Pituitary Surgery Twittered

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Erin Kelley's pituitary surgery was coverd by Kay Quinn from Channel 5 News in St. Louis. Here is the "play-by-play" of it, for those who couldn't see it live.

Good morning from the second floor, West pavilion at Barnes-Jewish Hospital!


I'm in the IMRI, room 217, and Erin is on the operating table. Everything looks great!


I'm going to spend the next few hours sending Twitter messages from the O.R., reporting on Erin Kelley's neurosurgery.


As we get started, let me say that out of respect for Erin and her family, should something unplanned occur, I will stop my Tweets.


Erin has Cushing's disease, which is an endocrine disorder that means her body produces too much cortisol.


These high cortisol levels in the blood can cause a host of unpleasant symptoms, from weight gain to excessive sweating to fertility trouble


Erin's Cushing's disease has been traced to a tiny tumor on her pituitary gland. She's having that tumor removed this morning.


The hope is, the removal of the tumor will reduce or eliminate her symptoms
Erin's been mostly troubled by the excessive weight gain.


She also gets sick a lot and is tired too much of the time.


Here's what I'm seeing now: Erin's draped on table, and until just a few seconds ago, her face was exposed.


She has fiducials all over her face. They allow doctors to use an MRI to get a 3-D GPS of her brain.


These little markers allow surgeons to locate her tumor exactly. The tumor is so small, it can't be seen on regular imaging.


Erin's face is covered now. Only her nose exposed. Surgeons will go in through her right nostril, through the spenoid sinus to pituitary.


Using an endoscope, they'll travel through this "tunnel" in the nose and sinus, right to the left side of her pituitary.


That's the side making too much cortisol. The tumor us called a microadenoma.


Sorry...sphenoid is correct spelling of the sinus. I'll have to brush up on my medical terminology. Sorry for the other typos.


Surgeons are now starting to insert the endoscope through the nose to access the pituitary. This process should take 30 mins.


All is well in the OR. The room is dark now. Surgeons are tracking their progress on monitors.


I just spoke with Dr. Ralph Dacey, the neurosurgeon who will remove the tumor. He says all is going well.


He also told me, what makes this operation so different from others of its kind is the MRI machine that is located right in the room.


There are only 7 or 8 hospitals in the country with this kind of MRI capability.


The advantage is that surgeons can ensure they've removed all they need in one operation.


Without this intraoperative MRI, Erin might have had to come back for a second operation if there was any tumor left behind.


Dr. Richard Chole is the otolaryngologist working on acessing the pituitary right now. Still dark in the OR.


Dr. Jim Johnston is the chief resident helping coach me through this. He says it's dark so surgeons can see the monitors better.


It helps him place the endoscope, as they make their way back to the sinus.


No music in the OR. Dr. Dacey says he doesn't like to listen to much music as he works. OK, sometimes he does.


He says the residents usually hook up and i-pod and force him to listen to U2....


Sorry again for the typos.


Dr. Dacey says not a lot of drama in the OR. Nurses and support staff are very professional. Not like TV show ER.


Dr. Dacey tells me the whole operation should take three-and-a-half hours.


Going through the nose is a new approach. Surgeons used to go up under the lip. Dacey says this technique means less post-op pain/scars


Pituitary Gland Fact: 1 to 3% of adult population has a pituitary tumor. Very common. Most have no symptoms


Dr. Chole is in the sphenoid sinus now, getting closer to pituitary.


He just took out a piece of bone in the rostrum, which is the outer shell of the sphenoid.


Pituitary Gland Fact: While tumors in the pituitary are common, only a very small number of people will develop Cushing's disease.


Amazing images on the monitor in the OR: we can see images being sent back by the small camera in Erin's sinus.


We can see Dr. Chole removing tissue as he goes deeper into the sinus.


I look very attractive in my scrubs and surgical bonnet.


I'll send a photo later. Cell phones don't work in here.


For the squeamish: This is not bloody at all. Very clean looking


I've got a Newschannel Five photographer by my side today. Joe Young is the best in the business. He's been at 5 for 25 years.


