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Useful Information


Add your name; Help us show how difficult Cushing

Apr 09 2011 12:38 PM | MelissaTX in Useful Information

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).

  • 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.

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-...tm#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.

Read story →    1 comments    -----

New MemberMap

Apr 10 2012 02:12 PM | MaryO in Useful Information

For all Cushies, diagnosed or not, friends and family - add your name and whatever info you want to share to this map. The directions are similar to those for AI, below.

Cushing's MemberMap

Posted Image


If you have Adrenal Insufficiency, a friend of mine from Adrenal Insufficiency United has a similar map. Please add your info to her map, as well.

Adrenal Insufficiency Map

Directions for the AI map:

LET’S FIND EACH OTHER! (please read the instructions)


Use ONE MARKER PER PERSON WITH AI (to ensure an accurate representation do not add yourself as a parent or family member) However, If you have lost a loved one to AI, feel free to add them just indicate it in the description box.

After navigating to the map

CLICK “ADD” on top right of map

ENTRY NAME: Initials, first name, City...any of these are fine..or just leave it blank and it will say anonymous

LOCATION: if you don’t want your address known just “click on a map location”
I put my daughter in a park near our home :o) zoom in or out to find your location.


DESCRIPTION: Age of affected, or any other description you’d like

PHOTO: not required

MARKER Addison’s is the default so make sure you look at the whole list. If you have more than one condition which causes your or your childs’ AI, just pick the one you feel is the most relevant and then feel free to add the others in the Description box.

Please do not use ADRENAL INSUFFICIENCY UNITED’S marker. Right now it’s for our main office, but we’ll add more locations/contacts in the future.

CLICK SUBMIT

After you submit, write down the url link for future edits. Then click your marker, and then again click the BLUE initials, city, or anonymous...this will open up a more detailed window to add DOB and Diagnosis info plus anything else you like. Just remember if you put any personal email it will be able to be viewed by anyone.

If you mess up don’t fret, just contact me, as the admin of the map I can fix your entry.

Read story →    0 comments    -----

Things I've learned and wanted to share

Dec 17 2005 05:42 PM | LindaP in Useful Information

I have learned so much on this cushing's journey, much of it from all of you and this site. I wanted to share those learnings, in the event that it helps anyone else.

Obviously - my own opinions here!

My best wishes to everyone on their cushings journey.

Linda

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

1. Trust your instincts.
2. Trust your instincts some more.
3. Do your research – read everything you can, talk to people, use this website and the message boards. Slog through research papers. Not all of it will make sense, but it is amazing how much you can learn, and how much it will help you on your diagnostic journey.
4. Not everyone will have every one of the "typically described" symptoms of the hump, moon face, straie, and central obesity. Some people get them all, some people get some, and others don't develop these signs.
5. While substantial weight gain is very common with Cushings, there are some people who have only mild or moderate weight gain. What seems to be the common thread, however, is the inability to lose it in spite of diet and exercise.
6. You don't need to test positive on every single test, or test positive on every type of test, to have Cushings. There is substantial variation in how we present with the disease, and in which tests will identify the excess cortisol in our bodies. Do not let a single negative result on any one test, or negative results on a particular type of test, prevent you from aggressively pursuing a Cushings diagnosis if there is strong suspicion. For example, it is possible for an individual to have proven Cushings without ever having a positive on a ufc or dex suppression test.
7. Do not waste time, energy and financial resources on unhelpful doctors.
8. Whenever possible, get to a true Cushings expert as soon as the disease is suspected.
9. When seeing a new endocrinologist, don't be afraid to ask:
a. What is your opinion on cyclic or intermittent Cushings?
b. When and how might you diagnose a mild or early case of Cushings? Do you recommend treatment in those cases?
c. Do you believe it is possible for someone to have Cushings without all or some of the commonly associated stigmata (straie, hump, moon face, substantial weight gain)?
d. What is your diagnostic criteria for Cushings?
i. Lab tests
ii. Physical symptoms
iii. Imaging
e. How many patients have you diagnosed with Cushings?
f. What surgeon(s) do you recommend and work with for your patients with tumors that are causing Cushings?
g. If Cushings is suspected, how can we work together to maximize testing to give us answers as quickly as possible? How can I most easily get my test results from your office?

10. Make sure your doctor is willing to support the amount of testing that may be necessary to allow you to begin to distinguish between high and low periods. Make sure your doctor is also willing to support multiple types of tests to appropriately rule in/out Cushings.

