Tumor Willis & any Annoying Sister-- BE GONE

04-20-2011. Surgery schedule. 2nd pituitary surgery.

MD Anderson Cancer Center with IMCC (neurosurgeon Ian McCutcheon)

********* 3:00 am. i wake up, shower, last minute packing

4:15 am. I leave house to go to hospital 5:15 am. I report to admissions; prepped for surgery. 7:30 am. Surgery begins. Neurosurgeon starts real work. Surgery will take 3.5-4 hours. 11:30a-12:30 p. Neurosurgeon comes out to talk to family, once he knows I am stable and ok in recovery. I will be in recovery for 3-5 hrs until they release me. 4-6 pm. If ok, i'll be released to my private patient room. I am tired but extremely calm. I was at MD anderson today from 8:30 am to 4:45 pm. However, I've been waiting for this second surgery since October 2009. It is time. I don't know how I lasted 18 more months with this blasted disease! I am ready.

Gonna try to squeak out 4 hours of sleep.
Good night, everyone!
See you on the other side of Cushing's.

P.S. Please forgive typos. I'm exhausted.

CUSHING'S AWARENESS: *Again*

Well, it's that time again. I am three days away from my second pituitary surgery. Let's hope the neurosurgeon gets all the trouble maker tumor cells this time.

Ever on the quest to ensure the world knows about the dreadful Cushing's disease, I am reposting Pituitary Surgery FAQs.  Same surgery. Same doctor.  This time, we are going after the tumor on the right side of the pituitary and cleaning the edges of the tumor that was removed on the left side in June 2009.

A Glimpse of Cushings.. by the numbers!

Thanks to Beth for creating this poll for us!
 A Glimpse of Cushings.. by the numbers!
by Beth Grant on Friday, April 8, 2011 at 9:38pm

I created a web-poll about 'The Face of Cushings' and had 55 of my fellow Cushies respond anonymously. The poll is still available to respond to as well, but here's the current statistics as of April 8th, 2011 - Cushings Awareness Day!

The first number after each response is the number out of 55 people who chose each response, then it's followed by the total percentage. I did forget to include some possible responses, so the poll cannot be viewed as 100% accurate, however this should give you a better picture of what we all are dealing with on a larger scale.

Please feel free to share this so more people can see some of what we deal with and perhaps raising awareness will help other people get closer to a diagnosis and faster treatment so nobody has to suffer like I have.

Thank you to all those who responded to my poll and who help to spread the word, and of course thank you to those who help support me!

