[This is the second post of a multi-post series. Part I was posted yesterday. ~Robin]
by Vivant Malgré*
What Worked
First of all, the Cushing’s community: The Cushing’s patient community is remarkable. Sure, we can be cranky bunch at times (can you say too much steroids?), but the amount of high quality information to be learned from the collective community is astonishing. In my last job, one of my employer’s specialties was implementing knowledge management systems. I was at that time skeptical. I continue to be amazed by the depth of knowledge possessed by the members of this community and how effectively it is shared. My experience is that I would be more likely to obtain accurate information and advice based on the most recent research from a long term member of the Cushing’s community than from an endocrine fellow at NIH or any of the research institutions I have been at. The Cushing’s community has pointed the way to innumerable studies, reference tools and practical experience. And for that I am wholeheartedly grateful.
The Cushing’s community also provided encouragement at critical moments. I remember one person, very early on, passing on the advice of not seeking help in a serial fashion from endos – don’t see one doc for six months, give up, see another doc for six months, move on, etc. Keep your options open until you have actual help in hand – even if it means seeing multiple doctors at the same time. That advice probably saved my life and most certainly my livelihood. Folks steered me to which doctors were helpful; which doctors were a waste of time. Sometimes I pig-headedly did not listen, to my own detriment. I have seen, more than anytime in my life, the value of a group in problem solving. Frankly, it’s been a testament to the information age to see a bunch of Midwestern housewives, some without college degrees, eat the lunch of the Harvard medical school grads. As a self-professed education snob, it’s been an eye-opener.
Second, getting to a high volume Cushing’s specialist quickly when I started to get really sick. I only saw three of the plethora of endocrinologists before actually getting my initial diagnosis of Cushing’s disease. That endocrinologist had a very organized, compressed testing regimen. He also had a practice almost exclusively limited to Cushing’s patients. My test results were consistently high, he discovered the growth hormone deficiency and he was able to cut to the chase so that I was able to document why I could not work, and therefore maintain my livelihood.
Third, sticking to my guns about what treatment I wanted. The endocrinologist who diagnosed me typically will have the patient have a second operation almost immediately after the first if initial testing doesn’t indicate that the surgery was successful. I did not feel comfortable with that. It appeared to me that if a first surgery did not work, the price of success for a second pituitary surgery was losing pituitary function. It appeared to me that radiation treatment is pretty thoroughly hated by patients. So, if the first surgery was not a success, I wanted time to figure out what was worse to me – living without a functioning pituitary or losing my adrenal glands. I did not want to be making that decision far from home under the stress of having just completed a major operation. Eventually, my decision was to be adrenally insufficient. It’s not necessarily the right answer for everyone, but I am the one who has to live with it, and so it was important to me to be comfortable that I had the opportunity to weigh the options for myself and make my own decision.
After my first surgery, I wanted my very obvious deficiency of growth hormone treated before making any decision as to whether that surgery was a failure. My local endocrinologist clearly did not want to prescribe growth hormone. He dragged his feet on tests. He twice tried to put me off agreeing to write the prescription. He had his fellow stonewall in getting the prescription approved. He dragged his feet on testing for a recurrence – and if I had listened to him, I probably would have been in kidney failure by the time he got around to paying attention. He was less than honest and far from helpful. I called him on it and then I went to a doctor who would treat me appropriately. The medication has been the difference between living in the dark and having light. I can walk. While I am sorry that I wasted nine months of my life fighting with him for treatment, I am glad that I had the sense to persevere.
Fourth, keeping my life going as much as possible and charting my progress on other fronts. I was determined to live as much of my life as possible even if I did not feel well. I bought a house. I got a dog. I passed the bar exam. I traveled -- I saw friends I had not seen in decades, I put my feet in the Pacific Ocean, visited the Grand Canyon, took in the changing leaves of a Vermont fall, and saw a lot of the country. I spent time with my family. I learned more about astronomy – including radio astronomy. I kept lists. Lists of things to do, of things to accomplish. Plans to make. I kept dreaming. When I got done with a list, I made a new list and I made sure some of the things from the old lists went to the new list, so that I always kept in mind what I had already accomplished.
Fifth, my insurance. Guardian rocks. Big time. They have messed up exactly two claims in all of this, and immediately fixed them when I called. When doctors refused to give me critical test results, they gamely sent me the bills for them and politely inquired as to whether these items should be reimbursed or not. My disability insurer has been great, as has been the Social Security Administration. Knock on wood.
Coming tomorrow: What I Have Learned Along the Way
*pseudonym
Showing posts with label pituitary surgery. Show all posts
Showing posts with label pituitary surgery. Show all posts
Wednesday, July 21, 2010
Tuesday, July 20, 2010
The Retrospective: Part I (a guest post)
[This is a multi-part series which will be posted daily the rest of this week. Robin]
by Vivant Malgré*
In my old job, when we got done with a project, our practice was to do a retrospective. What went right? What was learned along the way? What went wrong or could be done better? What would we pass on to those who might pass this way tomorrow?