We'll shoot the operation and my Tweets and show the story sometime in May.


I'm making this sound easy, but Dr. Chole has to be very precise as he tunnels his way to the pituitary


The carotid arteries run along either side of his "tunnel," so he can't veer off course at all.


We've reached the bone that separates the sinus from the pituitary. Soon, Dr. Dacey will cut a window in that bone to get to the pituitary.


All is well, all is going as planned.


Big thanks to Dr. Jim Johnston. He's my John Madden...providing important medical background.


Barnes-Jewish, thanks for making this possible. This is an incredible opportunity


@kayquinn The tweets are great! Why the formal story delay until May? Are you waiting to add Erin's input post surgery?


I'll turn it into a longer story. Our Cover Stories are three or more minutes, so I'll get extra time to put it together


Surgeons never actually reach the brain, but they're very close. The pituitary is right behind the sinus at the base of the brain


Dr. Chole has done his work. Now Dr. Dacey will take over. First up, he'll make the window in the bone that's between sinus and pituitary


Then, he'll be able to go into the gland itself


Just to recap if you've just logged on: I'm reporting via Twitter from a Barnes-Jewish Hospital OR


Erin Kelley is having a tumor removed from her pituitary gland, a small gland behind the nasal sinus, at the base of the brain


She's hoping the operation will control or eliminate symptoms of her Cushing's disease


Temperature is very cool in here


Dr. Dacey is now working at the base of the skull. Very vascular area. Seeing a little more blood, which is normal


Just got an update from Dr. Chole, the otolaryngologist. He says Erin's tissue is more fragile because of her disease


They're going slower than normal because of this. The tissue bleeds more easily, so they're moving cautiously


Dr. Dacey is operating now. He's through the bone and didn't have to drill to get through. This is good. Less traumatic for Erin


Dr. Dacey is at the dura, the covering of the brain that also encompasses the pituitary. He'll go through that now to gland


Cushing's is named after Harvey Cushing, the father of modern neurosugeron. He did basic research on role of pituitary, how to treat it


@kayquinn Wow, the detail on the surgery is amazing. Are you in some kind of sterilized area to do the tweets??


@ahawkcollinger I'm not in a sterile area. I'm in a control room with a window into the OR


@ahawkcollinger But I do have scrubs and a surgical bonnet on! Adorable blue color


Hello to Erin's family on the 10th floor. Dr. Chole just came by to tell me where you are. All is well! Hope to catch up with you later


Dr. Dacey is putting a needle into the area where the pituitary is now to make sure it's the gland he's reached and not a blood vessel


Dr. D about to make an incision in the dura to get to the gland


Joe Young took the camera back in the OR to get more shots of the operation. He's also been shooting me in the observation room on Twitter


llama_3234I wonder what it would be like to be family of @erinmariekelley and watching the tweets of @kayquinn - nervous or relieving?


@llama_3234 Good question! Apparently, they can read our Tweets, but the hospital's system has blocked them from sending messages out. (I would find that tragic!)


Dr. Chole says they're anxious to send messages out but can't.


Dr. D has opened up the dura and is trying to visualize the pituitary gland


Apparently the gland is an orange-brownish colored gland, shaped like a Hershey's kiss. Very firm. (dr. j's description. love it!)


Dr. D is using a blunt instrument to feel around the pituitary now for any unusual tissue

The hope is that by taking the left side of the pituitary, disease symptoms will go away. Remaining right side should function normally

Dr. Dacey says he's in the pituitary and can see a milk nodule on the left hand side that he's removed and sent off to pathology

Now, he's going to remove the left portion of the gland

This is great news! Dr. D got what he was looking for!