-Beth
~~~

Question 1*Have you been diagnosed with Cushings?
Yes  Yes   47   85%
No   2   4% 
Currently Testing   6   11%

Question 2*How long have you had symptoms for?
0-1 year   0   0%
1-2 years   1  2% 
2-4 years   3    5% 
4-6 years   8   15% 
6-10 years   9   16%  
10+ years   34   62%

Question 3*Were you diagnosed with:
Cushings Disease - pituitary   35   64%
Cushings Syndrome - adrenal   7   13% 
Cushings Syndrome - ectopic   0   0% 
Cushings Syndrome - cyclical   6   11% 
Cushings Syndrome - drug induced   0   0% 
Undiagnosed   7   13%

Question 4*How old were you when you first started experiencing symptoms:
15 or younger   15   27% 
16-20 years old   7   13% 
21-25 years old   9   16% 
26-35 years old   12   22% 
36-40 years old   7   13% 
41-50 years old   4   7% 
50+ years old   1   2%

Question 5*How old are you now?
15 years old or younger   0   0% 
15-20 years old   2   4% 
21-25 years old   3   5% 
26-30 years old   5   9% 
31-35 years old   10   18% 
36-40 years old   11   20% 
41-45 years old   6   11% 
46-50 years old   4   7% 
50+ years old   14   25%

Question 6*How long did it take for you to be diagnosed?
Less than 1 year   7   13% 
1-2 years   9   16% 
2-3 years   6   11% 
3-5 years   8   15% 
5-10 years   9   16% 
10+ years   8   15% 
Undiagnosed   8   15%

Question 7*How many doctors did you see before you were diagnosed?
1   5  9% 
2   2   4% 
3   4   7% 
4   7   13% 
5+   30   55% 
Undiagnosed   7   13%

Question 8*Which of the following did you get?
High blood pressure   22   40%  
Diabetes   2   4% 
Both   19   35% 
Neither   12  22%

Question 9*What symptoms have you experienced/are experiencing?
Weight Gain   55   6% 
High Blood Pressure   42   4% 
High Blood Sugar   28   3% 
Extra Hair Growth   46   5% 
Hair Loss   42   4%
Bone Loss/Broken Bones   28   3% 
Muscle Loss/Weakness   55   6% 
Fatigue   53   6% 
Loss of Menses   33   4% 
Stretch Marks   46   5% 
Flushed Red Skin   42   4% 
Buffalo Hump   47   5%
Swelling   48   5%  
Hot Flashes/Sweating   49   5% 
Sleep Disturbances   53   6% 
Vision Problems   37   4% 
Acne   34   4%
Bruising   42   4% 
Body Odor   30   3% 
Anxiety   46   5% 
Depression   44   5% 
Infertility   13   1% 
Other   21

Question 10*What do you think has been the WORST symptom you've had to deal with?
Weight Gain   26   47% 
High Blood Pressure   0   0% 
High Blood Sugar   1   2% 
Extra Hair Growth   0   0% 
Hair Loss   0   0%
Bone Loss/Broken Bones   1  2% 
Muscle Loss/Weakness   6   11% 
Fatigue   10   18% 
Loss of Menses   0   0% 
Stretch Marks   0   0% 
Flushed Red Skin   0   0% 
Buffalo Hump   0   0% 
Swelling   0   0% 
Hot Flashes/Sweating   0   0% 
Sleep Disturbances   2   4% 
Vision Problems   0   0% 
Acne   0   0% 
Bruising   0   0% 
Body Odor   0   0% 
Anxiety   1   2% 
Depression   3   5% 
Infertility   0   0% 
Other   5   9%

Question 11*How much weight did you gain?
0-50 lbs/0-22 kg   7   13% 
51-100 lbs/23-45 kg   20   36% 
101-150 lbs/46-68 kg   17   31% 
151-200 lbs/69-90 kg   8   15% 
200+ lbs/91+ kg   3   5%

Question 12*When do you get your best sleep?
Between 10pm - 6am   17   31% 
Between 6am - 2pm   23   42% 
Between 2pm - 10pm   7   13% 
None of the above I'm awake all the time!   8   15%

Question 13*Have you had any complications in other systems of your body that may or may not be Cushings related?
Oral   13   7% 
Gastrointestinal   33   19% 
Heart   19   11% 
Thyroid   28   16% 
Circulatory   14   8% 
Nervous System   11   6% 
Mental Health   28   16% 
Learning   16   9% 
Other   9   5% 
None of the Above   3   2%

Question 14*What testing did you have leading to a diagnosis of Cushings?
AM/PM cortisol blood draw   40  13% 
24hr UFC   50   16% 
10hr UFC   16   5% 
11pm/midnight saliva   33   10% 
High/Low Dex test   42   13% 
IPSS   13   4% 
ACTH Stim test   17   5% 
CRH Stim test   10   3% 
Head MRI/CT   49   16% 
Adrenal MRI/CT   26   8% 
Chest X-ray   12   4% 
Other   8   3%

Question 15*Which was the worst test you had to have?
AM/PM cortisol blood draw   3   5% 
24hr UFC   8   15% 
10hr UFC   0   0% 
11pm/midnight saliva   1   2% 
High/Low Dex test   6   11% 
IPSS   8   15% 
ACTH Stim test   0   0% 
CRH Stim test   2   4% 
Head MRI/CT   12   22% 
Adrenal MRI/CT   4   7% 
Chest X-ray   0   0%
Other   11   20%

Question 16*Are you currently:
Working   19   35% 
Going to school   3   5% 
Working AND going to school   2   4% 
Was working and had to quit   23   42% 
Was going to school and had to quit   0   0% 
Working and going to school and had to quit   2   4% 
Retired   2   4%   Never worked   4   7%

Question 17*What treatments have you had?
Unilateral adrenalectomy   4   4% 
Bilateral adrenalectomy   13   13% 
Transsphenoidal tumor removal   35   35% 
Gamma Knife Surgery or similar   4   4%
Daily radiation for a period of time   1   1% 
Ketoconazole   21   21% 
Metyrapone   2   2% 
Mitotane   0   0% 
Cabergoline   1   1% 
Cessation of steroid use   1   1% 
Homeopathic   7   7% 
Other   2   2%
Have not been treated yet   10  10%

Question 18*Were you able to be treated locally or did you have to travel?
All treatment was local   11   20% 
Some treatment local traveled for other   18   33% 
Had to travel for all treatment   18   33%
Have not been treated yet   8   15%

Question 19*Has your treatment been successful?
Yes I am in remission   18   33% 
No I am still sick   10   18% 
No I am still sick and I am testing again   4   7% 
No I have had a recurrence treated again in remission   3   5% 
No I have had a recurrence treated again still sick   9   16% 

Have not been treated yet   11   20%
 

Cushie Warriors

CUSHIE WARRIORS: MEN, WOMEN & CHILDREN WHO BATTLE CUSHING’S NUMEROUS TIMES IN HOPES OF WINNING THE WAR

Many of you only know one person with Cushing’s.  It is difficult to understand or keep up with ‘your person’ as s/he seeks treatment.  You have probably never known someone with Cushing’s before, right?  You do know, however, that ‘your person’ talks about Cushing’s a lot or is pretty darned passionate about their Cushie friends.

You see, for us, we know MANY people with Cushing’s through Cushings-help.com website. Cushing’s is a house guest who ruins our lives and won’t leave us alone. We lean on and help others even as we struggle to find our way through complicated testing, surgery (-ies), and hopefully, cures. We Cushies all find it incredibly frustrating to have hit the many walls. We see it every day: patients insulted, dismissed, and defeated.  When it happens to us, we are often rendered speechless.  When we see our fellow Cushies meet the same poor medical treatment, we become incensed.  Ultimately, we know our bodies best, and we are found to be correct. We know when we have a disease as devastating as Cushing’s.

For Cushing’s Awareness Day, we compiled this list of Cushing’s patients from all over the world who are fighting Cushing’s and seek treatment and a cure through multiple surgical procedures and even radiation. A glossary of terms is located at the bottom of the list.

Every patient wants to be understood, supported, and cared for.  We want you to know that we are one of many who suffer from this ‘rare’ albeit rarely diagnosed disease.

Today, the Cushing community stands before you, asking you to recognize us for the struggles we face and for you to be the most supportive and caring friend or family member you can be to ‘your person.’

(NOTE: This is only a sample collected through a short time on the Cushing’s messages boards. There are many, many more patients like us).

1. Melissa, Texas.
   Pituitary surgery #1: June 2009.
   Pituitary surgery # 2: soon in April 2011.
2. Sarah, Oregon.
   Pituitary surgery #1: Nov 2009.
   Pituitary surgery #2: March 2010.
   Pituitary Surgery #3: Sept 2010.
   BLA: April 2011.
3. Alex B, California
   Pituitary surgery March 2008
   BLA July 2009.
4. Krystine T, Washington
   1st failed Pituitary surgery March 1996
   2nd failed Pituitary surgery Dec 2002
   BLA Dec 2004
   3rd failed Pituitary surgery Sept 2009
   MEGA ONE DAY Radiation ZAP Aug 2010
5. Jill, Denver, Colorado
   left adrenalectomy Nov 2006
   right adrenalectomy Feb 2008
6. Karen, Hinesburg,Vermont
   1st Pituitary surgery in Portland OR, January 9,2006. Not successful.
   2nd Pituitary surgery in Seattle Washington July 9, 2007.
   CSF leak July 13, 2007.  I'm in remission.
7. Christy, Oklahoma. 
   Pituitary surgery 9-2004 Oklahoma City
   BLA 11-2004 Oklahoma City
   Rest Tissue PIT 9-2006 Pittsburgh