A month after what appears to be a successful bilateral adrenalectomy with positive pathology (hopefully the beginning of the end of my Cushing’s “project”) this is my retrospective.
I have had Cushing’s for at least fourteen years. I know that it dates back to 1996 because I used to sew and there came a day when I could not alter a jacket to fit properly. I had this strange hump at the base of my neck and I could not find directions on how to fit it. I was a size ten but would bounce up to a size fourteen and back again. I gave up sewing.
Looking back, the next set of symptoms were probably occasioned by my adrenals being affected – I had signs of an autonomic disorder, could not keep down food at times and other digestive issues. And the beginnings of fatigue and the emotional issues that come with an HPA axis gone awry. I don’t think I was a very pleasant person.
The last round of symptoms were probably due to the loss of my growth hormone – no immune system, fatigue so bad I could not stay awake, and severe muscle weakness to the point that I could not lift a single pound through a range of motion. The worst symptom was the social isolation and apathy that comes with the loss of growth hormone. It was as if any social interaction is like the worst cocktail party you have ever been to. For someone who has always been outgoing, that was the biggest loss.
I have had pituitary surgery and a bilateral adrenalectomy. I have been on disability for more than two years and I am now facing completely rebuilding my life. I don’t know what will come back and what won’t.
In this journey, I have been seen by sixteen different endocrinologists and have visited six major research institutions. I sought treatment in seven different states. I have logged enough flying miles to circle the globe. I have about four inches of medical tests that I am gladly packing into storage, since whether those tests are “good enough” proof of Cushing’s is now a moot question. I am moving on.
Coming tomorrow: What Worked
*pseudonym
by Vivant Malgré*
In my old job, when we got done with a project, our practice was to do a retrospective. What went right? What was learned along the way? What went wrong or could be done better? What would we pass on to those who might pass this way tomorrow?
A month after what appears to be a successful bilateral adrenalectomy with positive pathology (hopefully the beginning of the end of my Cushing’s “project”) this is my retrospective.
Looking back, the next set of symptoms were probably occasioned by my adrenals being affected – I had signs of an autonomic disorder, could not keep down food at times and other digestive issues. And the beginnings of fatigue and the emotional issues that come with an HPA axis gone awry. I don’t think I was a very pleasant person.
The last round of symptoms were probably due to the loss of my growth hormone – no immune system, fatigue so bad I could not stay awake, and severe muscle weakness to the point that I could not lift a single pound through a range of motion. The worst symptom was the social isolation and apathy that comes with the loss of growth hormone. It was as if any social interaction is like the worst cocktail party you have ever been to. For someone who has always been outgoing, that was the biggest loss.
I have had pituitary surgery and a bilateral adrenalectomy. I have been on disability for more than two years and I am now facing completely rebuilding my life. I don’t know what will come back and what won’t.
In this journey, I have been seen by sixteen different endocrinologists and have visited six major research institutions. I sought treatment in seven different states. I have logged enough flying miles to circle the globe. I have about four inches of medical tests that I am gladly packing into storage, since whether those tests are “good enough” proof of Cushing’s is now a moot question. I am moving on.
Coming tomorrow: What Worked
*pseudonym
Saturday, May 16, 2009
Racial/Socioeconomic factors predictors to admission in high-quality pituitary centers
"The prevalence of clinically significant pituitary tumors has been reported to be as high as 94 +/- 19.3 cases per 100,000 population."
The authors of this study, done at the Johns Hopkins School of Medicine, reviewed a number of reports which "suggest that patients with surgical pituitary disease are much more likely to have improved surgical outcomes if diagnosed and treated by more experienced surgeons..." They looked at a national survey of neurosurgeons done in the U.S. and a similar study published in the U.K., both of which "found that complication rates were inversely related to surgical experience".
These studies showed patients undergoing the preferred method of pituitary adenoma removal, transsphenoidal resection, had lower mortality rates and less complications if admitted to "high-volume centers".
Referring to "recent reports in general surgery" which "indicate that referral to high-volume hospitals is dependent on racial and socioeconomic factors", the authors realized that little is known about the same possible disparity with the aforementioned pituitary surgery patients.
Using the data from 1988-2005 found in the National Inpatient Sample (NIS) in-hospital discharge database, they identified the pituitary tumor patients by operative code (vs. diagnostic code) for its "higher fidelity". Then, socioeconomic and environmental factors were "assessed through Area Resource File (ARF), maintained by the Health Resources and Services Administration". Only patients over 18 years of age were identified, and only those meeting the criteria of codes were included.
Centers which did over 25 pituitary surgeries per year were defined as "high-volume centers". Age, gender, race, income, wealth, insurance status and the Charlson comorbidity index score were variables used to delineate the racial and socioeconomic factors.
However, when using only the last five years (2001-2005), there was a significantly greater chance that Caucasians would admitted to high volume centers.
