MelissaTX posted this on the message boards in honor of Cushing's Awareness Day, April 8:
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).
- Melissa, Texas.
Pituitary surgery #1: June 2009.
Pituitary surgery # 2: soon in April 2011. - 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
BLA 03-07-08
CSF Leak repair 10-28-08 - Lisa, Illinois.
Pituitary Surgery 5-30-08
BLA 11-4-09
Still not cured. - Susan G.
Pituitary Surgery 7/07
Cleared for 2nd pituitary surgery 10/10. - Kimberly, Illinois.
Pituitary Surgery 11-2-2009
BLA 2-2-2011. - 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 - Lisa O, Washington State
3/25/2009-pituitary surgery
5/13/2010-BLA - April, KY.
Unsuccessful pituitary surgery 1/15/10.
Testing again. - 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
BLA 2/5/02. - Robin S, Salem, VA
Pituitary surgery Dec. 14, 2006
BLA June 16, 2010 - Lori, Great Neck, NY
Diagnosed 12/1994.
Pituitary surgery 3/1995
Pituitary surgery 5/1997
Pituitary surgery 7/1999
Still sick. Possible Cyclical? - Nan, New Jersey
Pituitary Surgery, October 2010 - Dan, Delaware.
Pituitary Surgery #1 August 2009.
Pituitary Surgery #2 February 2011. - Cyndie M, New Jersey
Pituitary 1-09-2009
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.
In remission. - 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.
Considering BLA - 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
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. - 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. - (Addition 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.
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.
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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.
Thanks!