11. Create a binder and get copies of every single test. (Make additional copies of test results so that you have extra available to perhaps send in advance to a new doctor, or to be able to readily provide a copy during your appointment as necessary). Get copies of clinic notes as well. Organize them into the binder. My binder has the following tabs:
a. Spreadsheet that summarizes most relevant test results
b. Current medical history/summary of symptoms
c. Imaging reports
d. Cortisol test results (serum, salivary, ufcs)
e. Other lab results (including EKGs and other relevant tests)
f. Eyes (visual field tests, letter from eye doctor, etc)
g. Clinic Notes

12. Research tests. It is not uncommon for a test to be ordered or interpreted incorrectly.
13. MRIs are only tools. They can be interpreted differently by different people and they may not accurately identify the extent or location of a tumor.
14. Create a spreadsheet, or use a journal, to track symptoms daily. Log test results so that you can begin to see patterns. Symptoms may be as subtle as canker sores, or cracked lips or skin, a single pimple, or may be more obvious such as severe swings in mood and energy levels, insomnia, bad acne, etc. Write it all down and track it.
15. Test whenever you feel different.
16. Symptoms of a high for you may or may not match what is typically described for a high. You may experience a high differently. For example, achiness is frequently described as a low symptom, but it may occur during a high in your case. Tracking symptoms and correlating test results help to identify patterns of a high.
17. Start testing your own blood sugar to identify any possible blood sugar problems and to look for possible correlation between episodes of high blood sugar and high cortisol levels. This won't apply to everyone, and may not be useful in your case, but it was very helpful to me. A very good Walgreen's brand glucometer is only $20.
18. Get a blood pressure cuff and start checking your own bp at home. Look for patterns there as well.
19. Summarize test results for your doctor (PCP, endocrinologist, or even surgeon). Create a simple table that shows your relevant test results over time.
20. Collect photos that illustrate how your physical appearance has changed.

21. When researching surgeons, learn as much as you can about the different techniques and approaches. Some may seem similar, but there are differences that are important to understand.

22. When interviewing surgeons, the following questions may be helpful(mostly pituitary focused):
a. How will you approach the tumor?
b. What instruments are used? Endoscope? Microscope? Both?
c. What incisions are made?
d. Do you need to clear any kind of path within the nasal or sinus area for your instruments? How will you do that?
e. What stitches will I have?
f. Do you use a "fat plug"?
g. Do you use a lumbar drain?
h. Will there be any nasal packing?
i. How will my head be immobilized during surgery? (Is a "halo" used?)
j. Do you use Doppler to localize the carotid arteries? (not necessary in fully endoscopic procedure as I understand it)
k. Describe your approach to locating any tumor seen on the MRI, and what you will do to find any other tumors that may be in, on, or around the gland.
l. Under what circumstances might you find it necessary to remove either part of the pituitary gland, or all of it?
m. How many of these procedures have you done?
n. How long have you been performing this particular procedure?
o. What are some typical complications that occur with this procedure? How do you manage those complications?
p. Based on my MRI, is there anything in particular that might suggest greater risk of diabetes insipidus or other long term complications with this surgery?
q. Tell me what to expect in terms of post-operative pain and how it will be managed.
r. Is an ICU stay typically necessary?
s. How long can I expect to stay in the hospital?
t. Do you give steroids intra-operatively?
u. When do you test post-op cortisol levels? What is the cortisol replacement therapy protocol? If my endocrinologist is out of state, who will be monitoring that part of my testing and prescribing cortisol replacement as necessary?
v. When can I travel to return home?
w. What restrictions will I have once discharged? (Lifting, noseblowing, how I sleep, driving, exercise, etc)
x. How do I contact you if I should have any problems or concerns once discharged?
y. How will you communicate with my endocrinologist regarding the results of my surgery?
z. What is your protocol for following up with patients post-operatively?
aa. What is your rate of post-operative sinus infection?
bb. What is your rate of post-operative diabetes insipidus, both temporary and long-term?

23. These questions for your endocrinologist may be helpful once surgery is planned:
a. How will you determine my post-op cortisol replacement needs?
b. At what point will you recommend that I begin tapering my dose? What are your guidelines for each step in the weaning process?
c. Based on my case and your experience with other Cushings patients, what might I experience during the recovery period? How long before I feel "better"? What restrictions will I have?
d. When and how will you determine if other pituitary functions should be tested post-op? How will you test other pituitary functions post-op?
e. Do you provide a prescription for emergency injectible hydrocortisone?
f. Do you provide written instructions I may carry for Emergency Room staff in the event that I have an adrenal crisis?
g. How long should I expect to be off work?
h. How will you follow up with me post-op?
i. What is the best way to reach you if I have any questions or concerns after surgery?