In this study, they also found "patients from counties with high neurosurgeon density experience a greater chance of admission to quality medical centers". Younger patients were more likely to be admitted to these same centers as compared to older patients. This was partially attributed to a "widespread access to internet in younger patients".
Females were also more likely to be admitted to high-volume centers than males. Since women are more likely to be uninsured and have less healthcare than men according to the authors, this was surprising. They surmised the need to preserve pituitary and hormonal function in women may have an active role.
What I found more telling, but only mentioned briefly, was how skewed the numbers were for those who were referred anywhere. The number of patients receiving care in the >$60,000/yr income-bracket was almost double the other income levels. In fact, the other income levels were very close.
The authors conclude: "This study demonstrates potential key policy areas for meaningful intervention to help ease disparities in access to quality care for surgical pituitary disease."
Mukherjee, D., Zaidi, H., Kosztowski, T., Chaichana, K., Salvatori, R., Chang, D., & Quinones-Hinojosa, A. (2009). Predictors of Access to Pituitary Tumor Resection in the United States, 1988-2005 European Journal of Endocrinology DOI: 10.1530/EJE-09-0043
The authors of this study, done at the Johns Hopkins School of Medicine, reviewed a number of reports which "suggest that patients with surgical pituitary disease are much more likely to have improved surgical outcomes if diagnosed and treated by more experienced surgeons..." They looked at a national survey of neurosurgeons done in the U.S. and a similar study published in the U.K., both of which "found that complication rates were inversely related to surgical experience".These studies showed patients undergoing the preferred method of pituitary adenoma removal, transsphenoidal resection, had lower mortality rates and less complications if admitted to "high-volume centers".
Referring to "recent reports in general surgery" which "indicate that referral to high-volume hospitals is dependent on racial and socioeconomic factors", the authors realized that little is known about the same possible disparity with the aforementioned pituitary surgery patients.
Using the data from 1988-2005 found in the National Inpatient Sample (NIS) in-hospital discharge database, they identified the pituitary tumor patients by operative code (vs. diagnostic code) for its "higher fidelity". Then, socioeconomic and environmental factors were "assessed through Area Resource File (ARF), maintained by the Health Resources and Services Administration". Only patients over 18 years of age were identified, and only those meeting the criteria of codes were included.
Centers which did over 25 pituitary surgeries per year were defined as "high-volume centers". Age, gender, race, income, wealth, insurance status and the Charlson comorbidity index score were variables used to delineate the racial and socioeconomic factors.
"There was no statistically significant difference between African-Americans (OR: 0.86, 95% CI: 0.74-1.00) and whites in access to high-volume centers (Table 3). On the other hand, Hispanic (OR: 0.53, 95% CI: 0.45-0.63) and Asian (OR: 0.78, 95% CI: 0.61-0.98) patients were significantly less likely to be seen at high-volume centers."
However, when using only the last five years (2001-2005), there was a significantly greater chance that Caucasians would admitted to high volume centers.
In this study, they also found "patients from counties with high neurosurgeon density experience a greater chance of admission to quality medical centers". Younger patients were more likely to be admitted to these same centers as compared to older patients. This was partially attributed to a "widespread access to internet in younger patients".
Females were also more likely to be admitted to high-volume centers than males. Since women are more likely to be uninsured and have less healthcare than men according to the authors, this was surprising. They surmised the need to preserve pituitary and hormonal function in women may have an active role.
What I found more telling, but only mentioned briefly, was how skewed the numbers were for those who were referred anywhere. The number of patients receiving care in the >$60,000/yr income-bracket was almost double the other income levels. In fact, the other income levels were very close.The authors conclude: "This study demonstrates potential key policy areas for meaningful intervention to help ease disparities in access to quality care for surgical pituitary disease."
Mukherjee, D., Zaidi, H., Kosztowski, T., Chaichana, K., Salvatori, R., Chang, D., & Quinones-Hinojosa, A. (2009). Predictors of Access to Pituitary Tumor Resection in the United States, 1988-2005 European Journal of Endocrinology DOI: 10.1530/EJE-09-0043
Wednesday, May 13, 2009
Reporter Tweets Removal of Pituitary Adenoma
A couple of weeks ago I blogged about the reporter who tweeted during a surgery to remove a pituitary adenoma, the cause of Cushing's Disease. Last night, her station ran a segment on the event and posted an article complete with uploaded video. Thanks to KSDK and Kay Quinn, the video may be viewed at their site or below:
To read more: St. Louis medical milestone: Twittering from Barnes-Jewish Hospital operating room
To read more: St. Louis medical milestone: Twittering from Barnes-Jewish Hospital operating room
Tuesday, April 28, 2009
Twittering Live! Pituitary Adenoma Removal
On Monday, 09-April-27, Erin Marie Kelley had a pituitary microadenoma removed to hopefully cure the Cushing's Disease it caused. Kay Quinn, a local reporter, was at Barnes-Jewish Hospital in St. Louis observing the whole procedure and twittering it live via the social media called Twitter. Below is the thread of her tweets in my timeline, along with a few others interspersed. I've bolded her input for easier reading.