   CSF leak repair with titanium after the last pituitary surgery and it was removed 5-2009.
8. Beth, Winnipeg, Manitoba, Canada.
   Gamma knife December 2006 and again December 2008.  Still broken, and if the tumor grows more (it's been stable for a bit now), I'll likely be headed for a 3rd time!
9. Justin K., Kansas
   Pituitary surgery, May 19, 2008.
   BLA, May 6, 2009.
10. Jessica K., Kansas.
    Pituitary surgery, May 16, 2008.
    BLA, May 6, 2009.
11. Bill K., Kansas.
    Pituitary surgery, August 14, 2009.
    BLA, June 2, 2010.
12. Danielle, Massachusetts.
    Pituitary Surgery #1 Dec 16, 2009.
    Pituitary Surgery #2 February 11, 2010.
    BLA Sep 2, 2010
13. Trisha T, Tampa FL
    Pituitary surgery 4/07
    Currently trying to avoid BLA with various meds.
14. Cindy W, Kentucky.
    Pituitary Surgery 11-5-07
    BLA 03-07-08
    CSF Leak repair 10-28-08
15. Lisa, Illinois.
    Pituitary Surgery 5-30-08
    BLA 11-4-09
    Still not cured.
16. Susan G.
    Pituitary Surgery 7/07
    Cleared for 2nd pituitary surgery 10/10.
17. Kimberly, Illinois.
    Pituitary Surgery 11-2-2009
    BLA 2-2-2011.
18. Debra, Virginia
    Debra v. Gallbladder due to Cushings, 1/2005
    root canal due to broken tooth 8/2008
    Pituitary surgery 10/2008
    BLA  6/2010
    Sinus/leak repair 1/2011
    Surgeries offered and rejected == repair of foot muscles, lap band surgery; surgery for excess stomach acid
19. Lisa O, Washington State
    3/25/2009-pituitary surgery
    5/13/2010-BLA
20. April, KY.
    Unsuccessful pituitary surgery 1/15/10.
    Testing again.
21. Elizabeth J, KY
    Pituitary Surgery 7-2-2009
    BLA Sept. 15, 2010
22. Trisha S, Indiana
    Pituitary surgery 11/13/2008.
    Not cured - retesting.
23. Lynne R, Oxford, England.
    Pituitary surgery April 2008
    CSF leak repairs: April 2008, May 2008, May 2008 (3 leaks in the space of 5 weeks), with meningitis as a result of the leaks.
    Issues due to pituitary gland removal: crohns disease, pernicious anaemia, life dependent on multiple medications [hydrocortisone, ddavp, thyroxine, hrt, growth hormone, colestyramine, Vit B12 injections etc, etc. ( oh, and it stole my life- and I'd quite like it back please)]
24. Dara M, Limerick, Ireland.
    Pituitary surgery 29th June 2009
    got MRSA in sinus as a result, had surgery to remove scar tissue.
    MRSA is not for Christmas, for me it's for life xxx
25. Philip B, New Jersey.
    Pituitary surgery at MD Anderson October 31, 2007.
    Testing for Recurrence since Jan. 2011.
    Replacing Growth hormone and Testosterone
26. Donna, Winnipeg, Manitoba, Canada
    Pituitary surgery Aug2009.
    new tumor march 2010 but not told about it until sept2010 when it got to 9mm.
    had gamma knife nov. 2010.
    still waiting to be better. tumor has not shrunk yet
27. Michelle, California.
    Pituitary surgery February 2009.
    BLA February 2010.
    Not cured. Testing. 2 tumors showed on MRI.
28. Shauna N, Washougal, WA.
    Pituitary surgery 8/2/01
    BLA 2/5/02.
29. Robin S, Salem, VA
    Pituitary surgery Dec. 14, 2006
    BLA June 16, 2010
30. Lori, Great Neck, NY
    Diagnosed 12/1994.
    Pituitary surgery 3/1995
    Pituitary surgery 5/1997
    Pituitary surgery 7/1999
    Still sick. Possible Cyclical?
31. Nan, New Jersey
    Pituitary Surgery, October 2010
32. Dan, Delaware.
    Pituitary Surgery #1 August 2009.
    Pituitary Surgery #2 February 2011.
33. Cyndie M, New Jersey
    Pituitary 1-09-2009
    Upcoming BLA 4-28-2011.
34. Kim S., Pennsylvania
    Surgery #1 Jan 2010 positive for Acromegaly but was trying to find a cure for Cushings.
    Testing since Oct 2010 for Cushings.
35. Kay, New Jersey
    1st & 2nd Pituitary surgery June 2008 - in remission
36. Jenny, Iowa.
    Pituitary Surgery #1- May 2008.
    Pituitary Surgery #2- April 2009.
    Currently considering a BLA vs. pituitary surgery #3.
37. Tanya, Buffalo, NY
    Pituitary surgery #1 - February 2010
    currently seeking re-diagnosis
38. Denise P, Dallas,Oregon
    2003 Pituitary surgery Vanderbilt
    2004 canceled pituitary removal after screws were in (I was in pre-op) Vandy
    2004 Stereotactic Radiosurgery- Vanderbilt
    2005 Right half of Pit removed - OHSU
    2005 BLA - OHSU
39. Cate, Georgia
    Pituitary surgery #1 and 2 -- August 2009.
    In remission.
40. Kate, New Jersey
    Pituitary surgery #1 - Jan. 2007 (Failed)
    Pituitary surgery #2 - July 2007 (Total Pit Removal; Failed)
    CSF Leak Surgeries - Oct. 2007 (Failed; still have small leak)
    Open BLA with 18" incision - Sept. 11, 2008
    Gamma Knife Radiosurgery - Oct. 2009
    No pit, no adrenals, radiation damage to hypothalamus (cannot regulate body temp.)
41. Pat, California
    Pituitary Surgery #1: August 2000.
    Pituitary Surgery #2 December 2007.
    Currently testing for surgery #3.
42. Christy, New Mexico
    Pituitary surgery November 2010.
    Considering BLA
43. Brenda, Alberta, Canada
    Pituitary surgery May, 2007
    BLA May, 2007
44. Jamie, Washington State
    Pituitary surgery #1: March 2010.
    Pituitary surgery #2: April 2010.
45. Melissa, Florida
    Pituitary surgery #1: March 2009.
    Pituitary surgery #2: December 2009.
    BLA to come?
46. Vicki, Buffalo, NY
    Pituitary surgery #1: October 2009.
    Pituitary surgery # 2: April 2010.
    BLA soon to come.
47. Gina, Georgia
    Pituitary surgery #1: March 2009.
    Bilateral Adrenalectomy: October 2009.
48. Sherry C, Silverton OR
    1st pituitary surgery 3/2006
    2nd pit surgery 9/2006
    BLA 10/2006.
    Sick since 1999 but diagnosed in 2005.
    Tested for 1 year. Knew I had Cushing's since 2004.
    Still sick....but it's the aftermath of the damage the cortisol did to me and the steroids now.
49. Melyssa, Colorado
    Pituitary Surgery # 1: August 2009.
    Currently testing again.
50. Michaela, Toronto, Ontario, Canada.
    Pituitary surgery 1 -- June 2005
    Pituitary surgery 2  -- Jan 2008
    Pituitary surgery 3  -- July 2008
    BLA  -- July 2009
51. Gisella, California
    Pituitary surgery #1: October 2009.
    Pituitary surgery #2: August 2010.
    Pituitary surgery # 3 or BLA to come.

From Cushings-Help.com Glossary:

Pituitary Adenomas

Several therapies are available to treat the ACTH-secreting pituitary adenomas of Cushing's disease. The most widely used treatment is surgical removal of the tumor, known as transsphenoidal adenomectomy. Using a special microscope and very fine instruments, the surgeon approaches the pituitary gland through a nostril or an opening made below the upper lip. Because this is an extremely delicate procedure, patients are often referred to centers specializing in this type of surgery. The success, or cure, rate of this procedure is over 80 percent when performed by a surgeon with extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results. After curative pituitary surgery, the production of ACTH drops two levels below normal. This is a natural, but temporary, drop in ACTH production, and patients are given a synthetic form of cortisol (such as hydrocortisone or prednisone). Most patients can stop this replacement therapy in less than a year.
For patients in whom transsphenoidal surgery has failed or who are not suitable candidates for surgery, radiotherapy is another possible treatment. Radiation to the pituitary gland is given over a 6-week period, with improvement occurring in 40 to 50 percent of adults and up to 80 percent of children. It may take several months or years before patients feel better from radiation treatment alone. However, the combination of radiation and the drug mitotane (Lysodren®) can help speed recovery. Mitotane suppresses cortisol production and lowers plasma and urine hormone levels. Treatment with mitotane alone can be successful in 30 to 40 percent of patients. Other drugs used alone or in combination to control the production of excess cortisol are aminoglutethimide, metyrapone, trilostane and ketoconazole. Each has its own side effects that doctors consider when prescribing therapy for individual patients.

