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. We lean on and help others even as we struggle to find our way through complicated testing, surgery (-ies), and hopefully, cures.
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 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).
- MaryO, Virginia
Pituitary tumor removed by transphenoidal resection at NIH (Dr. Oldfield) Nov 3, 1897
Fall 1999, learned that pituitary gland was shutting down. Becoming adrenal insufficient because of it.
2001, Growth hormone numbers show deficiency
September 2004, Went back on daily Cortef
December 6, 2004, started on daily Growth hormone injections
April 27, 2006, argenine (growth hormone test) retested
April 28, 2006, diagnosed with kidney cancer (renal cell carcinoma). Did GH help it grow?
May 9, 2006, entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes.
Now, growth hormone is still low. Since I am over 5-years post op on the cancer, I could take it again but am leery.
- Melissa, Texas/California.
Pituitary surgery #1: June 2009.
Pituitary surgery # 2: April 20, 2011
[post op labs on day 5 and 16 show high ACTH and symptoms did not retreat one bit].
Bilateral adrenalectomy: planned for 2012.
- Sarah, Oregon.
Pituitary surgery #1: Nov 2009.
Pituitary surgery #2: March 2010.
Pituitary Surgery #3: Sept 2010.
BLA: April 2011.
- Alex B, California
Pituitary surgery March 2008
BLA July 2009.
- 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
- Jill, Denver, Colorado
left adrenalectomy Nov 2006
right adrenalectomy Feb 2008
- 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.
- 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.
- 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!
- Justin K., Kansas
Pituitary surgery, May 19, 2008.
BLA, May 6, 2009.
- Jessica K., Kansas.
Pituitary surgery, May 16, 2008.
BLA, May 6, 2009.
- Bill K., Kansas.
Pituitary surgery, August 14, 2009.
BLA, June 2, 2010.
- Danielle, Massachusetts.
Pituitary Surgery #1 Dec 16, 2009.
Pituitary Surgery #2 February 11, 2010.
BLA Sep 2, 2010
- Trisha T, Tampa FL
Pituitary surgery 4/07
Currently trying to avoid BLA with various meds.
- Cindy W, Kentucky.
Pituitary Surgery 11-5-07
CSF Leak repair 10-28-08
- Lisa, Illinois.
Pituitary Surgery 5-30-08
Still not cured.
- Susan G.
Pituitary Surgery 7/07
Cleared for 2nd pituitary surgery 10/10.
- Kimberly, Illinois.
Pituitary Surgery 11-2-2009
- Debra, Virginia
Debra v. Gallbladder due to Cushings, 1/2005
root canal due to broken tooth 8/2008
Pituitary surgery 10/2008
Sinus/leak repair 1/2011
Surgeries offered and rejected == repair of foot muscles, lap band surgery; surgery for excess stomach acid
- Lisa O, Washington State
- April, KY.
Unsuccessful pituitary surgery 1/15/10.
- Elizabeth J, KY
Pituitary Surgery 7-2-2009
BLA Sept. 15, 2010
- Trisha S, Indiana
Pituitary surgery 11/13/2008.
Not cured - retesting.
- 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)]
- 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
- Philip B, New Jersey.
Pituitary surgery at MD Anderson October 31, 2007.
Testing for Recurrence since Jan. 2011.
Replacing Growth hormone and Testosterone
- 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
- Michelle, California.
Pituitary surgery February 2009.
BLA February 2010.
Not cured. Testing. 2 tumors showed on MRI.
- Shauna N, Washougal, WA.
Pituitary surgery 8/2/01
- Robin S, Salem, VA
Pituitary surgery Dec. 14, 2006
BLA June 16, 2010
- Nan, New Jersey
Pituitary Surgery, October 2010
- Dan, Delaware.
Pituitary Surgery #1 August 2009.
Pituitary Surgery #2 February 2011.
- Cyndie M, New Jersey
Upcoming BLA 4-28-2011.
- 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.
- Kay, New Jersey
1st & 2nd Pituitary surgery June 2008 - in remission
- Jenny, Iowa.
Pituitary Surgery #1- May 2008.
Pituitary Surgery #2- April 2009.