Now waiting for lab to call back with a preliminary report on what that nodule was. Takes five days for the full report on it tho

There has been some bleeding, but Dr. Jim tells me its completely normal. Dr. D's been working around it all, which has taken some time

Not planning to do intraoperative MRI because her pre-op scans were normal

28 year old Erin Kelley, mother and wife, is having the left part of her pituitary removed to alleviate symptoms of her Cushing's

She had a tumor or nodule on it. The neurosurgeon just removed it and sent it to the lab

All happening on a second-floor operating room at Barnes-Jewish Hospital in St.Louis

Dr. Jim tells me the pituitary sits in a "web of veins" and that's why there can be bleeding during surgery

It's very normal. Also, because of all of the excess cortisol in Erin's blood stream, those veins have become very fragile

A lot of the left side of the gland is out now

Dr. D now looking at the bone fragments Dr. Chole took out. Looking at closing the "window" or hole already!

Left side of the gland completely out. Peeled it off. Tofu-like substance

Now, surgeons will take a little fat pad from the abdomen to also use to seal the hole

Dr. D placing gel foam used to minimize bleeding. This is all part of the process of finishing the operation

I'll be away from the computer for several minutes. Going to grab a quick interview. I'll be back to wrap it all up. Awesome experience!

Erin's surgery is complete! She'll leave any moment for the recovery room

Thanks to all who made this possible: Erin, BJ Hospital, KSDK. It was an incredible experience!

Funny to see all the lights on in the OR. It was dark for 99% of the operation

I'll keep you posted on when you can watch the story on Newschannel 5!

@kayquinn A lot of us "Cushies" are out of area. Will the story be online?

@cushings It will be on-line the day it airs. I'll let you know!

I added some of the questions that were asked as well.

Enjoy,

Jessica

I am glad I am sick and not you...

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Having something like Cushing's Disease is certainly easier being the patient. I don't mean in the sense that you feeling bad makes it easier. I am talking more in terms of emotional and all the baggage that comes with having it or having someone you love have a terrible illness or disease. I always told my wife that I was glad I was sick. I could never stand to see someone I love have this. I should have known fate was fickle.

Read the entire story at www.ShouldHaveSeenIt.com

Cushing's Newsletter, April 23, 2009

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In This Issue

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Podcasts

Cushing's on Facebook and Twitter

Media - Rare Care for a Rare Disease

Want to Volunteer?

Robin writes: Diagnosing and Treating Cushing's: Presentations by Dr. Theodore C. (Ted) Friedman

Clinical Trial: Women With Pituitary Problems Wanted For A Testosterone Study

Clinical Trials in Cushing’s Disease

Help Keep The Cushing's Sites Going

Endo News: Dr Ted Friedman: What is Pseudo-Cushing's ?

Endo News: Dr Ted Friedman: Why Diagnosis is Less Important in Endocrinology in the 21st Century

Endo News: How many people are aware that April 8th is National Cushings Awareness Day???

Endo News: Kanzius left hope

Endo News: MASEP gamma knife radiosurgery for secretory pituitary adenomas: experience in 347 consecutive cases

Endo News: Surgical Versus Conservative Management for Subclinical Cushing Syndrome in Adrenal Incidentalomas: A Prospective Randomized Study

Endo News: Merits and pitfalls of mifepristone in Cushing's syndrome

 

New and Updated Bios
Bios submitted after April 18 have not yet been formatted for the web.

Add or Update your bio here

Names in parens are user names on the message boards

Latest Cushing's Help Newsletter: March 12, 2009

New Bio April 18, 2009
Anne (kittiefoster)
is from San Lorenzo, California. She is not yet been diagnosed but has had multiple symptoms of Cushing's for years. She will see an endocrinologist on May 15

New Bio April 10, 2009
Debi (debkelly)
is from Palmdale, California. She is not yet diagnosed but has a lot of symptoms.

New Bio April 6, 2009
Betty (bettyd)
is from Cedar Hill, Missouri. Her daughter has been in the diagnostic process of Cushings for several months. It was also suggested that she might have "cyclic" Cushings.

New Bio April 6, 2009
Yol
is from Toronto, Canada. Her 12 year old daughter is going through Cushing's testing.

Updated Bio April 5, 2009
Beth (EFM1062)
is from King of Prussia, Pennsylvania. She is not yet diagnosed with Cushing's but she has many symptoms and is testing. She has been diagnosed with Hashimoto's hypothyroid. Beth updated her bio April 5, 2009.