CSF, Cerebrospinal fluid leak: A more rare, although sometimes expected, result of surgery is drainage from the nose of a clear, watery liquid called cerebrospinal fluid (CSF), which is a normal fluid that surrounds the brain. Large pituitary tumors lean up against a membrane that separates this fluid space from the nose, and a CSF leak may occur if this membrane is absent or opened during surgery. The surgeon will generally recognize a CSF leak when it occurs and will "repair" the leak by placing a small amount of abdominal fat over the leak. The patient may awake from surgery and find that it was necessary for the surgeon to place a small tube in the lower back to allow CSF to drain into a bag and help the leak to seal. The tube is placed while the patient is still under anesthesia, and it is not painful while in place. The tube (about 3 millimeters in diameter) will remain in the lower back for 3-5 days and the patient will be kept in the hospital during this period. After the tube is removed (a painless, approximately 15-second procedure), the patient usually will be able to leave the hospital later the same day with the leak sealed. In most cases, CSF leakage does not occur and the patient may expect to go home 2 to 4 days after surgery.

BLA, Bilateral Adrenalectomy: Surgical removal of both the adrenal glands.

Gamma Knife: This is a more focused radiation treatment than conventional radiation, which reduces the risk of hypopituitarism. It provides a large dose of radiation to a tumor so that when the tumor cells divide, they die. As this method depends on the rate of cell division, symptoms may persist long after the radiation treatment.

Radiotherapy, preferably with stereotactic radiation, is effective in controlling tumor growth in the majority of patients who have residual tumor after surgery.

Fundraising Efforts

I created this ticker to show us how close we are getting to the goal of raising funds to support Cushings-Help.com.

This is my first time to raise money this way, so my methods are rudimentary.  If you decide to donate, please let me know, either by commenting below or some other way.  I will then update the ticker with the new donation so that we get an accurate reflection of our fundraising efforts.
Please consider donating $10 to keep the Cushings-Help.com's message boards up and operating free for all those who need it.
I thank all of you for your support.
~ Melissa

Fundraising for Cushing's Awareness Month

APRIL IS CUSHING’S AWARENESS MONTH

Exactly four years ago in 2007, I cried at home after receiving a call from the doctor's office.  The nurse told me that my recent lab results, including a thyroid panel, were normal. That should have been good news, right?  WRONG. I didn't feel normal. In fact, I felt worse than I had ever felt before in my life.  That afternoon, I took to the computer to research my symptoms on the internet.  When I found the Cushings-Help.com message boards, my mouth dropped. It took less than an hour to find my diagnosis.

My husband returned home after his work day less than an hour later. I announced, "I think I have a tumor on the pituitary, which hangs below the brain. I think I have Cushing's disease."

Not one day since has gone by without a thought of Cushing’s. I’ve spent many hours every day thinking about Cushing’s. Have you ever spent 1,461 days of your life sick, trying to save your life, and knowing that if you can’t convince doctors to help you that you may die?  It is not easy.  Life has not been easy for me or my family these last four years. This word and this disease have infiltrated my life.

I owe my life to MaryO, who founded the Cushing’s Help website and its message boards over 10 years ago after suffering with Cushing’s disease herself. MaryO set forth to create an online community that was lacking when she sought her cure.

I have met many shining souls and made incredible friends participating on the Cushings-Help.com message boards in the past four years.  We were lost without each other. We each came to the message boards new and scared.  We leaned on each other, as we ran everything about our experiences through these people – these new-found and desperate friends who were in the same boat as us.  We learned from each other.  Together, we shared our stories of terrible doctors’ appointments where we were dismissed as fat and lazy.  We celebrated every high test result, every clearance for surgery, and all the other details that move us forward on the journey for this disease. In this community, we found the strength to keep fighting to get cured from the disease that we were sure we had but others weren’t. We Cushies have faced seemingly insurmountable odds, and we have done so together.

Our fury and outrage male us determined to protect future undiagnosed Cushies from all of our heartaches and woes.  We hold a strong desire to create a powerful online community, and in 2008 many of us started personal blogs. My blog Cushing’s Moxie is my platform for outreach, and to date, my blog has been over 116,000 pages views. 

I learned from people who had been in my shoes. It was only through struggles with doctors and testing to diagnosis to surgery -- with this process often repeated multiple times unfortunately -- and eventually to healing and happiness that I learned what this disease is, how it truly presents itself today (not 20 years ago), how it affects the people who have it, and how to best guide myself through the quagmire.  Because of MaryO's compassionate vision and my fellow Cushies’ guidance and support on the message boards, I have steered myself to diagnosis twice for a disease that most have never heard of and doctors consider too rare.  I just can't even imagine where I would be without the Cushings-Help.com site.

With Cushing's Awareness Day approaching on April 8th and my 2nd pituitary surgery scheduled for April 20th, I decided to declare April as Cushing's Awareness Month.  Goodness sakes, you know we need the extra time!  It takes us that long to explain the intricacies of this dangerously elusive disease.

So there you have it. It is Cushing’s Awareness Month. 

As such, I decided to raise funds to support the website that saved my life.   For my friends and family who have followed me along this bumpy four-year battle, I ask that you consider making a donation to support the community that I have grown to love and call my 2nd family. 

Operating and maintaining the Cushings-Help.com site takes money.  It is imperative to keep the site free and totally available to all who search the internet for an explanation to their confounding symptoms. We must keep the site operating for others like me who search for their cure.  I ask you to join me and donate to the support this important website.

I hope to raise $500 in April 2011.  Can I count on you to donate $10?

Cushing's is a terrible disease. It ravages the body and nearly destroys a person seeking only diagnosis, treatment, and control of the rest of their life again.

The world must continue to hear about Cushing's, as this disease is not as rare as doctors think. We Cushies believe it is only rarely diagnosed.  Please consider a donation to maintain a strong presence on the web for undiagnosed Cushies to find. 

I have many interesting posts planned for Cushing’s Awareness Month this April.  As I face a daunting second pituitary surgery, I refuse to let the opportunity to help someone pass me by.   On April 20^th, I will go under general anesthesia and lie on an operating table while the neurosurgeon goes through my nose to cut out a second tumor on the pituitary, only centimeters from my brain. 

In the upcoming weeks, you might say to yourself:

“YIKES. She’s been through so much. I love that girl. I’ll ante up a donation of $10 for her Melissa’s moxie.” 

Putting words in your mouth? I hope so. 

Laying it on thick for an important cause,
Your truly,

Melissa

UPCOMING PITUITARY SURGERY SCHEDULED

Hello to all of you still following along. I wanted to tell all y'all some big news.

I have been diagnosed with cushing's disease again, and I'm off to surgery! I'll have my second pituitary surgery in Houston on April 20, 2011. 

I have many details to provide still, and I hope to find time to post back story soon.  I will say that we used our tax refund to purchase a new iPad 2, which will making sending updates from the hospital and post-op easier, I hope.

With surgery and the chance to return to the rest of my long life only 17 days away, I think of that 80s song:  The future so bright, I gotta wear shades.

THIS IS THE BEST ADVICE BASED ON MY EXPERIENCE.

I encourage you to do midnight testing every night in a row until you get your highs. Do not skip.

Get blood draws at midnight and again 30 minutes later.  Chew a salivary cortisol test swab while getting your blood drawn.  I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight. 