Currently considering a BLA vs. pituitary surgery #3.
- Tanya, Buffalo, NY
Pituitary surgery #1 - February 2010
currently seeking re-diagnosis
- 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
- Cate, Georgia
Pituitary surgery #1 and 2 -- August 2009.
- 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.)
- Pat, California
Pituitary Surgery #1: August 2000.
Pituitary Surgery #2 December 2007.
Currently testing for surgery #3.
- Christy, New Mexico
Pituitary surgery November 2010.
- Brenda, Alberta, Canada
Pituitary surgery May, 2007
BLA May, 2007
- Jamie, Washington State
Pituitary surgery #1: March 2010.
Pituitary surgery #2: April 2010.
- Melissa, Florida
Pituitary surgery #1: March 2009.
Pituitary surgery #2: December 2009.
BLA to come?
- Vicki, Buffalo, NY
Pituitary surgery #1: October 2009.
Pituitary surgery # 2: April 2010.
BLA soon to come.
- Gina, Georgia
Pituitary surgery #1: March 2009.
Bilateral Adrenalectomy: October 2009.
- Sherry C, Silverton OR
1st pituitary surgery 3/2006
2nd pit surgery 9/2006
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.
- Melyssa, Colorado
Pituitary Surgery # 1: August 2009.
Currently testing again.
- Michaela, Toronto, Ontario, Canada.
Pituitary surgery 1 -- June 2005
Pituitary surgery 2 -- Jan 2008
Pituitary surgery 3 -- July 2008
BLA -- July 2009
- Gisella, California
Pituitary surgery #1: October 2009.
Pituitary surgery #2: August 2010.
Pituitary surgery # 3 or BLA to come.
- (Additions to original list, 4/9/2011)
Tonya, NW Indiana
Pituitary Tumor: Transphenoidal Hypophgsectomy - May, 2000
Gamma Knife - July 2003
then developed two Anyeurisms and had Anyerism Clippings in Nov., 2007.
Unfortunately, now th as t I have clips in my head, nobody will run an MRI so now I have no way of monitoring the tumor growth since.
- AnellH, Dominican Republic
I'm cured 01 Dec 2009 total pituitary removed.
- (Additions to original list, 4/10/2011)
Amy (kalimae on the boards)
1. Pituitary surgery and repair CSF leak 6/26/06 OHSU
2. Pituitary surgery and repair CSF 10/03/06 OHSU
3. BLA 10/13/06 OHSU
4. Repair CSF leak 10/18/06 OHSU
6. Insert lumbar peritoneal shunt 10/18/06
7. remove LP shunt 3/18/07
8. Repair CSF leak 11/22/08
9. Remove left overs from LP shunt 8/15/09 (a 2 foot piece of cathether was left in my body and was causing severe pain on my left side)
10. Hysterectomy due to panhyopituitary issues on 11/02/10
- Becky, Illinois
1st pit surgery May 2003, GK July 2003, residual tumor, been testing since and hopefully have surgery again soon, panhypopit from GK
2 surgeries in 2011 and anterior pituitary removed
- Grace, Mt. Vernon, OH
Pituitary surgery 8/2008
Bilateral Adrenalectomy 5/2009
- (Addition to original list, 4/12, 2011)
Pituitary surgery, University of Utah 4/15/2010
BLA, University of Utah 6/28/2010
- (Additions to original list, 2/20, 2012)
Pituitary Surgery April 2010
BLA soon to come
- Liliana, Virginia
Pituitary Surgery #1, June 2001
Pituitary Surgery #2, May 2007
Cabergoline treatment failed 2010
Rejected from clinical trial for SOM230 LAR Nov 2011
Begin re-testing for for re-inclusion in same clinical trial for SOM230 LAR Oct 2012
- Samantha Dodwell
Pit surgery July 2008
Now bla or radiation, still have to deside.
- Nicole Velardi, Tannersville PA
1st pit surgery: full crainiotomy 8/4/2010. SACRED HEART HOSPITAL
2nd pit surgery: Transphenoidal Sinus Surgery 4/12/2011 THOMAS JEFFERSON UNIVERSITY HOSPITAL, FOR NEUROSCIENCE
3rd pit surgery: Lindic Radiosurgery 7/28/2011 THOMAS JEFFERSON UNIVERSITY HOPSITAL ONCOLOGY/RADIOLOGY
Still fighting the good fight. Every day is a struggle. People need to realize, DOCTORS ESPECIALLY, that removal of the tumor does not equal a 'cure'!!!