New Bio April 1, 2009
Sandra (sandra b.)
is from Hammond, Louisiana. She had Cushing's in 2002 and is still affected by high cortisol levels. She had surgery to remove an adreno cortical carcinoma..

New Bio March 30, 2009
Tami (TamiinGA)
is from Calhoun, Georgia. In May of 2008 she was diagnosed with 2 tumors on her left adrenal gland. She is on her 4th endo who just recently diganosed her with Cushing's.

New Bio March 26, 2009
Lisa Lee
is from Swansea, Wales, UK. She was brought up a boy because of a rare medical condition called ‘congenital adrenal hyperplasia’ (CAH).

New Bio March 26, 2009
Jada (Jada71)
is from Baton Rouge, Louisiana. She has been diagnosed with pituitary Cushing's and has been to see Dr Ludlam. A local endo told her: "You don't have Cushing's Disease, you have psuedo- Cushing's caused by insulin resistance." Jada asked how he knew this and he replied, "Because it's too rare and too hard to diagnose."

New Bio March 25, 2009
Leslie
is from Chislehurst, Kent, United Kingdom. She was diagnosed with an adrenal tumour 15 months ago, then eventually diagnosed with Cushings and the adrenal gland and tumour were removed in July 2008. The other adrenal gland was found to be not functioning and she now hydrocortisone dependant and classified with secondary addisons. She suffers from various Cushing's problems.

Updated Bio March 24
Elisabeth (eals)
is from Nanaimo, Canada. She updated her bio after pituitary surgery with Dr. Akagami at Vancouver Regional General Hospital on March 3, 2009

New Bio March 20, 2009
Jennifer (JWOLF74)
is from Connecticut. She was diagnosed with PCOS about 10 years ago and had gastric bypass surgery 7 years ago. She is currently testing high and has been referred to a new endo.

New Bio March 16, 2009
Christina (happygirl)
is from West Point, UT. She was diagnosed March 2009 with a pituitary source of her Cushing's Disease.

New Bio March 14, 2009
cris (cris)
is from Michigan. She has finally been diagnosed with pituitary Cushing's after more than 20 years of trying to find out what's wrong. She has also been diagnosed with Hashimoto's Thyroiditis; Unstable Hypothyroidism;Hyperparathyroidism; Hypocalcemia; Severe D (hormone) deficiency; Adult GH Deficiency and Pituitary Tumor in MRI 2009.

New Bio March 12, 2009
Xchicagoan (xchicagoan
) is from Huntersville, North Carolina. She is not yet diagnosed with Cushing's but has many symptoms including Adrenal Hyperplasia and thyroid issues.

New Bio March 11, 2009
Maryanne
is from Sidney, BC, Canada (Vancouver Island). She has tumors on each adrenal gland and an MRI showed a 2 mm pituitary tumor. She is taking Ketoconazole until surgery

New Bio March 9, 2009
Jen (AuntieNoWay
) is from Seattle, WA. All it took was one blood test and she was diagnosed. I had a tumor on her left adrenal gland that was causing her left adrenal gland to over produce the hormone cortisol. She was diagnosed but they waited 2 months to get her in for surgery and during that time her weight jumped dramatically from 180Lbs to 239Lbs and she was sicker than ever.

 

New and Updated Bios

Now I know...

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..why I was told to stress dose with illness. I played hero with bronchitis and only took 5 extra here or there. Tried to fight it off with no antibiotics either. Just call me joe cool .

Felt worse than any day with Cushing's. Ended up going to urgent care last Friday and stress dosing the three days like I should have. It was a rough few days but I am feeling human again and on my normal dose.