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high v. low, and frankly, it is quite unfair that we should have to know.  This disease is an enigma - a mystery wrapped in a riddle.  Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure.

Take control.  Your mission is to show up every night, and hang in there.

~Moxie Melissa

Low Expectations, Contracts, and All Types of Feasances

When a patient visits a doctor, s/he does so with a certain expectation. The patient recognizes the schooling and degrees the doctor holds. We pay him/her for his time, expertise, knowledge, and guidance. The patient is not allowed to be late to the appointment, as many offices reschedule the appointment for fear it will delay the already crowded schedule.  If the doctor keeps the patient waiting, so be it. The patient shuffles from room to room waiting for his/her turn.  Rarely do we complain about the time, and rarely do we leave the office in less than an hour, after a 10 minute visit with the doctor, of course. Regardless, it is a system that we all buy into. We accept. We may complain, but we need these people, these doctors. People in many societies have come to accept this modern medical practice. 

In addition, the doctor goes to great lengths to ensure the patient understands our responsibility, our financial obligation to the doctor for his time and expertise.  The patient signs many forms before the initial appointment -- outlining the beginning of this relationship.  The doctor will be paid for his service, whether through the insurance company or the patient.  The patient is paying for the service of a medical doctor. We pay them based on time, not results. In no way does the doctor ever promise to the patient that s/he will resolve our medical ailments. Isn't that a little messed up?

What happens when we patients can no longer get a doctor to listen to us? What happens when we are very clear about our symptoms, request certain testing to rule out our undiagnosed illness, yet the doctor refuses to help us?  It is my strong view that when a doctor who fails to investigate a patient's concerns about Cushing's -- yet we continue to pay them for their time but inattention -- it is a breach of contract.

"When a contract creates a duty that does not exist at common law, there are three things the parties can do wrong:

• Nonfeasance is to ignore and take no indicated action - neglect. 
• Misfeasance is to take inappropriate action or give intentionally incorrect advice.
• Malfeasance is hostile, aggressive action taken to injure the client's interests."

I have heard story after story from my Cushie friends, horror stories of the treatment they receive from doctors who dismiss their concerns, symptoms, and knowledge. It makes me so sad and ANGRY.

Nonetheless, we Cushies have come to expect this terrible treatment from doctors. When were a far enough along, we can even joke about it.

To emphasized this point, my brilliant and super cool Cushie friend Cyndie created this video, which portrays a typical exchange between Cushing's patient and endocrinologist/doctor. LOSE WEIGHT. EXERCISE. Oh yeah, well, that won't get rid of my tumors, you jackhole!  

 

Now, repeat this exchange at every doctor appointment for 4 to 20 years, and then it doesn't seem too funny.

Totally and Utterly Preposterous

One of the main reasons I spend my time to write the blog is to generate awareness about Cushing's.  Patients like me will continue to suffer needless until everyone understand how this disease impacts us so that they can take good care of us.  We deserve that. 

This story is preposterous! It's an outrage.  What can we Cushing's patients do when even the *medical staff* do not know how to take care of us?!

Birmingham hospital accused of kicking out hallucinating brain tumour teenager in pyjamas

 

A TEENAGER with a brain tumour was kicked out of hospital by security guards and left wandering the streets hallucinating in his pyjamas, relatives have claimed.

An investigation into how 19-year-old Anthony Riding, a patient under the care of Heartlands Hospital, came to be found on the street in freezing cold weather is now under way.

The desperately ill teen had not been officially discharged from the hospital and he claimed two NHS security guards had escorted him off the premises to nearby Belcher’s Lane and ripped off his patient ID wristband.

Anthony, from Bordesley Green, suffers with rare hormonal disorder Cushing’s Syndrome, caused by a tumour in the pituitary gland next to the brain.

Side effects mean that he can suffer psychological disturbances from euphoria to depression.

He was admitted as an emergency to the hospital, in Bordesley Green, suffering syndrome-related problems along with mood swings and hallucinations on the night of December 15.

But the following morning at 10am, his family found him wandering the streets in his pyjamas and flipflops as temperatures plunged into minus figures.

Dad Tony said: “After complaining to the hospital, nurses said there had been some problems during the night with Anthony when he had been swearing and needed restraining.

“That is all part of his condition but if they had a problem, someone should have rung us to bring him home or sit with him, not chuck him out on to the street in his pyjamas when he was under their care.

“We found him in his pyjama shorts and flip flops, hallucinating. He had been wandering around like that for nearly two hours and had bruises on his arms from where he had been grabbed. It was so cold, it snowed later that day.

“Anthony’s specialist nurse at Queen Elizabeth Hospital was very disappointed in what happened and told me that what other people see as bad behaviour is part of Anthony’s condition, and other medical staff should know that.”

The syndrome is so rare that only one in five million children have similar symptoms to Anthony’s and one in every two million adults.

Anthony has already undergone two unsuccessful operations on the tumour and is now waiting to see whether a month’s-worth of radiotherapy has helped.

A month after his first operation, Anthony met his footballing hero when Paul Gascoigne was visiting the NEC and he gave the teenager words of encouragement.

A Heartlands Hospital spokeswoman said: “We take the safety of all of our patients and staff very seriously and are very sorry to learn of the concerns raised by Mr Riding and his family. We will be carrying out a full investigation into the issues they have raised.

“We always aim to support our patients and staff and if an individual is consistently using violent and abusive behaviour, we have a responsibility to ensure our staff and patients are protected at all times.”

**********************

pre·pos·ter·ous

–adjective

completely contrary to nature, reason, or common sense; absurd; senseless; utterly foolish: a preposterous tale.

 

Anthony, from one Cushie to another, I wish you success on your radiation or your next surgery. I'm sorry for what has happened to you.

~Melissa

Power Users: Enough Said

Thank you to my sweet friend Rev Kev for passing along this article, and saying, "Ok so Melissa was not mentioned by name, but the profile fits."

People Coping With Rare Disease Are Internet Power Users 

iStockphoto.com

Published: March 01, 2011

by Nancy Shute

When people go online searching for health information, they're often also looking for someone who's grappling with the same problem. That's especially true if they're dealing with a rare disease.

The Internet provides a gateway to all kinds of medical facts and also to people who have come by that information the hard way.

That's the news from a survey just out from the Pew Internet Project and the California Healthcare Foundation. They found that people dealing with rare diseases are the undisputed power users of health information online.

About 25 million people in the United States have a rare disease, although each disease affects no more than 20,000 people. Because of that, people often have a hard time finding others in the community with first-hand knowledge of that disease.

People are also more likely to seek their peers out online if they are coping with a medical crisis, are a caregiver for a sick relative, or are dealing with a chronic condition. About one-quarter of Internet users in those situation seek out peers online, compared to 18 percent of Web surfers overall.