Good luck my fellow cushers! XOXO
- Carrie, Idaho
Right Adrenal removal Aug 2010.
- Fabiana, New Jersey
Pit surgery #1 July 2004
Pit surgery #2 October 2011
BLA January 2012
- Jenny, Louisiana
1st pituitary surgery 2000
2nd pituitary 2002
gamma knife radation 2003 to the pituitary.
sent me to little rock ark in 2004 3rd pit surgery with spinal leakage then a repair to come back to louisiana and spinal leakage again, 3 surgeries to pack a hole and then 4th surgery removal of the whole pit.
2005 both adrenals were removed.
- Olga, Sonora, California
Pituitary Surgery #1 @ Stanford Hospital, Palo Alto, CA on May 4, 2011
- Lauren, Pennsylvania
Pituitary Surgery #1 (January 2011), currently awaiting next treatment for recurrance of Cushing's.
- Michelle N. Panama City, Fl
Pituitary Surgery #1 (entire removal of pituitary) January 2006 at U.A.B.
Being tested for Surgery #2 or Gamma Knife Radation
Cushing's Symptoms back along with elevated 24 hour UFC and ACTH, even though I do not have a Pituitary gland
Testing, Testing, Testing AGAIN, MRI last week showed no tumor but have been off replacement Corteff since 2-1-12 without Adrenal Crisis, so, I have a tumor making it somewhere :/...They are still looking..
- Jennifer- Massachusetts
Pituitary Surgery with CSF Leak & BLA in 2005 At OHSU.
Have rest tissue...more testing for now.
- Barbara, West Islip, NY
pit surgery Dec 9 2011.
Mother of 13 yr. old
Pituitary surgery Aug 2011
- (Additions to original list, 2/22, 2012)
1st pituitary surgery 2000
2nd pituitary 2002
gamma knife radation 2003 to the pituitary
sent me to little rock ark in 2004 3rd pit surgery with spinal leakage then a repair to come back to louisiana and spinal leakage again
3 surgeries to pack a hole and then 4th surgery removal of the whole pit.
2005 both adrenals were removed.
- Cecilia, South Africa
Pituitary surgery May 2011.
- Barbara, West Islip, NY
pit surgery Dec 9 2011
- Margie Reed-41, Venus, TX
pit surgery 08
diagnosed with Cushings in 09
waiting for date of pit surgery #2.
National Institutes of Health, Bethesda, Maryland. Pit surgery on August 4,2001
spinal leakage repaired August 8,2001 and several day long stay in ICU started on August 10,2001. I was 12 years old.
- Jennifer, New Jersey
Pituitary Surgery 2004
Bilateral Adrenalectomy 2006
Radiation in the future for highly elevated ACTH levels.
- (Additions to original list, 2/27, 2012)
Pituitary surgery #1, 2009.
Pituitary surgery #2, 2010.
In remission but constantly testing for a recurrence.
- Mary, Michigan
Pituitary surgery, 2007 with Dr. Jho
Thought I had a cure, but still sick, not rediagnosed,
No insurance and can't afford to test,
MRI's appear clear
- (Additions to original list, 3/14, 2012)
Lareina Loper, Georgia
pituitary surgery #1 June, 2011
- Kristin P, Utah
Pituitary surgery University of Utah 3/15/2010
BLA also University of Utah 6/28/2010
- Terry G, Illinois
Terry had pituitary surgery in October 2003
BLA December 2003.
- Terry G's daughter Sarah G
pituitary surgery in July 2010
- Adrienne B. Phoenix, AZ
Pituitary surgery #1-Jun 2010
Pituitary surgery, December 8, 2003
Still unsure if cured
- Dawn A, Illinois
Pit surgery at MD Anderson on Jan 20, 2012.
Sphenopalatine artery bleed on Feb 2nd, 2012.
