I have an appointment scheduled at NIH for what my endocrinologist thinks is Cushings Disease. Pituitary microadenoma is 8x8x7 mm. Unlike other pituitary centers, I can't find anything on NIH's website that gives me any back ground on their Neurosurgeons. I have Kaiser insurance and they only use NIH. I may have to appeal to use John Hopkins Pituitary Center if NIH fails to meet my requirements for expertise. My biggest fear is that it's a research/teaching hospital and a resident in training will be assisting in the operation. Has any one had pituitary tumor removal from NIH and can shed some light on their experience?
NIH is a teaching hospital, true - but it is THE premier place and super difficult to get in there. It is even hard to get in there as a patient! They might be the choice as they are subsidized (or were) so once you get in, care is cheaper as they usually get rolled into a study, but the care itself is top notch.
I know people who have had surgery there - all of them had surgery with a surgeon, not a resident. That is not to see there might be one in the room to watch, but the person doing it is the surgeon named. When you are there though, odds are a group of residents will come visit to see you though to learn.
NIH also sponsors a lot of the clinical trials for new treatments - not all in Maryland but some in other hospitals.
Thank you for some reassurance. My appointment is April 23rd. I've been waiting 3 months for my initial consult, so I'll go and hopefully meet "the team." I've watched a couple of orientations on line addressing the endonasal pituitary tumor removal. Like you have stressed on this website, the Neurosurgeons also stress the importance in choosing a VERY well qualified neurosurgeon. I've actually been most impressed with Dr. Edward Lawes's portfolio. He is at Brigham and Women's Hospital in Boston. He only accepts certain insurances, so unfortunately, unless I pay the estimated $80,000 I was quoted.....I won't be seeing him. He has something like 5000 pituitary surgeries under his belt.
I'm so happy I found this site. You seem so knowledgeable about the endocrine system. As you know, symptoms are living hell. Looking forward to NIH consultation. Armed with knowledge, I want the best. In mean this is my brain right???
Yes dr. Laws is v good, but he is getting up there in years. He has trained many surgeons in the trans nasal technique and has really been the person responsible for these less invasive procedures that we have now. So you might ask possible surgeons if they were trained by him.
Dr Laws, is from what I know, the most experienced in the US. He does work and train other surgeons - including the expert on this site who is also well regarded.
I am so glad (thrilled!) that you are researching surgeons. It is, IMHO, the first most critical factor in a good surgical outcome. The second one you don't have control over - and that is your anatomy - the tumor and just how the tumor sits and how things are up there. The third is a supremely good neuro-endo as if you have a complication or issue with hormones post-op, you may need assitance ASAP, and then you need long term monitoring and hormone support as needed.
I used surgeons where I paid a bit out of pocket for both my surgeries just to get a bit better doctor - but not 80k - it is certainly a factor to get the best you can for the $$$.
I'm out of state right now. I need to read (again) the position if the tumor. When I get home, I'll check my record of the MRI. I don't remember it growing into the sinus...but now I'm anxious to analyze the position. Just waiting on the last of my test. My endo at Kaiser wanted a 48 hr dexamethasone s
...(cont.) test as the last thing prior to seeing NIH. He had me do a serum baseline cortisol first. Then I took 8 mg of dex at 11 pm and had my blood drawn 8 am next morning. Then he had me do a 48 hr urine collection while taking 2 mg of dex every 6 hrs. Even the lab questioned why the 48 hr urine. I had already done the 24 hr urine dex test. Maybe he is being more thorough? He is a regular endo, but stepped in to help my primary endo when my tests were pointing towards Cushings. His name is Dr. Keetchap. He has worked with a few Cushings patients. I'm not sure if he will follow me after surgery. His knowledge about the pathophysiology of the disease impressed me and when analyzing my test results, he seems to know what he is doing. Once I get home, I'll post my labs and findings . I would like your imput, if possible. Thank you!
Usually, one takes the medication for 48 hours - and then does a blood draw. There are different ways to do dex tests and you can do them with blood or urine. Blood is serum, urine measures free cortisol. Blood is point in time, 24 hour urine is an average. Both have good and bad points.
The short (take the 1mg dex at 11pm, draw 8am the next morning)with blood or the urine do a urine collection off dex, then take 1mg dex every 6 hours (what a pain!!!) for day two, then day three, collect another day (keep both jugs very cold both during and after collection!). So you have to be careful on the timing of the start of the test and take the meds on time, as well as the timing of the start and stop of the urine testing etc. It will be a complex three days. I hope he does not ask for the long one - it is 1mg dex over 6 days every six hours. I gained 20lbs in a week. I was also a raging nasty person. I hated it.
The urine one is frankly not usual. I have never done it and most people I have known have never done it. I have done all the dex testing, but only blood and I did my testing for a research doc.
Every doc has their own protocol - and it is very interesting!
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