But the people dealing with a rare disease were far more likely to have honed their searching, learning, and networking skills to Olympian levels. The majority of them are connected to peers online. "We can say things to each other we can't say to others," one woman living with a blood disorder wrote in the survey. "We joke about doctors and death. We cry when we need to. Together we are better informed."

That's not to say that people are dissing doctors. Almost three-quarters of adults say they turn to doctors and other health professionals for information. Some 54 percent say they ask friends and family for advice.

But clearly the Web has something to offer people in need of medical information beyond mere data. "People want emotional support from their peers," says Susannah Fox, associate director of the Pew Internet and American Life Project, and author of the survey, which surveyed 3,001 adults in the general population and 2,156 members of the National Organization for Rare Disorders. "The rare disease communities show that people are ready and willing to share with each other so that other people can benefit from their experiences," she tells Shots. [Copyright 2011 National Public Radio]

http://m.npr.org/story/134140813?url=/blogs/health/2011/02/28/134140813/people-coping-with-rare-disease-are-internet-power-users&sc=emaf

Harvey Cushing: Rocking Modern Medicine

Famed neurosurgeon's century-old notes reveal 'modern' style admission of medical error

Science Centric
22 February 2011 23:32 GMT

The current focus on medical errors isn't quite as new as it seems. A Johns Hopkins review of groundbreaking neurosurgeon Harvey Cushing's notes, made at the turn of the last century, has turned up copious documentation of his own surgical mishaps as well as his suggestions for preventing those mistakes in the future.

Authors of the article, published in the Feb. Archives of Surgery, suggest that such open documentation may have played an important role in spurring groundbreaking medical treatment advances in Cushing's era - and could have the same effect today.

'Acknowledging medical errors is evidently something that doctors identified early on as critical to advancement a very long time ago,' says principal author Katherine Latimer, B.S., a medical student at the Johns Hopkins University School of Medicine.

Latimer and her colleagues scoured Johns Hopkins' archives to locate operative notes covering 878 of Cushing's patients. The notes, transferred decades ago to microfilm, covered the early years of Cushing's career, from 1896 to 1912, at The Johns Hopkins Hospital. After deciphering the notes - a monumental task, the authors say, owing to Cushing's poor handwriting, abbreviations, and pages crowded with notes of other physicians, too - the researchers selected 30 cases in which errors were clearly delineated.

The cases fell into categories of errors similar to those that plague doctors today, the authors said, classifying 11 of the cases as errors of judgement in which Cushing made the wrong choice during a surgery. One example: operating on the wrong side of a patient's brain. Seventeen cases were identified as 'human error,' mistakes in which Cushing revealed clumsy or careless behaviour, such as dropping an instrument into a surgical wound. Three of the errors were considered equipment or tool oversights, such as the case in which a woman's heavy bleeding left Cushing and his colleagues without enough wax, a substance used at the time to seal blood vessels.

Latimer and her colleagues say they were surprised by Cushing's frank and copious documentation of his own shortcomings. His notes acknowledged mistakes that may have resulted in patients' deaths, as well as those that didn't seem to harm patients' outcomes. They said the documentation took place in an era in which malpractice litigation was becoming a growing concern for doctors. Though malpractice penalties were substantially smaller in Cushing's day, lawsuits presented a serious risk for physicians' reputations, the authors noted.

The authors also emphasised that Cushing practised in a time of enormous surgical innovation. For example, patient mortality from surgical treatment of brain tumours fell from 50 percent to 13 percent during his career. While some of this jump ahead was due to improving technology, the authors propose that part of the reason was open documentation of errors, which helped Cushing and other surgeons develop fixes to avoid them.

'People are human and will make medical mistakes,' says Latimer, 'but being vigilant about your own shortcomings is critical to improving. To keep medical innovation flowing, we need to strive to maintain this same vigilance today.'

Alfredo Quinones, M.D., associate professor of neurosurgery at the Johns Hopkins University School of Medicine and senior author of the study, adds that today's medical errors continue to have a tremendous impact on patients and their families. 'Recognising errors and reporting them can help us greatly improve medicine,' he says. 'After all, we are all working towards the same goal: better patient care.'

Story from Science Centric | News
http://www.sciencecentric.com/news/11022234-famed-neurosurgeon-century-old-notes-reveal-modern-style-admission-medical-error.html

Pay No Attention to the Girl Behind the Smile

There are so many things I wish people knew about me but I won’t say, because you don’t ask; and when you do, you’re not truly listening.

-- an oldie but a goodie I food when reading my blog

Sleep

See and download the full gallery on posterous

Cushing's: Disease of the Night

Cushing's is a disease of the night. Fluctuating cortisol levels keep our bodies captive in a sleepless cave: one night, we may find sleep; other nights, it eludes us.

After drudging through a day of dental work and laundry yesterday, I was happy to climb in bed early. I slept soundly from 9 pm to 12:40 am.

-- ZING -- My eyes popped open.

I was wide awake until 5 am but i was to restless to sleep. My toddler daughter woke up extra early at 6 am, and I think I dozed off with her in the bed with me around 7:30 am. She played on my iPhone. She woke me up at 7:50 am, pulling the lamp string on and off, saying "Mama get up. Get uuuuppppp. Get uuuuppppp. Get uuuuppppp. Get uuuuppppp." So, because her life depended on it, I got up. We were up until we napped from 3-5 pm. I was awake from 12:40 am to 3:00 pm. Now, it is 10:00 am, I hope I can sleep through the night. If you see Mr. Sandman hanging around Go, please send him my way.

Despite my two batches of high test results and the tumor sighting, my body insists on pumping out more cortisol. I don't need all the extra anymore! Oh, I just realized. I didn't cc: my body on the email below, giving it a reprieve from all that cortisol pumping. I forgot to announce that it doesn't have to perform on command anymore (not that it really ever did but it succeed in doing the opposite aka Costanza's move). I failed to mention that there is no need to show off its full-figured, more-to-love cortisol stock pile anymore. So listen up, T-T-T-Tumor Willison Phillips. I am almost to surgery. Let's all try to get along and get some rest. No more midnight parties, please. I know you know the end is near, that your days are numbered. I hope you do go down without a fight, because whether you like it or not, I'm gonna have to cut you out of my life. Capice?

-m

Hospital Pain Scale

This is the best thing I have read in a looonnnnggg time. I plan to tape it to my rolling table bridge over my lap thing while I'm in the hospital for my 2nd pituitary brain surgery. Hooray for better communication. ~m

Boyfriend Doesn't Have Ebola. Probably.

http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-pro...

See and download the full gallery on posterous

Plop Plop Fizz Fizz: Oh What a Relief It Is

I have some very good, very personal news to share!! I wrote an email to my LA endocrinologist, cc:ing the neurosurgeon. It's easier to paste than summarize again. Here we go!

***********

I met with Dr. [Neurosurgeon] yesterday, February 22, 2011. We reviewed my dynamic 3T MRI of the pituitary dated 1/12/11, and Dr. [Neurosurgeon] immediately identified two areas of suspicion in the sequence when the dye entered the pituitary. The target area is a 3 millimeter tumor located on the right side of the pituitary. He also identified a suspicious area adjacent to where the left tumor was resected during the last pituitary surgery. The white arrow points to a tumor, aka dark area aka "area of hypoenhancement" in radiology terms.