Read the entire post at http://www.shouldhaveseenit.com

How my mind works waiting for a phone appointment

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Waiting for a phone call - anytime between 9 p.m. and 10:30 p.m. (CST). How nerve wracking, it's after 9, so probably don't have to worry for about 20 minutes at least. We aren't the first appointment for the night.
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Maybe I shouldn't of eaten that hamburger, tasted like cardboard anyway. Ten minutes later - feel a lot like I need to throw up. I have no idea what to expect from this phone appointment. And now it's almost twenty after, I'm getting more nervous.
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Maybe I won't answer the phone, then I won't know if the answers aren't what I want to hear. This, more so than any other appointment feels like it will be life changing, Whether good or bad I don't know. Depends on whether there are any diagnosis given out tonight.
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This is worse than waiting for a date to show up (back in my dating days)
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Nothing holds my attention, how many games of solitaire can I play?
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Almost 9:30, was the first appointment a twenty minute or thirty minute phone appointment? No way to know. Wish I was a long distance mind reader!!
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Maybe I'll hyperventilate instead of puking.
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I don't remember being quite this nervous before my other phone appointments. I guess I feel like more rides on this one. Bill is in pretty bad shape.
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It's 9:40, maybe I'll go to sleep and forget the whole thing!!
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Heck, I don't think I'll be able to talk anyway, I feel like I can't even breathe. Wonder if Dr. F knows how much he holds in his hands (head?)
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Geeze, my arms feel like they don't work. like not connected to my brain.
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9:50
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Wish there wasn't food commercials on TV, makes me feel ill
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10:00, maybe he won't call, maybe I don't care anymore, we can just live in limbo forever, at least I know how limbo works, Something will change with this phone call
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10:10
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Will either of the kids be re diagnosed? What if they are re diagnosed and Bill doesn't even get a first diagnosis? What if one J is diagnosed and the other isn't? How will that affect things? Why can't I just quit thinking?
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10:15, I look at the clock too often
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we always seem to be the last phone call of the night, wonder how he decides the order of the appointments?
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10:20 think I can turn off my brain? Quit thinking about when the phone will ring.
-----------------

Just read something I found through Google
Cushing’s
syndrome is a hormonal disorder caused by prolonged exposure of the body’s
tissues to high levels of the hormone cortisol. Sometimes called
hypercortisolism, Cushing’s syndrome is relatively rare and most commonly
affects adults aged 20 to 50. People who are obese and have type 2 diabetes,
along with poorly controlled blood glucose—also called blood sugar—and high
blood pressure, have an increased risk of developing the disorder.

Found it here
10:26, tired of being on pins and needles. I really might be throwing up by the time he calls! I hate this. (not saying anything bad about Dr. F, just saying I hate this all) It messes with your mind.
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10:28, I think Justin is the only one not waiting. I don't think he knows the appointment got changed and is tonight.
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10:29, okay, back to more solitaire. Does everyone feel like this when waiting for their phone appointment?
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Oh good MASH is on now. Must mean it's 10:30
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I'm feeling sick again, maybe it really isn't going to happen. It's 10:40. I know they don't run exactly on schedule but it's starting to reminded me of the time I stayed up until about midnight thinking maybe the first appointment ran very long. Found out the next morning through email, it had accidentally never been scheduled.
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10:47, maybe I really should give up hope
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10:52 - oddly I'm not even nervous anymore. I really don't think he'll call. But now I'm dissappointed. No answers this weekend. 11:00 - just checked Lynne's email again to make sure I had the date right. I did.
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11:06 - guess I'm still holding out a little hope or I wouldn't still be watching the clock. Now my arms feel like lead and like they don't want to move. I wonder how we are so lucky to have this happen twice. Now how long before I can have a phone appointment? I got moved to today (HA) because of a cancellation, so I'm sure mine that was originally scheduled for next week has been cancelled. Wonder if it's still available. Bill promised his boss he would have something (good, bad or in between) to report after tonight. Guess not. They already wonder how this can be taking so long. They just don't understand. I'm guessing he is more disappointed than I am.
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I was wrong - he called. Bill has Cushng's!!!!!!!!!!! (I knew it) Pituitary source. Also thinks he has aldosteronism. So will need surgery for both. Needs to get another CT of the abdomen. Kids need to get another MRI and send to McC. Both will start Keto and take some hydro. Need to get a baseline liver panel. Justin has been in a low lately (I think) so he needs to get an a.m. cortisol. Bill adds another bp med. I can start setting up pit surgery for Bill. With the kids we'll see what the new MRIs show. If McC sees tumor then it will probably be pit. We discussed BLAs for the kids. In the end it sounds like the type of surgery would be our choice, he wouldn't push. Too much to think about now and appointments to set up. Too bad it's not Monday morning and I could get the show on the road. I think I'm too keyed up to sleep. YES!!!!! Bill is diagnosed and the kids can go back to surgery!! Dr. F said we should ask if McC gives a family discount!!LOL

Cushing's Newsletter February 26, 2009

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In This Issue

Welcome to the latest Cushing's Newsletter!