The whole process took a little over 3.5 hours. Erin is recovering and she tweets as @erinmariekelley.
To read more about it:
St. Louis Reporter Twitters Live Surgery at Barnes-Jewish
Cushing's Help Website and Message Boards
| kayquinn (kay quinn) | Good morning from the second floor, West pavilion at Barnes-Jewish Hospital! |
| kayquinn (kay quinn) | I'm in the IMRI, room 217, and Erin is on the operating table. Everything looks great! |
| kayquinn (kay quinn) | I'm going to spend the next few hours sending Twitter messages from the O.R., reporting on Erin Kelley's neurosurgery. |
| kayquinn (kay quinn) | 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. |
| kayquinn (kay quinn) | Erin has Cushing's disease, which is an endocrine disorder that means her body produces too much cortisol. |
| kayquinn (kay quinn) | These high cortisol levels in the blood can cause a host of unpleasant symptoms, from weight gain to excessive sweating to fertility trouble |
| staticnrg (Robin) | RT @kayquinn: I'm going to spend the next few hours sending Twitter messages from the O.R., reporting on Erin Kelley's neurosurgery. |
| kayquinn (kay quinn) | Erin's Cushing's disease has been traced to a tiny tumor on her pituitary gland. She's having that tumor removed this morning. |
| kayquinn (kay quinn) | The hope is, the removal of the tumor will reduce or eliminate her symptoms. |
| marsmi (Martin) | @kayquinn is live tweeting Erin Kelley's neurosurgery at @barnesjewish. Erin has Cushing's disease. She'll halt tweets if problems arise. |
| kayquinn (kay quinn) | Erin's been mostly troubled by the excessive weight gain. |
| kayquinn (kay quinn) | She also gets sick a lot and is tired too much of the time. |
| kayquinn (kay quinn) | Here's what I'm seeing now: Erin's draped on table, and until just a few seconds ago, her face was exposed. |
| kayquinn (kay quinn) | She has fiducials all over her face. They allow doctors to use an MRI to get a 3-D GPS of her brain. |
| kayquinn (kay quinn) | These little markers allow surgeons to locate her tumor exactly. The tumor is so small, it can't be seen on regular imaging. |
| cushings (MaryO) | @staticnrg You're saving these tweets from kayquinn? I have to go to work :( |
| kayquinn (kay quinn) | Erin's face is covered now. Only her nose exposed. Surgeons will go in through her right nostril, through the spenoid sinus to pituitary. |
| kayquinn (kay quinn) | Using an endoscope, they'll travel through this "tunnel" in the nose and sinus, right to the left side of her pituitary. |
| kayquinn (kay quinn) | That's the side making too much cortisol. The tumor us called a microadenoma. |
| shygirlxoxo (anna henderson) | Watching kayquinn twitter away during a fellow Cushie's pituitary surgery! |
| kayquinn (kay quinn) | Sorry...sphenoid is correct spelling of the sinus. I'll have to brush up on my medical terminology. Sorry for the other typos. |
| cushings (MaryO) | Check out kayquinn tweeting pituitary Cushing's surgery http://www.twazzup.com/search?q=kayquinn |
| ItWasntADream (Natalie) | follow @kayquinn for a play by play of pituitary surgery on a Cushing's patient taking place right now at Barnes-Jewish Hosp! Amazing! |
| kayquinn (kay quinn) | Surgeons are now starting to insert the endoscope through the nose to access the pituitary. This process should take 30 mins. |
| EmergencyHealth (EmergencyHealth) | Following very interesting tweets from @kayquinn from the O.R. at Barnes Jewish Hospital in St. Louis |
| llama_3234 (Jessica) | follow @kayquinn this morning to watch a "play-by-play" of a pituitary surgery (same one I had last May) |
| kayquinn (kay quinn) | All is well in the OR. The room is dark now. Surgeons are tracking their progress on monitors. |
| kayquinn (kay quinn) | I just spoke with Dr. Ralph Dacey, the neurosurgeon who will remove the tumor. He says all is going well. |
| kayquinn (kay quinn) | He also told me, what makes this operation so different from others of its kind is the MRI machine that is located |
| kayquinn (kay quinn) | There are only 7 or 8 hospitals in the country with this kind of MRI capability. |
| kayquinn (kay quinn) | The advantage is that surgeons can ensure they've removed all they need in one operation. |
| kayquinn (kay quinn) | Without this intraoperative MRI, Erin might have had to come back for a second operation if there was any tumor left behind. |
| michelleimason (michelleimason) | Check out @kayquinn tweeting live from a surgery! |
| kayquinn (kay quinn) | Dr. Richard Chole is the otolaryngologist working on acessing the pituitary right now. Still dark in the OR. |
| BarnesJewish (Barnes Jewish) | KSDK @kayquinn is twittering a live nuerosurgery @barnesjewish |