[note: the radiologist read this 19-month post op MRI as a normal post operative scan. Radiologists are often wrong. I repeat, Radiologists are often wrong! You must have your pituitary MRIs read by a neurosurgeon. Do not stop pushing for a Cushing's until you get it].

Dr. [Neurosurgeon] is awaiting a final letter from you regarding your findings and recommendations. He is willing to accept me as his surgical patient for a second pituitary surgery.

Since your last email, I have a second positive value: a high on a salivary cortisol test supporting hypercortisolemia. It occurred the same night as my high midnight serum cortisol draws on 2/11/11. MN cortisol serums (normal
2011-02-12 @ 0037 – 1.9 (ug/dL)
2011-02-12 @ 0007 – 3.1 2011-02-11 @ 0035 – 9.7 // diagnostic for Cushing's 2011-02-11 @ 0010 – 8.4 // diagnostic for Cushing's

2011-02-10 @ 0045 – 8.7 // diagnostic for Cushing's 2011-02-10 @ 0015 –11.1 // diagnostic for Cushing's

2011-02-09 @ 0040 - 9.2 // diagnostic for Cushing's
2011-02-09 @ 0010 - 9.8 // diagnostic for Cushing's

2011-02-08 @ 0023 - 5.6 // suggestive of Cushing's

2011-02-07 @ 0030 - 5.1 // suggestive of Cushing's
2011-02-07 @ 0000 - 5.0 // suggestive of Cushing's

2011-02-06 @ 0034 – 3.3
2011-02-06 @ 0013 – 2.6
MN salivary cortisol (normal
2011-02-12 @ 0034 – 0.051

2011-02-12 @ 0009 – 0.071 2011-02-11 @ 0033 –0.180 // diagnostic for Cushing's (CORTISOL DOUBLED IN 29 MINUTES)

2011-02-11 @ 0004 – 0.087 2011-02-09 @ 0045 – 0.085 Based on these findings, are you ready to clear me for a second pituitary surgery? Dr (neurosurgeon) reviewed the benefits and risks of a second pituitary surgery. He mentioned the short-term possibility of diabetes insipidus and cited the chance for a cerebrospinal fluid leak to be 15-20%, which would require a few more days in the hospital lying flat on my back. We discussed fertility, and Dr. McCutcheon stated that having a second pituitary surgeon would like hurt the chances of maintaining fertility going forward. My husband and I discussed fertility after the appointment. We both agreed that the next step is a second pituitary surgery. We both struggle with my compromised quality of life, and we know that, above all else, is our top priority. We are not willing to consider a bilateral adrenalectomy (BLA) now, since there is a clear target for pituitary surgery, and a life on replacement steroids is scary for us. A miracle baby will follow if it is meant to be. We are still excited for what the future holds for us.

I look forward to your recommendations, and I hope surgery will be in my near future.

Sincerely,

Melissa

On Thu, Feb 17, 2011 at 12:37 AM, my Los Angeles endocrinologist:

These look high-let's see the stuff you sent to the Esoterix lab and [the neurosurgeon's] read on your mri. I like to see a 2nd positive value [indicating high cortisol].
Glad you are happy.

***********

Can you see me smiling from ear to ear! I am so happy!!!
~ m

PNA Webinar: "Thoughts, Feelings, and Behavior: What does the Pituitary Have to do with These?" - Library - Article | Pituitary Network Association

Many people watching the physical demise of a Cushing's patient may believe that the struggle to diagnosis makes us depressed. While that is true and worthy of every drop of depression, in actuality, that is only part of the story.  Tumors cause the pituitary to send out error messages that cause many hormones to sputter and malfunction. This resulting hormone imbalance leads to depression, anxiety, mood swings, and suicidal thoughts.

NOT TOO FUN. ~m

* * * * * * * * * *

PNA Webinar: "Thoughts, Feelings, and Behavior: What does the Pituitary Have to do with These?" - Library - Article

Pituitary Network Association, www.pituitary.org

This presentation covered the following:

• The basics of the hormone system
• How stress affects the pituitary gland
• The purpose of emotions and how they interact with the body
• Some of the mental health symptoms commonly associated with pituitary and other hormonal disorders
• What you can do to help yourself or a loved one with the mental and physical symptoms of and endocrine disorder

http://www.pituitary.org/library/library_detail.aspx?page_id=2410

Cortisol Levels, Thyroid Function and Aging

Thank you to my dear Cushie friend Cyndie for this excellent find.

*  * * * * * * * * * *

HOW CORTISOL LEVELS AFFECT THYROID FUNCTION AND AGING

Interview with David Zava, Ph.D

JLML: Cortisol is needed for nearly all dynamic processes in the body, from blood pressure regulation and kidney function, to glucose levels and fat building, muscle building, protein synthesis and immune function. You’ve been specifically studying the effects of cortisol on thyroid function.

DTZ: Yes, one of cortisol’s more important functions is to act in concert or synergy with thyroid hormone at the receptor-gene level. Cortisol makes thyroid work more efficiently. A physiologic amount of cortisol—not too high and not too low—is very important for normal thyroid function, which is why a lot of people who have an imbalance in adrenal cortisol levels usually have thyroid-like symptoms but normal thyroid hormone levels.

JLML: Would you explain this thyroid-cortisol relationship in more detail?

DTZ: One way to understand the synergy of cortisol and thyroid is to think of trying to turn on a big round valve with one hand, as opposed to two hands where you can really grip it and turn it on. Both thyroid and cortisol have to be there in the cells, bound to their respective receptors at normal levels, to efficiently turn the valve on and get gene expression. So, when cortisol levels are low, caused by adrenal exhaustion, thyroid is less efficient at doing its job of increasing energy and metabolic activity.

Every cell in the body has receptors for both cortisol and thyroid and nearly every cellular process requires optimal functioning of thyroid.

JLML: And what happens when cortisol levels get too high?

DTZ: Too much cortisol, again caused by the adrenal glands’ response to excessive stressors, causes the tissues to no longer respond to the thyroid hormone signal. It creates a condition of thyroid resistance, meaning that thyroid hormone levels can be normal, but tissues fail to respond as efficiently to the thyroid signal. This resistance to the thyroid hormone signal caused by high cortisol is not just restricted to thyroid hormone but applies to all other hormones such as insulin, progesterone, estrogens, testosterone, and even cortisol itself. When cortisol gets too high, you start getting resistance from the hormone receptors, and it requires more hormones to create the same effect. That’s why chronic stress, which elevates cortisol levels, makes you feel so rotten—none of the hormones are allowed to work at optimal levels.

Insulin resistance is a classic example. It takes more insulin to drive glucose into the cells when cortisol is high. High cortisol and high insulin, resulting in insulin resistance, are going to cause you to gain weight around the waist because your body will store fat there rather than burn it.

JLML: This would certainly be a significant effect when it comes to creating balanced hormone levels.

DTZ: When cortisol is high the brain also is less sensitive to estrogens. That’s why you can have a postmenopausal woman with reasonable amounts of estrogen, but when you put her under a stressor and her cortisol rises, she’ll get hot flashes, which are a symptom of estrogen deficiency. She really doesn’t have an estrogen deficiency, the brain sensors have just been altered. If you then drive the estrogen levels up with supplementation to treat the hot flashes, she’ll start getting symptoms of estrogen dominance like weight gain in the hips, water retention, and moodiness. And the hot flashes usually don’t go away.

This is why you often can’t effectively treat someone with hormonal imbalance symptoms such as hot flashes by simply adding what seems to be the missing hormone, be it thyroid, progesterone, estrogen or testosterone. If your cortisol is chronically high you’ll have overall resistance to your hormones.

Click here for full article; http://www.virginiahopkinstestkits.com/cortisolzava.html

DENTAL WORK: Thanks a lot, Cushing's!