What's Happening at the Organization?

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Podcasts

Cushing's on Facebook and Twitter

Media - Amazing Kim

Want to Volunteer?

Clinical Trial: Women With Pituitary Problems Wanted For A Testosterone Study

Clinical Trials in Cushing’s Disease

Help Keep The Cushing's Sites Going

Adult Pituitary Conference in Las Vegas

Endo News: GH replacement in patients with non-functioning pituitary adenoma (NFA) treated solely by surgery is not associated with increased risk of tumour recurrence

Endo News: Diagnosis of rare disease brings area woman hope

Endo News: Pasireotide showed promise as an effective pituitary-targeted treatment for Cushing’s disease

Endo News: Corcept Therapeutics Announces Positive Results From Study of CORLUX

Endo News: King size! Henry VIII's armour reveals he had a 52in girth - for which he paid a terrible price

Endo News: Repeated transsphenoidal pituitary surgery (TS) via the endoscopic technique: a good therapeutic option for recurrent or persistent Cushing's disease (CD)

 

 

New and Updated Bios
Note that there are still 3 more current bios to be added to this list.

Updated Bio February 22, 2009
Joselle (Jo)
is from Fredonia, New York. Although she didn't present as a typical Cushie, a doctor gave her a cortisol suppression test and she was diagnosed with a pituitary tumor. Joselle was the subject of a Live Interview in the Cushing's Help Voice Chat / Podcast series. Archives are available. Joselle was the subject of a newspaper article February 22, 2009.

New Bio February 19, 2009
Frank (franbony)
is from New York. After 2 years of know knowing what was happening, she started testing and is on the long road to finding out what is wrong.

New Bio February 18, 2009
Shawna (cushings in colorado)
is from Ft Collins, Colorado. She had robotic surgery July 19, 2007 to remove her adrenal gland. She lost 80 pounds in 5 months.

New Bio February 17, 2009
Amber (AmberC)
is from Pittsburgh, Pennsylvania. The diagnosis of Cushing's due to a pituitary adenoma was made after MRI in June of 2007. Her first surgery was in September of 2007. She is now seeking the advice of a specialist to help get pregnant and have a baby before going back for her fifth surgery!

New Bio February 16, 2009
Sandy (jsdewys)
is from Holland, Michigan. She was diagnosed with steroid-induced Cushing's and has many symptoms.

New Bio February 13, 2009
Lori (Frog)
is from Longmont, Colorado. She was diagnosed with Cushing's Syndrome in December 2008 but despite all the testing, her doctors have yet to locate the source.

New Bio February 11, 2009
Lori
is from Chester, South Dakota. She is not yet diagnosed with Cushing's but has had fibromyalgia for 6 years.

Updated Bio February 9, 2009
Heike (PeeQueen)
is from Tallahassee, Florida. Heike has decided to go through another, third, transsphenoidal surgery scheduled for August 22, 2006. Her second pituitary surgery was June 28, 2006. It was not successful and she had to choose between a bilateral adrenalectomy or stereotactic radiation. Her first surgery was in Hamburg, Germany 13 years ago and was exploratory. She developed Diabetes Insipidus after her third surgery. She has added pictures to her bio. Heike updated her bio again after starting on Synthroid for thyroid issues.

New Bio February 8, 2009
Lorrie (lorrie)
is from St Louis, Missouri. She is not yet diagnosed with Cushing's but she has had many symptoms and is testing.