| kayquinn (kay quinn) | Dr. Jim Johnston is the chief resident helping coach me through this. He says it's dark so surgeons can see the monitors better. |
| kayquinn (kay quinn) | It helps him place the endoscope, as they make their way back to the sinus. |
| kayquinn (kay quinn) | No music in the OR. Dr. Dacey says he doesn't like to listen to much music as he works. OK, sometimes he does. |
| kayquinn (kay quinn) | He says the residents usually hook up and i-pod and force him to listen to U2.... |
| kayquinn (kay quinn) | Sorry again for the typos. |
| jaelithe (jaelithe) | @kayquinn Good account you have going on. |
| kayquinn (kay quinn) | Dr. Dacey says not a lot of drama in the OR. Nurses and support staff are very professional. Not like TV show ER. |
| kemperartmuseum (Kemper Art Museu | RT @barnesjewish: KSDK @kayquinn is twittering a live neurosurgery |
| valeriehoven (valerie hoven) | RT @BarnesJewish KSDK @kayquinn is twittering a live nuerosurgery @barnesjewish [hehe i just retweeted my own tweet] |
| kayquinn (kay quinn) | Dr. Dacey tells me the whole operation should take three-and-a-half hours. |
| kayquinn (kay quinn) | 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 |
| kayquinn (kay quinn) | Pituitary Gland Fact: 1 to 3% of adult population has a pituitary tumor. Very common. Most have no symptoms. |
| kayquinn (kay quinn) | Dr. Chole is in the sphenoid sinus now, getting closer to pituitary. |
| kayquinn (kay quinn) | He just took out a piece of bone in the rostrum, which is the outer shell of the sphenoid. |
| kayquinn (kay quinn) | Pituitary Gland Fact: While tumors in the pituitary are common, only a very small number of people will develop Cushing's disease. |
| kayquinn (kay quinn) | Amazing images on the monitor in the OR: we can see images being sent back by the small camera in Erin's |
| kayquinn (kay quinn) | We can see Dr. Chole removing tissue as he goes deeper into the sinus. |
| kayquinn (kay quinn) | I look very attractive in my scrubs and surgical bonnet. |
| kayquinn (kay quinn) | I'll send a photo later. Cell phones don't work in here. |
| kayquinn (kay quinn) | For the squeamish: This is not bloody at all. Very clean looking. |
| advantechmedia (advantechmedia) | @kayquinn thanks for sharing, we do a lot of work for science publishers and all of this sound familiar although we're not doctors |
| kayquinn (kay quinn) | 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. |
| kayquinn (kay quinn) | We'll shoot the operation and my Tweets and show the story sometime in May. |
| kayquinn (kay quinn) | @advantechmedia Glad you're following! |
| kayquinn (kay quinn) | @valeriehoven Thanks for the follow. |
| clairecg (Claire Goldfarb) | Very cool....RT @michelleimason: Check out @kayquinn tweeting live from a surgery! |
| kayquinn (kay quinn) | I'm making this sound easy, but Dr. Chole has to be very precise as he tunnels his way to the pituitary. |
| kayquinn (kay quinn) | The carotid arteries run along either side of his "tunnel," so he can't veer off course at all. |
| kayquinn (kay quinn) | 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. |
| kayquinn (kay quinn) | All is well, all is going as planned. |
| ScrubsAndBeyond (Scrubs & Beyond) | @kayquinn Will you be wearing them on-air? |
| kayquinn (kay quinn) | Big thanks to Dr. Jim Johnston. He's my John Madden...providing important medical background. |
| kayquinn (kay quinn) | Barnes-Jewish, thanks for making this possible. This is an incredible opportunity. |
| kayquinn (kay quinn) | @lzigman Oh, Leisa, I'm so sorry! I had a vicious turn-around this morning. At Barnes by 8:30 after working late last night. |
| marsmi (Martin) | @kayquinn The tweets are great! Why the formal story delay until May? Are you waiting to add Erin's input post surgery? |
| kayquinn (kay quinn) | @ScrubsAndBeyond Uh, no. |
| lzigman (lzigman) | @kayquinn-no worries... |
| kayquinn (kay quinn) | @marsmi 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. |
| kayquinn (kay quinn) | @WthrmnSlaughter Keep up the great work Anthony! |
| kayquinn (kay quinn) | Surgeons never actually reach the brain, but they're very close. The pituitary is right behind the sinus at the base of the brain. |
| annmarierussell (Ann-Marie Russell) | @kayquinn I know many of us (Erin's friends and family) are following you today, thanks for doing this. |
| staticnrg (Robin) | Thanks to @llama_3234 there is a great "twazzup" for the pituitary surgery of @erinmariekelley covered by @kayquinn http://bit.ly/W9rnx |
| kayquinn (kay quinn) | 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. |
| kayquinn (kay quinn) | Then, he'll be able to go into the gland itself. |