I am having a lot of dental problems. Just went to the dentist this past Monday. She was showing me cracked teeth, chipped teeth, broken crowns, broken fillings -- plain as day in the photographs on the screen in front of me.  Undeniable. I was shocked and mortified!

After going tooth by tooth, detailing what she recommends for treatment, the dentist asked, "Do you grind your teeth?" I said, "I did when I was younger, but I don't know now." She said that bruxism or teeth grinding appears to be the cause of the damage to my teeth. I asked her what causes that, and she said, stress.

HELLO!

I saw a dentist just last year, when I thought I chipped a tooth on a piece of hard candy. I didn't have the chipped tooth after all, but he didn't mention any of this other damage. We even discussed Cushing's because his teenage cousin had just gotten some high cortisol tests. So, I don't know if all this damage has happened in the last 12 months while my cortisol has been getting higher or not.

So, I am in for $2500 of dental work plus a mouth guard, which can't be fitted until I get all the other repair work done. My dental insurances covers $1500, so I plan to pursue additional money from the medical insurance, since of courses, this problem is the results of a medical condition -- 255.0. Has anyone ever tried that? Regardless, I'm gonna try to get the medical insurance to reimburse me some of the money. Just another fight on my hands, I am sure.

Boo, Cushing's. Boo to you.

2009 article on Cyclical Cushing's

A member of the message boards shares this article yesterday. Thank you!

Lower cure rates, lower adenoma id, older patients, longer follow-up. This is an interesting paper.

The prevalence and characteristic features of cyclicity and variability in Cushing's disease.

Click here for full article:  http://www.eje-online.org/cgi/content/full/160/6/1011

BlogTalkRadio with Dr. Friedman

Struggling with Cushing's?

Undiagnosed but your gut says you have it?

Post op pituitary surgery?

Persistent Cushing's and still sick?

Pre-op or post-op bilateral adrenalectomy? 

This series of free online radio chats are for you.

MaryO, founder of Cushings-Help.com and Cushie.info, and Robin, active board member/blogger of Survive the Journey and Cushing's 365, interview Dr. Theodore Friedman, an endocrinologist based in Los Angeles, CA.  Dr Friedman has helped many fellow Cushies, and I am proud to have him as my doctor now.

- CushingsHelp | Internet Radio | Blog Talk Radio -

Interview with Dr. Ted Friedman DR. F 1/29/2009

Second Interview with Dr. Ted Friedman DR. F 3/12/2009

Dr. Ted Friedman Returns for his Third Interview 2/13/2011

In his private practice, Dr Friedman charges $450 an hour for his time. He has generously donated three hours to us Cushies in these blog chats, and it is far more valuable than the $1,350 you would have paid if you had the exact same conversations in his office. This information is priceless, because it *empowers* patients with knowledge to overcome this rare and rascally disease that doesn't want to go down without a fight.

These chats explain why our local endocrinologists' conventional understanding of and protocol for cushing's does not help all of us. In fact, Dr. Friedman helps us understand that the process of testing, diagnosis, treatment, and surgery (-ies) for patients with cyclical cushing's is very different from florid Cushing's patients.  He and his colleagues work very hard to ensure his research findings make their way into the medical literature in hopes of shaping future treatment of mild or episodic Cushing's patients. Also, be sure to read Dr Friedman's latest paper, aptly titled:

High Prevalence of Normal Tests Assessing Hypercortisolism in Subjects with Mild and Episodic Cushing’s Syndrome Suggests that the Paradigm for Diagnosis and Exclusion of Cushing’s Syndrome Requires Multiple Testing

Spinning Out of Control

I am pleased to see more and more articles about Cushing's on the internet. I repost them here, hoping that someone will see themselves in one of these articles.  If I can help someone put a name to what ails them, then I have done my small part.

However, I do want everyone to realize that not all cases of Cushing's are resolved with one surgery. I know many people who go on to have more than one pituitary surgery, and maybe even a bilateral adrenalectomy in an effort to stop cortisol production at the source. Some even go on to have gamma knife radiation to zap remaining ACTH-producing cells on their pituitary.

Patients with cyclical/ periodic/ episodic/ persistent Cushing's will struggle much more with diagnosis, treatment, and cure.  Please just keep this in mind.

~Moxie Melissa

* * * * * * * * * *

Spinning Out of Control

Unexplained symptoms left Shana Leslie feeling like an old woman trapped in a 30-year-old’s body.

Throughout 2007, Shana Leslie* developed acne, experienced increasingly shorter menstrual periods and gained more than 20 pounds, mostly in her midsection. Her friends were not surprised. “I had just turned 30, was in the middle of a divorce and had recently been promoted at work,” says Ms. Leslie. “So everybody told me it was related to stress.”

Spinning Out of Control: Cleveland Clinic's Diagnosis Challenge, Summer 2010

New Testing Protocol is Needed

Are you struggling to get diagnosed?  Is your doctor refusing to order any more cortisol tests because the ones you have had came back normal? Do you feel in your gut that Cushing's encapsulates ALL the odd symptoms that you've had for years that no doc can really treat or cure? Well, this is the article you have been waiting for.

Dr. Friedman's latest paper outlines the need to reconsider the testing protocol for patients who experience episodic or cyclical Cushing's. This is a good read.

http://www.goodhormonehealth.com/symptoms/episodic%20cushings-hmr.pdf

Horm Metab Res.  2010 November; 42(12)

High Prevalence of Normal Tests Assessing Hypercortisolism in Subjects with Mild and Episodic Cushing’s Syndrome Suggests that the Paradigm for Diagnosis and Exclusion of Cushing’s Syndrome Requires Multiple Testing

T. C. Friedman,¹ D. E. Ghods,¹ H. K. Shahinian,² L. Zachery,¹ N. Shayesteh,¹ S. Seasholtz,¹ E. Zuckerbraun,¹ M. L. Lee,¹ and I. E. McCutcheon³

¹Division of Endocrinology, Metabolism, and Molecular Medicine, Charles Drew University of Medicine and Science, Los Angeles, CA, USA

²Skull Base Institute, Los Angeles, CA, USA

³Department of Neurosurgery, MD Anderson Medical Center, Houston TX, USA

Correspondence T. C. Friedman, MD, PhD Charles Drew University of Medicine & Sciences, Division of Endocrinology, 1731 E. 120^th. St., CA 90059, Los Angeles, USA, Tel.:+1/310/668 5197, Fax: +1/323/563 9324, Email:theodorefriedman@cdrewu.edu

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Abstract

Many Endocrinologists believe that a single determination of eucortisolism or a single demonstration of appropriate suppression to dexamethasone excluded Cushing’s syndrome, except in what was previously thought to be the rare patient with episodic or periodic Cushing’s syndrome. We hypothesize that episodic Cushing’s syndrome is relatively common and a single test assessing hypercortisolism may not be sufficient to accurately rule out or diagnose Cushing’s syndrome and retrospectively examined the number of normal and abnormal tests assessing hypercortisolism performed on multiple occasions in 66 patients found to have mild and/or episodic Cushing’s syndrome compared to a similar group of 54 patients evaluated for, but determined not to have Cushing’s syndrome. We found that 65 of the 66 patients with Cushing’s syndrome had at least one normal test of cortisol status and most patients had several normal tests. The probability of having Cushing’s syndrome when one test was negative was 92 % for 23:00 h salivary cortisol, 88 % for 24-h UFC, 86 % for 24-h 17OHS, and 54 % for nighttime plasma cortisol. These results demonstrated that episodic hypercortisolism is highly prevalent in subjects with mild Cushing’s syndrome and no single test was effective in conclusively diagnosing or excluding the condition. Rather, the paradigm for the diagnosis should be a careful history and physical examination and in those patients in whom mild Cushing’s syndrome/disease is strongly suspected, multiple tests assessing hypercortisolism should be performed on subsequent occasions, especially when the patient is experiencing signs and symptoms of short-term hypercortisolism.

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