- (Additions to original list, 3/26, 2012)
Alicia, Alberta, Canada
Pituitary surgery Febuary 2002.
BLA date to be determined.
- Eve, Sugar Land TX
I am just diagnosed (today in fact! [3/26/12]) but have struggled with symptoms for about 8 years
Awaiting surgery to remove the right adrenal & its nasty little tumor---and hopefully that will be the first step back to the old me!
- Sharon, Long Island
Pituitary Surgery Nov 2007 Mt Sinai Hospital New York City
- (Additions to original list, 3/28, 2012)
Sheila Mary, Ottawa, Ontario, Canada
Unsuccessful Pituitary Surgery in 2008
Currently testing for upcoming surgery in 2012.
- Vanessa P, Eau Claire, Wisconsin
Left BLA on January 26th, 2012.
- (Additions to original list, 3/30, 2012)
Rebecca Lucas, 36, Memphis Tn.
Cushings symptoms started 1999
Cushing's Disease diagnosed Dec. 03
transsphenoidal adenomectomy in Jan 04
My Neurosurgeon said my tumor had been there for about 5 yrs and it was so big I had probably 6 months before it would have killed me.
Fast forward to now 2012 I have severe pain in arms and legs with no reason
no energy. This disease has robbed me of my life!!!
- (Additions to original list, 9/26, 2012)
Lori Genser Burkhoff, 34, Great Neck, NY.
Pit surgery #1 Kalinin Post, mt Sinai hospital. 7mm ACTH+ tumor. Short remission.
Pit surgery #2 same doc, no tumor.
Pit surgery #3, NIH Ed oldfield ACTH+ tumor found. Remission with cycling cortisol #s.
pit surgery #4, 9/17/12 Dr. P, osu. 8 mm ACTH+ tumor found in sphenoid sinus. No crash.
Pit surgery #5, 9/22/12 total removal of pit and sinus bone. Crashed to zero.
- Kristen, Utah
Pituitary surgery 4/2010
BLA 6/2010 Cured/Remission
- Alicia Horton
Pituitary surgery #1: Feb. 2011
Pituitary surgery #2: May 2012.
- (Additions to original list, 9/27, 2012)
Pituitary Surgery July 6th 2008. University of Virginia, Dr. Edward Oldfield.
- Kathy, Pennsylvania
Pituitary surgery 9/1/10
Gamma Knife 2/11
- Venessa- California
Diagnosed w/ Adrenal tumor 8/08
Unilateral adrenalectomy 11/08
- Sean - PA.
Diagnosed w/ 2 adrenal tumors ( Bilateral Macronodular Adrenal Hyperplasia) 7/10.
Left Adrenalectomy 10/10.
Right Adrenalectomy 1/11.
Surgery to repair surgical hernia with mesh 7/11.
Current Med: Hydrocortisome 30-40mg a day.
- Elisabeth Goodridge
Pituitary tumor located and diagnosed as cause of Cushing's. Surgery Feb 2 2012.
Pronounced "cured", but I feel like I still have a ways to go.
- Nicole/ Bridgeport CT
Pituitary Surgery 9/17/2012
- Michelle, Panama City FL
Pituitary Surgery #1 January 25 2006, UAB (removed my pituitary-level 0)-Remission
Pituitary Surgery #2 July 18 2012 UAB-Not in remission-seen no tumor-making pit #'s
From Cushings-Help.com Glossary:
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.
Pituitary Hyperplasia is the increase in number of cells/proliferation of cells. It may result in the gross enlargement of an organ and is occasionally a cause of Cushing's Disease. Despite recent progress in imaging, it is still difficult to distinguish between pituitary adenoma and hyperplasia, even using Magnetic Resonance Imaging (MRI) with gadolinium injection.
Radiotherapy, preferably with stereotactic radiation, is effective in controlling tumor growth in the majority of patients who have residual tumor after surgery.
MaryO'Note: Thanks for doing all this work, Melissa! You did a fantastic job and the numbers are really telling.
Since you said we could copy it, I'm going to put it on http://www.cushie.info if you don't mind.
If anyone on this list has a bio on the website, and you'd give your permission, I'd like to link your bio to your stats on this list.
You may also add your information by submitting a comment to this post.