Pituitary Surgery Twittered


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.



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


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


In This Issue

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings


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
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
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
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

the Cushing's Partner Program is LIVE!


I’m happy to announce that the Cushing’s Partner Program is up and running on Meetup.com.

This group is for patients and survivors of Cushing’s syndrome and Cushing’s disease and is a place where patients can partner up with survivors of Cushing’s to gain an inside perspective on the recovery journey from Cushing’s. Patients who are in the early stages of diagnosis and recovery have the opportunity to partner with survivors who can share their personal insights about their recovery journey.

This group is completely virtual so people from all over the world can join without geographical restrictions. There are no physical meet ups or meetings. We meet and communicate through email and by phone.

To learn more or join this group, please visit my battle with cushing's.

Now I know...


..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