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Everything posted by Fairley

  1. Kate, New Jersey Pit Surgery #1 - Jan. 2007 (Failed) Pit Surgery #2 - July 2007 (Total Pit Removal; Failed) CSF Leak Surgeries - Oct. 2007 (Failed; still have small leak) Open BLA with 18" incision - Sept. 11, 2008 Gamma Knife Radiosurgery - Oct. 2009 No pit, no adrenals, radiation damage to hypothalamus (cannot regulate body temp.)
  2. Very helpful, Mark! Thank you, and Welcome! Kate
  3. Just giving a shout out from south Jersey! I am having my BLA at HUP in three weeks -- very glad to see that your surgery was a sucess. Thanks for getting the word out in the Philly area! Hugs, Kate p.s. I did an interview for National Geographic, which is on YouTube under "Cushing's"
  4. Hi Mary, I would just like to add that I am gearing up for a BLA and radiation right after that as my tumor has been confirmed in the cavernous sinus now. I am looking forward to the interview, and hope that it will be helpful to everyone. Hugs, Kate
  5. Mary, I'm looking forward to it. I think it will be neat that my mom will be here, too. I hope talking about Cushing's issues will help others. Looking forward to calling in on the 17th.... Love, Kate
  6. Mary, sign me up for July 17. My mom will also be here and maybe can answer some questions about what it's like to support someone through the diagnostic and treatment process. Just someone let me know where to call and how this all works...I'm a newbie to the radio stuff! Hugs, Kate
  7. Maybe some folks will visit the blog and read about Cushing's from our comments!! Great job, Robin, for alerting us to these links! Love, Kate
  8. Katie Kate! How are you, girlfriend? In Dr. F's paper, which will be submitted next month, he mentions that only 1/3 of people with proven Cushing's pass that test. I think the release of this paper is going to be a MAJOR TURNING POINT -- WOO HOO!!!! The diagnostic protocol for people with suspected mild or episodic Cushing's is going to be veddy veddy different than the Old School of Thought. And Dr. Vance may put some weight on the study once it's published. Or one can hope. I think we're going to be seeing history in the making, my friends!!!
  9. Okay, I want to backtrack and in honor of Amber and the other florid cases, hats off to Dr. Vance for helping Cushing's patients who are florid. Robin, didn't Dr. Vance write an abstract or article about episodic hypercortisolism? How can she do that and in another breath decry the existence of cyclical Cushing's? Dr. F, with Dr. McC as a co-author, will be publishing a paper on cyclical Cushing's soon. Dr. McC calls it "important and significant" and says that Dr. F is right on the money with his approach, theories and diagnoses. He hopes the paper will go a long way to changing the old-school thoughts on cyclical Cushing's. Hugs, Kate
  10. I have a mind to send her my measly 8 high tests (including 4 high 17-OHCs), my "strongly-worded positive pathology" report (as described by Dr. L) and the photo from last December's Cushie get-together along with the "glamour shot" taken 3 months post op....and tell her to KISS MY GRITS!!!! p.s. Although an endocrinologist suspected Cushing's in me first, I certainly did wind up "researching" on the internet....and, yes, I was an obese, depressed and hypertensive woman who was "convinced" I had Cushing's. Guess what? I WAS RIGHT!!!!!
  11. Gracie, Thanks for posting this article. I've been following this Maryland case for a while and had not known that the jury was back on it. I am really disappointed in the verdict -- this woman clearly suffered physical and economic damages. But, as I was told when considering suing my repro endo for failing to test for Cushing's for seven years and for misdiagnosing me with PCO, proving that the standard of medical care has been breached is a difficult thing to do. Being a D- doctor doesn't do it, or so I'm told. You have to be an outright F to win. I also found the settlement discussions around $200K to be typical of a med mal settlement offer -- it's about what the defendant's insurance company would have to pay to litigate the case. Too sad....
  12. You said it, Den. I have a friend with a 9mm tumor, and I can't understand why they aren't just going in to take it out for compression reasons. I thought they did that at 1cm, but I may be imagining that....seems like a lot of risk to leave the bugger in there, eh?
