MelissaTX

Hope, thank you for posting. I have never heard of this, but I will look into getting an octreocide scan after my two failed pituitary surgeries found two tumors but left me uncured.

It seem like those two links point to a lot of single case studies of the one patient they saw. Now it is necessary to have one of those docs take the lead and write a paper discussing all of the cases and rooting out similarities and hopefully moving forward to a cure.

I plan to update this list again for release on cushing's awareness on April 8, 2012.

If you need to be added to the list, please start your post with the word NEW.

If you need to be revise your entries on the list, please start your post with the word REVISE.

Please try to write your entry in the same style as the list. Less editing for me.

I'd appreciate the help bumping this up in the next six weeks so we can capture as many cushies as necessary.

Sorry, I like Gracie have been swamped. Can you add me as well?

 

Kristin, Utah

Pituitary surgery, University of Utah 4/15/2010

BLA, University of Utah 6/28/2010

 

Thanks everyone for contributing! It's wonderful to have so many experienced here to help! I couldn't have gotten this far without you all!!!!

 

Hugs,

Kristin

Of course, MaryO. Please post this far and wide! It is best if seen by many,

I like the idea of linking to our bios. Mine is woefully outdated. I'll try to write a new one soon (add to the loooonnnnggg list).

Also, what about linking to blogs? So, if someone sees someone who is near them, they can click through to the blog to read more. That is a lot more work for you, as you will be linking all those, but if we collect the information here, I can update my blog entry to include the hyperlinks, too.

Also, I personally know quite a few folks who are not included on that list but had multiple surgeries. What should we do about them? I wonder if people would mind if we just put their first name and their state, then the dates of the surgeries? We can get a lot of that info from the Signature portion of the boards.

So, just throwing ideas around. There's always so much to do, huh?

Thanks for posting the additions to the list here. I'll do the same if I come across some.

Melissa

Amy (kalimae I think)

My name was not on there. If you would like to use my info, here it is:

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

Here is the full list, feel free to copy and paste it. Personalize it. This list is meant for all of us to share.

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. 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).<br style=""> <br style="">

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 <a href="http://www.cushings-help.com/definitions.htm.htm#tumor">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.

This post has been promoted to an article

OK. I posted this list on my blog.

http://cushingsmoxie.blogspot.com/ dated today, April 8, 2011

I got you, Gisella!

LAST CALL! If you want to join the list of folks looking for a cure with multiple surgeries, add your info now.

I am putting the finishing touches on the 50 person list, and I'll be posting the link here so you can share with your friends and family, via email or facebook.

Yup. I will merge the lists closer to April 1st. I'll post it in both places so everyone can post to emails, blogs, FB, wherever.

24 listed in the facebook site. That's 40 of us.

Can we get that number up to 50?

16 of us listed here. I'm going to check how many reported in on the FB side...

This is a great list, everyone. There are another 20 or so posted on the facebook cushing's page. That's 25 people that I can point to and say, "see? I'm not the only one with a "reoccurrence"," or "look at all these people who suffer for years and years, like me." both are very powerful messages.

I hope more will add info to the list.

Also, be sure to add radiation and other treatments, too, if you wish. Also, if you are testing still, please end your entry with that.

Hi everyone. I have been thinking about Cushing's Awareness Day.

I want to create a list to show how many of us struggle with multiple surgeries. If you would like to participate, can you please reply below?

Please give your name, location, date of each pituitary surgery, and date of BLA. Please give us your real name, or I'll give you a fake name. I believe it will humanize us as patients when we use first names. I will just use your name and general location, maybe state or province or country.

I will format all the entries and then post the nice list that I hope we will all blog and share on April 8th. Hope you will participate. It is really important to educate our friends and family about how common it is to need multiple surgeries. Thanks!

I'll start:

Melissa, Texas. Pituitary surgery #1: June 2009. Pituitary surgery # 2: March 2011.

You dd everything perfectly, lbeu. Thank u so much. I look Forward to learning more about this.

We started a discussion on the effects of Agent Orange on Vietnam veterans and their descendants. We hijacked that thread--

http://cushings.invi...entry423090-- but with so much info, it's best to start a fresh thread here.

Can someone post the parts abbot agent orange from that post here? I'm on my iPhone and it will be difficult.

MelissaTX

Thanks for the idea, Mary. I like this solution and it will certainly decrease all the scrolling we do as we read these messages!

I promise a donation as soon as my husband gets his bonus in the new year.

Thanks again for all you do.

M