New Bio February 6, 2009
Melody (Melody73)
is from California. She is a newly diagnosed Cushing's patient but she doesn't yet know the origin. She has had a pituitary MRI and is awaiting the results.

Updated Bio February 5, 2009
Coleen (EyeRishGrl)
is from Philadelphia, Pennsylvania. She has pituitary Cushing's and PCOS. Coleen updated her bio in February 2009 after her pituitary surgery. She has secondary adrenal insufficiency (Addison's disease) now.

New Bio February 3, 2009
Melesa
is from Chapleau, Canada. Her 23 year old daughter is being tested for Cushing's and she Melesa doesn't know what to expect.

New Bio February 2, 2009
Heather (HeatherKY)
is from Kentucky. In 2002, she developed a case of Bell's Palsy and was put on prednisone. In December 2008, after many years of feeling hopeless and alone, she was diagnosed with cyclical Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

New Bio February 1, 2009
Tammie (makeitgreen)
is from Hemet, California. She has been diagnosed with PCOS and has taken glucophage and clomid. She is still not feeling well and is seeking a diagnosis to help with her many symptoms. She will be the guest speaker in an interview February 26, 2009.

New Bio January 30, 2009
Michelle (Map820)
is from Brookfield, Connecticut. She is not yet diagnosed with Cushing's but she has many symptoms.

New Bio January 30, 2009
Ellen (esg31)
is from Wilmington, Delaware. Her son has been struggling for almost a year with unexplained physical and psychological symptoms. He has been tested for thyroid issues, Cushing's and pheochromocytoma.

New Bio January 28, 2009
Michele (blakeanddbrycemom)
is from Wentzville, Missouri. She has suffered from a variety of mysterious symptoms including hydrocephalus. Two MRIs show a abnormal pituitary and a meningioma.

New Bio January 27, 2009
Michelle
is from Hamilton, New Zealand. She was diagnosed with Cushings Disease when she was 21. She had a recurrence 3 years later. Her ACTH levels are high again.

New Bio January 25, 2009
Gina (ginapooh1969)
is from Franklin, Massachusetts. She isn't sure if she has Cushing's but has many symptoms and a pituitary tumor.

New Bio January 24, 2009
Sarah (saskgurl26)
is from Biggar, Saskatchewan, Canada. She was originally diagnosed with PCOS but doctors found what they thought was a prolactinoma. She was finally diagnosed with Cushing's and had pituitary surgery November 12, 2008.

New Bio January 22, 2009
Sara (SaraR)
is from Birmingham, Alabama. She is not yet diagnosed bus has been suffering from Cushing's symptoms for over 2 years.

 

New and Updated Bios

Part 2: Pituitary Patient Symposium at Swedish

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Date:   Saturday, May 9, 2009

Location:  Swedish Medical Center, Cherry Hill Campus

    550 17th Avenue

    Seattle, WA 98122

Time:   9:00 a.m. – 5:00 p.m. 
Fee:   $50 per person (Breakfast, lunch and snacks provided;

    (scholarships available)

You’re invited!

Please join us for the second annual Seattle Pituitary patient symposium, “A Patient’s Road Map to the World of Cushing’s Syndrome.” Experts from around the world will lead a day-long educational seminar and discussions focusing on Cushing’s syndrome.

There will also be opportunities for you to share your thoughts and experiences with other patients.

Register Online!
http://www2.eventsvc.com/swedishhealth?cat=Neurology

Background Information on Cushing’s

Cushing’s syndrome is a hormonal disorder caused by prolonged exposure to high levels of cortisol on the body’s tissues. Also known as hypercortisolism, Cushing’s syndrome is somewhat rare and most commonly affects adults aged 20 to 50. Cushing's disease is a form of Cushing's syndrome, caused by a hormone-secreting pituitary tumor. About 10 percent of clinically significant pituitary tumors secrete this excess hormone. This elevated hormone level in turn stimulates the adrenal glands to produce excess cortisol. This disease process is called Cushing's disease, named after the famous neurosurgeon, Harvey Cushing.

Location/Parking/Directions

http://www.swedish.org/blank.cfm?id=202

For more information: 206-386-2502

.