  13. I love them and would definitely buy one. Just a thought: would it be helpful if the word Cushing's was somewhere at the bottom? -- or is the fact that the disease we've survived meant to open a line of dialogue (in which case, it is perfect as is!) Either way, love it, will buy it! Love, Kate
  14. Jeremie, that is probably so true. Sad, but true. Access to healthcare, access to legal services, access to education, access to jobs....it's still a big problem in this country if you are not white and male. I think it's actually suprising that so many women get diagnosed after getting dismissed by doctor after doctor dismissing the symptoms as hypochondria, depression, poor diet and lack of exercise! Y'all know this makes us among the stronger women of the world for being such great self-advocates...
  15. Hi all, I am trying to purchase the LAST LARGE blue band -- it says there is one left -- but then when I try to check out, it says that there is insufficient stock. I would like to buy this for myself as a 40th birthday present. Does anyone know if there is an extra one floating around? I can tell from the thread that no more large blue bands are getting ordered....(and I can't wear a medium).... Thanks, Kate
  16. You, Sir, are an imposter and NOT WELCOME HERE. Please understand that this is a forum for people with Cushing's Syndrome. We are NOT interested in your scam. GO AWAY!!!!

  17. http://news.yahoo.com/s/ap/20070615/ap_on_...8j0b7egc9LMWM0F Radiotherapy error could affect hundreds By MARCO CHOWN OVED, Associated Press Writer Thu Jun 14, 10:17 PM ET PARIS - Hundreds of brain cancer patients in France and perhaps others in the United States may be contacted about their radiation treatments from malfunctioning machines, which were ordered shut down by the French government after a manufacturer's warning The maker of the equipment, Brainlab of Munich, Germany, downplayed the risks and the company's founder said it involved a small targeting error that was unlikely to cause problems for patients. However, a company notification sent to a U.S. clinic warned the problem could cause "injury or death." Brainlab officials said they believed the malfunction occurred in just seven models in use worldwide. Four hospitals in France, two in the United States and one in Spain have the equipment, but the company would not name the U.S. hospitals. Brainlab would only say that U.S. government health authorities and the affected U.S. hospitals were notified. A company official said the hospitals were in Ohio and Washington state. The Cleveland Clinic confirmed that it is the Ohio hospital that uses the BrainLab machine. The hospital discontinued use of the machine after being notified of the problems last week, spokeswoman Eileen Sheil said. Martin Weinhouse, a physics expert at Cleveland Clinic, said the problem involves a small aiming error that can occur when Brainlab's Novalis system is used with another manufacturer's head frame, a ring-shaped device that circles the head and is used in delivering radiation. Weinhouse said the error involves a deviation of about 1.25 millimeters, which is similar to variations inherent in the delivery system anyway and he did not believe it would lead to serious problems. Brainlab founder and chief executive officer Stefan Vilsmeier told The Associated Press that because doctors typically allow a certain margin of error in targeting a tumor with radiation, "We don't expect any problems with the patients." A copy of the notification sent to hospitals and dated June 4, was obtained by the Associated Press. It said the malfunction meant the "patient is set to an unintended position" when receiving radiation treatment and added: "This may cause serious injury or death to the patient." The Food and Drug Administration regulates radiation therapy, but spokeswoman Julie Zawisza said the agency had no knowledge of the problem. FDA rules require that manufacturers promptly notify the agency of serious problems that could affect patient health. Dr. Georges Noel, a radiotherapy expert at the Paul Strauss cancer center in Strasbourg, said machine malfunctions were potentially harmful. "A mistargeted machine could irradiate healthy brain tissue ... It could kill healthy tissue," Noel said. Whether this would have a large or small effect on the patient depends on the part of the brain affected, he said. Some 550 Brainlab radiotherapy machines are in use worldwide ? the largest number of them in the United States. Valley Medical Center in the Seattle suburb of Renton, Wash., was notified by Brainlab on June 5 and has discontinued its use of the machine, spokesman Perry Cooper said. About 70 patients were treated with the machine in the past two years at Valley Medical, Cooper said, adding doctors were reviewing patients' records and notifying them of the defect. The hospital