04 AM   #18
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Re: Looking for surgeon to remove Pituitary Tumor

Some posters mentioned UCLA and a prominent pit dr there. Stanford also has a good track record with pit tumors. And retired Dr Charles Wilson (one of the founders of the Transphoidal surgery) was the Head Neurosurgeon at UCSF.

25yrs ago when the Transphoidal surgery was new, I had surgery for a Prolactinoma. Eventhough I was diagnosed at UCSF, I didn't have ins. and had to go through the county that I lived in.
I purposedly did not ask the neurosurgeon if and how many of these surgeries he had done............because I was afraid of his answer and had no choice. Fortunately he brought in an ENT to assist and rebuild my sinuses. So I think that I did better then most.

Last edited by Anita Porpoise; 08-05-2008 at 02:05 AM.

 
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Old 08-05-2008, 10:39 PM   #19
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Re: Looking for surgeon to remove Pituitary Tumor

<removed> I had my surgery at Stanford and was very pleased though UCSF and many others have good reps. The most important thing is how many of these surgeries do they do.

Last edited by mod-anon; 08-05-2008 at 10:49 PM. Reason: do not instruct members to do outside searches

 
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Old 10-01-2008, 04:16 PM   #20
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Re: Looking for surgeon to remove Pituitary Tumor

Bethlee,
Did you ever have your appointment with Dr. Kelly? If so, how did it go and will he be able to help you? The receptionists there are very nice and knowledgeable. By any chance did you go to September's support group meeting? Sorry for the late inquiry, I thought about your meeting but haven't been on the boards recently. Diana

 
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Old 09-23-2009, 04:49 PM   #21
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Re: Looking for surgeon to remove Pituitary Tumor

Call Dr. Shahinian at Skull Base Institute in CA <removed>. They have a patient who had this surgery and who was pleased with the results.

Last edited by mod-anon; 09-23-2009 at 07:48 PM. Reason: Do not post contact info. Please read and follow the posting rules.

 
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Old 02-03-2010, 06:58 PM   #22
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Re: Looking for surgeon to remove Pituitary Tumor

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.

 
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Old 02-09-2010, 06:50 PM   #23
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Re: Looking for surgeon to remove Pituitary Tumor

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.

 
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Old 02-18-2012, 06:08 PM   #24
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Re: Looking for surgeon to remove Pituitary Tumor

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!

 
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Old 03-03-2012, 12:07 PM   #25
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Re: Looking for surgeon to remove Pituitary Tumor

Quote:
Originally Posted by bethlee View Post
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!

 
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Old 10-10-2012, 03:33 AM   #26
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Re: Looking for surgeon to remove Pituitary Tumor

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

 
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Old 10-21-2012, 11:36 AM   #27
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Re: Looking for surgeon to remove Pituitary Tumor

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.

 
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Old 10-24-2012, 10:35 AM   #28
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Re: Looking for surgeon to remove Pituitary Tumor

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 View Post
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

 
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Old 11-15-2012, 08:58 AM   #29
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Re: Looking for surgeon to remove Pituitary Tumor

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

 
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Old 03-01-2013, 05:29 PM   #30
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Re: Looking for surgeon to remove Pituitary Tumor

Hi Jul2:

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.

 
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