| kayquinn (kay quinn) | @annmarierussell Thank you all for allowing us in! She's doing great! It's really amazing. |
| WthrmnSlaughter (Anthony Slaughter) | @kayquinn just trying to keep up with you! If anyone's the tweet master, it's you!!!! |
| staticnrg (Robin) | RT @cushings: Check out kayquinn tweeting pituitary Cushing's surgery http://www.twazzup.com/search?q=kayquinn |
| llama_3234 (Jessica) | @kayquinn Thank you for doing this. This can really raise some awareness of Cushing's (from one of Erin's fellow Cushie buddies) |
| kayquinn (kay quinn) | Just to recap if you've just logged on: I'm reporting via Twitter from a Barnes-Jewish Hospital OR. |
| kayquinn (kay quinn) | Erin Kelley is having a tumor removed from her pituitary gland, a small gland behind the nasal sinus, at the base of the brain. |
| staticnrg (Robin) | RT @llama_3234: @kayquinn Thank you for doing this. This can really raise some awareness of Cushing's Amen...from another Cushie buddy. |
| ItWasntADream (Natalie) | skull base pituitary surgery to remove tumor at Barnes-Jewish hosp. tweeted live by @kayquinn now. Good luck to patient @erinmariekelley! |
| kayquinn (kay quinn) | She's hoping the operation will control or eliminate symptoms of her Cushing's disease. |
| marsmi (Martin) | The @barnesjewish surgery @kayquinn is covering is on @erinmariekelley. |
| kayquinn (kay quinn) | Temperature is very cool in here. |
| kayquinn (kay quinn) | Dr. Dacey is now working at the base of the skull. Very vascular area. Seeing a little more blood, which is normal. |
| isserman (David Isserman) | Wow, TV news anchor - @kayquinn - is Tweeting about a surgery going on right now. This may be a first for Twitter. |
| llama_3234 (Jessica) | @erinmariekelley is practically a celebrity with @kayquinn tweeting her surgery=). |
| cushings (MaryO) | I put a link on the top of the boards, too... pituitary Cushing's surgery http://www.twazzup.com/search?q=kayquinn |
| ItWasntADream (Natalie) | @kayquinn if any would like more information about Cushing's Disease they can visit www.cushings-help.com |
| cushings (MaryO) | Many thanks to @kayquinn for doing this. It will really help with Cushing's awareness and pituitary, too! |
| ItWasntADream (Natalie) | follow entire thread on twazzup RT @cushings: Check kayquinn tweeting pituitary Cushing's surgery http://www.twazzup.com/search?q=kayquinn |
| chzmongerswife (CheesemongersWife) | @kayquinn jim is the best. Super nice guy |
| kayquinn (kay quinn) | Just got an update from Dr. Chole, the otolaryngologist. He says Erin's tissue is more fragile because of her disease. |
| kayquinn (kay quinn) | They're going slower than normal because of this. The tissue bleeds more easily, so they're moving cautiously. |
| kayquinn (kay quinn) | 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. |
| kayquinn (kay quinn) | Dr. Dacey is at the dura, the covering of the brain that also encompasses the pituitary. He'll go through that now to gland. |
| ScrubsAndBeyond (Scrubs & Beyond) | @kayquinn Well, not on-air (obviously), but maybe in a news segment? Just wanted to encourage local viewers to tune-in if so. |
| llama_3234 (Jessica) | @kayquinn Yep that's very common with most Cushing's patients. That's one of the reasons why you want to have an experienced neurosurgeon. |
| kayquinn (kay quinn) | Cushing's is named after Harvey Cushing, the father of modern neurosugeron. He did basic research on role of pituitary, how to treat it. |
| sahah86 (sahah86) | @kayquinn while I was taking photos, a strange noise (maybe scraping?) was happening in the OR. |
| kayquinn (kay quinn) | @cushings It's a privilege to do it! |
| kayquinn (kay quinn) | @ScrubsAndBeyond I'll find out and let you know. Not a decision I get to make. :) |
| debdobson (DebDobson) | @kayquinn Wow, you are doing a great job tweeting this surgery. |
| kayquinn (kay quinn) | @isserman Hi David. There've been others before this. But not many! |
| isserman (David Isserman) | @kayquinn - I just added a link to your Twitter on the Cushing's Syndrome community on RareShare - http://tinyurl.com/ch8v52 |
| kayquinn (kay quinn) | @debdobson Thanks for the kind words! |
| ahawkcollinger (ahawkcollinger) | @kayquinn Wow, the detail on the surgery is amazing. Are you in some kind of sterilized area to do the tweets?? |
| kayquinn (kay quinn) | @ahawkcollinger I'm not in a sterile area. I'm in a control room with a window into the OR. |
| kayquinn (kay quinn) | @ahawkcollinger But I do have scrubs and a surgical bonnet on! Adorable blue color. |
| kayquinn (kay quinn) | @isserman Thanks David! |
| cushings (MaryO) | @kayquinn Cushing's community members can discuss this surgery here http://cushings.invisionzone.com/index.php?showtopic=40930 |