has not seen any problems with patients, Cooper said. In France, where there has been a rash of problems with radiotherapy, the Health Ministry this week ordered use of four of the country's eight radiotherapy machines suspended indefinitely following the warning that they were not targeting properly. All four were Brainlab models. Radiotherapy treatment involves a one-time blast by a high-energy X-Ray that is aimed from several sources and focused on one point to kill the tumor. It typically has a margin of error of 0.8 millimeters when used on brain tumors. In the malfunctioning French machines, the margin was found to have increased to 1.25 millimeters, Brainlab said in a statement. "This security margin is always used to avoid critical organs: very important parts of the brain such as those that control sight," said Dr. Christian Carrie, coordinator of radiotherapy at the Leon Berard Cancer Center in Lyon. Carrie said that with a security margin, "we cannot be sure, but we can hope" to avoid killing healthy brain tissue "even if there is a problem with the targeting of 1 millimeter." Brainlab sent out its notification after it identified a calibration error in a new machine in Spain, Vilsmeier said. That machine has not yet been used on patients. The problem was the second in France involving Brainlab machines in recent months. In April, 145 patients received an improper dose of radiation from Brainlab equipment in Toulouse in southern France. The company blamed the problem on a "calibration error" and French nuclear safety officials are investigating. Brainlab says that problem was not connected to the latest malfunction with the radiotherapy machines. Four hospitals, in Nancy, Tours, Montpellier and Paris, shut down their radiotherapy machines Monday and an analysis of the machines has begun. The hospitals have also begun tracking down all patients who may have received treatment from the malfunctioning machines, a number that may top 620, reported Le Parisien newspaper. Brainlab is offering a software update that should take care of the problem, Vilsmeier said. In 2004 and 2005, 24 patients in Epinal received as much as a 30 percent overdose of radiation while undergoing prostate cancer treatment. Four of these patients died, and their families are suing the hospitals, claiming that the deaths were a result of the overdoses. A 32 year-old woman died of complications after receiving a radiation treatment to an area 10 times the size she should have, in Lyon in 2004. In both the Epinal and Lyon incidents, hospitals blamed the problems on human error. ___ AP Medical Writer Lindsey Tanner in Chicago contributed to this report.
  18. NOT that it would help this family, per se, but my advice would be to SUE SUE SUE SUE SUE -- if only to hold his former doctors responsible for their negligence. If we keep taking a passive approach, then there will NEVER be any accountability to properly test for this disease when the symptoms are right there in front of the noses of so many prior medical professionals! I am not suggesting anything I don't plan to do myself. If my own lawsuit will force this one single repro-endo practice to more aggresively test (or at least refer out) potential Cushing's patients, then it will save lives. Literally!
  19. I know I read or heard recently that there was an article or abstract or opinion put out by two endocrinologists that up to 25% of folks with type 2 diabetes actually have some form (early, cyclical, subclinical?) form of Cushing's. If anyone knows anything about this article (or has a clue what I'm talking about -- because I apparently don't!), could you post the info here? I am beginning to do research for the documentary I'm working on.... Many thanks! Kate
  20. Ya know, I was about to wrap the Dr. Phil thread in here....but now way I would ever want to smell his stank-@$$ self!!! (sorry, I'm giving myself giggle fits over here) Seriously, this is interesting information. Wonder what the smell of male sweat does to female testosterone....? (Hearing, "Let's Get It On" in my mind...) Yep, I'm feeling better today! Kate
  21. Sue, just a note to let you know I am thinking of you and hope you are well....please keep in touch! Love, Kate

  22. See, now I just wish my local country doctors would have googled my symptoms years ago....would have saved me the loss of nearly all of my 30's to Cushing's.....(sigh) Thanks, ladies, for sharing these articles! Robin, you are like the article QUEEN!
  23. Can you tell us more about these breath tests? Is this a cortisol test? Is it done at home or in the office? Anyone else heard about this test? You know, come to think of it, my Maltese does the same thing. He sniffs my breath sometimes. Maybe I will test on those days and see if that yields some results....
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