| kayquinn (kay quinn) | 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. |
| llama_3234 (Jessica) | I wonder what it would be like to be family of @erinmariekelley and watching the tweets of @kayquinn - nervous or relieving? |
| kayquinn (kay quinn) | 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. |
| kayquinn (kay quinn) | Dr. D about to make an incision in the dura to get to the gland. |
| kayquinn (kay quinn) | 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 |
| kayquinn (kay quinn) | @llama_3234 Good question! Apparently, they can read our Tweets, but the hospital's system has blocked them from sending messages out. |
| kayquinn (kay quinn) | Dr. Chole says they're anxious to send messages out but can't. |
| ItWasntADream (Natalie) | @llama re: family feelings about surgery tweets by @kayquinn.i think relieving, 3-4hrs is a long time to wait, helps to know whats going on. |
| kayquinn (kay quinn) | Dr. D has opened up the dura and is trying to visualize the pituitary gland. |
| kayquinn (kay quinn) | Apparently the gland is an orange-brownish colored gland, shaped like a Hershey's kiss. Very firm. (dr. j's description. love it!) |
| kayquinn (kay quinn) | Dr. D is using a blunt instrument to feel around the pituitary now for any unusual tissue. |
| kayquinn (kay quinn) | The hope is that by taking the left side of the pituitary, disease symptoms will go away. Remaining right side should function normally. |
| BillRomer (Bill Romer) | #STL local NBC anchor/reporter @kayquinn is tweeting from the operating room viewing area while watching brain surgery! |
| mykscholze (mykscholze) | > @BillRomer: #STL local NBC anchor/reporter @kayquinn is tweeting from the operating room viewing area while watching brain surgery! |
| eddherwig (edward herwig) | @kayquinn |
| kayquinn (kay quinn) | 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. |
| kayquinn (kay quinn) | Now, he's going to remove the left portion of the gland. |
| kayquinn (kay quinn) | This is great news! Dr. D got what he was looking for! |
| kayquinn (kay quinn) | 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. |
| cushings (MaryO) | #kayquinn Follow Erin's pituitary Cushing's surgery Live! http://ping.fm/OWQ3S |
| supportsurfaces (Chuck Beye) | rt@kayquinn This is awesome. |
| kayquinn (kay quinn) | 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. |
| RPMaus (Ryan Maus) | STL TV reporter @kayquinn is Tweeting from some kind of surgery... Bizarre |
| cushings (MaryO) | @kayquinn great news!!! |
| kayquinn (kay quinn) | Not planning to do intraoperative MRI because her pre-op scans were normal. |
| kayquinn (kay quinn) | @RPMaus 28 year old Erin Kelley, mother and wife, is having the left part of her pituitary removed to alleviate symptoms of her Cushing's. |
| kayquinn (kay quinn) | @RPMaus She had a tumor or nodule on it. The neurosurgeon just removed it and sent it to the lab. |
| kayquinn (kay quinn) | @RPMaus All happening on a second-floor operating room at Barnes-Jewish Hospital in St.Louis |
| kayquinn (kay quinn) | Dr. Jim tells me the pituitary sits in a "web of veins" and that's why there can be bleeding during surgery. |
| kayquinn (kay quinn) | It's very normal. Also, because of all of the excess cortisol in Erin's blood stream, those veins have become very fragile. |
| kayquinn (kay quinn) | A lot of the left side of the gland is out now. |
| kayquinn (kay quinn) | Dr. D now looking at the bone fragments Dr. Chole took out. Looking at closing the "window" or hole already! |
| kayquinn (kay quinn) | Left side of the gland completely out. Peeled it off. Tofu-like substance. |
| kayquinn (kay quinn) | Now, surgeons will take a little fat pad from the abdomen to also use to seal the hole. |
| brianarygg (Briana Rygg ) | RT @RPMaus: STL TV reporter @kayquinn is Tweeting from some kind of surgery... Bizarre |
| llama_3234 (Jessica) | @kayquinn Usually this is done because of a CSF leak, is that what happened here, or do you know? |
| kayquinn (kay quinn) | Dr. D placing gel foam used to minimize bleeding. This is all part of the process of finishing the operation. |
| kayquinn (kay quinn) | 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! |
| supportsurfaces (Chuck Beye) | @kayquinn Ask Dr D what kinfd of pad is on the OR table. I provide BJC with the Roho pads. |
| RPMaus (Ryan Maus) | @kayquinn Wow, sounds really interesting! Cool thing to Tweet... What has the response been like so far? |
| kayquinn (kay quinn) | Erin's surgery is complete! She'll leave any moment for the recovery room. |
| kayquinn (kay quinn) | Thanks to all who made this possible: Erin, BJ Hospital, KSDK. It was an incredible experience! |
| cushings (MaryO) | RT @cushings: @kayquinn Cushing's community members discuss this surgery here http://cushings.invisionzone.com/index.php?showtopic=40930 |
| kayquinn (kay quinn) | Funny to see all the lights on in the OR. It was dark for 99% of the operation. |
| kayquinn (kay quinn) | I'll keep you posted on when you can watch the story on Newschannel 5! |
| kayquinn (kay quinn) | @RPMaus Response has been great! Lots of interest! |
| agoodeye (lisa jennings) | @kayquinn That's good to know. Is she a friend or someone you're covering for KSDK? |
| kayquinn (kay quinn) | @llama_3234 Erin has Cushing's disease and docs think the tumor on her pituitary was causing it and all of her symptoms. |
| cushings (MaryO) | Great news! Thanks for the tweets. @kayquinn Erin's surgery is complete! She'll leave any moment for the recovery room. |
| ItWasntADream (Natalie) | @kayquinn Thanks Kay! Can't wait to see the story. Hoping for a quick recovery for @erinmariekelley. |
| kayquinn (kay quinn) | @supportsurfaces It's not a Roho pad. Just a foam rubber egg crate. |
| cushings (MaryO) | @kayquinn A lot of us "Cushies" are out of area. Will the story be online? |
| kayquinn (kay quinn) | @cushings It will be on-line the day it airs. I'll let you know! |
| cushings (MaryO) | @kayquinn Fantastic! Thanks |
| cushings (MaryO) | @kayquinn Thanks again for doing this. Lots of Cushing's patients are following this story. Thanks to @erinmariekelley for sharing, too! |
| llama_3234 (Jessica) | @kayquinn right I have/had it, but when a fat patch is used in a pit surgery it is because of a CSF leak, jw if that was the case here |
| kholleman (kholleman) | Just got done with KayQuinn Twittering brain surgery. Terrific experience. They went through the nose to get to the pituitary glad. |
| supportsurfaces (Chuck Beye) | rt @kayquinn Thanks for thi info. How long was the patient on the table, |
| cushings (MaryO) | Check out kayquinn tweeting Erin's cushing's pituitary surgery! http://www.twazzup.com/search?q=kayquinn |
| kayquinn (kay quinn) | @llama_3234 The fat pad was to ensure there would be no leak. But surgeons said they didn't detect csf on the table. |
| kayquinn (kay quinn) | @supportsurfaces Five hours or so. |
| kayquinn (kay quinn) | @cushings Thanks for following me! I was honored to do it. |
| valeriehoven (valerie hoven) | @erinmariekelley congrats on a successful surgery @barnesjewish (covered by @kayquinn via twitter) |
| kayquinn (kay quinn) | @agoodeye No, just a internet saavy patient who has been blogging about her disease and was excited I would Twitter from the OR. |
| kayquinn (kay quinn) | @agoodeye It was actually the hospital's idea. |
| debdobson (DebDobson) | @kayquinn You are welcome. |
| supportsurfaces (Chuck Beye) | @kayquinn Thank you. |
| valeriehoven (valerie hoven) | RT @RPMaus STL TV reporter @kayquinn is Tweeting from some kind of surgery... Bizarre |
| supportsurfaces (Chuck Beye) | @kayquinn @barnes-jewish Just read throuh all tweets. It was fascinating. Thanks |
| BarnesJewish (Barnes Jewish) | KSDK's Kay Quinn's "Tweets" of the live neurosurgery are complete and can be read @ kayquinn |
| BarnesJewish (Barnes Jewish) | KSDK's Kay Quinn's "Tweets" of the live neurosurgery are complete and can be read @kayquinn |
| stephaniethum (Stephanie Thum) | A St. Louis TV reporter Tweeted from a live surgery today at @BarnesJewish. Follow @kayquinn to see the Tweets. #hcsm |
| Tojosan (Todd R Jordan) | #STL local NBC anchor/reporter @kayquinn is tweeting from the operating room viewing area while watching brain surgery! (via @BillRomer) |
| BarnesJewish (Barnes Jewish) | Complete chronology of kayquinn tweets from the OR http://cushingshelp.blogspot.com/2009/04/pituitary-cushing-surgery-twittered.html |
| ImBFC (Belinda) | @kayquinn cool Twitter stream! I learned a lot and I'm looking forward to seeing your story. Best wishes to Erin in her recovery :-) |
| CAMURPHY (Craig Murphy) | @kayquinn excellent tweets yesterday; amazed that they are able to go after something so small-my wife's tumour was the size of a fingernail |
| CAMURPHY (Craig Murphy) | http://url.ie/1i6o @kayquinn coverage of @erinmariekelley operation - similar to my wife's treatment - amazing what can be done these days |
| kayquinn (kay quinn) | @CAMURPHY Thanks for the Tweet! It was very exciting, and I'm glad you would follow along. |
| kayquinn (kay quinn) | @staticnrg Thanks for the Tweet and thanks for following the surgery. It was amazing! |
The whole process took a little over 3.5 hours. Erin is recovering and she tweets as @erinmariekelley.
To read more about it:
St. Louis Reporter Twitters Live Surgery at Barnes-Jewish
Cushing's Help Website and Message Boards
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