24. Participate on the Cushings Boards to support yourself and others through the Cushings diagnosis and treatment journey. (You'll also make some new friends.)

Read story →    3 comments    -----

MD Anderson surgery tips

Feb 01 2010 10:11 AM | missaf in Useful Information

My MD Anderson surgery tips


1) After all your records are with IMCC, you'll get a number to call to schedule surgery. They will give you all the details they think you need (isn't much). Be sure to get your medical record number, you'll need to memorize it. Ask the scheduler for a Wednesday surgery date if possible. You'll get to fly in on Monday night, Marathon Day on Tuesday, surgery Wednesday, and you can be home by Sunday if everything goes perfect.

2) Call MD Anderson Travel and check their ticket prices once you have your Medical Record number. They can get you a ticket that won't charge for changes if you need to change your flight for whatever reason. This saved me a heap of money because I needed to be inpatient 10 days instead of 4.

3) The travel people can also book you a hotel, or you can do the research on your own. You'll need at least two nights before surgery, a place for your guests to stay while you're in (the lowest number of days in patient is 4 days), and I recommend at least a night or two in town to make sure everything is okay before you fly home. Those extra days post-op make flying home SO much easier. Extended stays are nice, but you incur more cab fare. The Rotary House is amazing and comfortable.

4) Have all your questions for IMCC (and your family, too) written down so you don't forget. He'll spend as much time as you need. We call it Marathon pre-op day because you'll have lots of appointments all in a row. Use this website to help you find your way around. It works well!

http://access.mdande...FTOKEN=16468369

You can also access your medical records online with my.mdanderson.org.


5) Bring all your meds with you. Sometimes they don't have the ones we need as Cushies, and they'll tap into yours and replace them when they get the meds in stock. This includes your take home meds, emergency kit, etc...

6) If an MD Anderson Endo comes into your room, tell your family, the floor nurses, the residents, EVERYONE that you're a Cushing's patient and only IMCC will be treating your endo needs after surgery. I can't stress that enough. Ask Paula what you should do if an Endo comes in to treat you.

7) Don't overpack. You won't need much. Travel size toiletries for your first shower post-op (I wait until the balloons are out, much more relief that way), PJs to change into after your first shower, iPod to drown out hospital noise, etc.. I bring candy and put it in a dish in my room -- the nurses and doctors come in to visit just to get candy! A light ice pack will feel good on your face or behind your neck.

8) Take advantage of all the patient services, beauty salon, massages for you and your family, library, etc... They are WONDERFUL

9) They do screw your head to the table in 3 places. It sounds kinda archaic, but it's not bad. Just remember you're going to wake up with 3 sore spots on your head.

10) the pain is going to be different than other surgeries, but ask for pain meds if you need them. I needed morphine every 2.5 hours the first night, then every 4 hours during the next day. Vicodin worked after that, but it tends to bind you up more often. Start Colace tabs before you go to help with stool softening, and if you haven't had a BM within 2 days of surgery, ask them for stronger stuff to help you. You'll want a nice soft BM for a while!

11) On Day 2 they with hold your afternoon cortisol to check your blood on day 3. Ask for Phenergan to help you sleep (and gets rid of nausea), or Zofran to help with nausea. I projectile vomited across the room and it wasn't pretty!

12) The plane ride home is a little rough sometimes. A Xanax will help you relax (take it after you get on the plane), and ask for some Zofran in case you get queasy on the plane.

13) Use wheelchairs at Houston airport! Just request a wheelchair and they'll wheel you everywhere you need to go. I did this both times and it was a life saver both times. It is much easier on your family too. Wear your compression stockings on the plane -- the ones they put on your legs in the hospital.

14) the best rule with family: You need them more after surgery than you do during. The family waiting room is comfie with computers and nice soft chairs, so be sure your family is getting rest. That first day you need an advocate, a gofer, and someone to make sure you get your pain meds. They won't get much sleep in your room the first two nights, so shifts are good so they can go back to the hotel and get some real sleep.

15) Family gofers: chapstick, water, ice, foot rubs, cool wash cloths, etc... Let them do for you to make you feel more rested and comfortable. With the balloons in your nose the chapstick is a lifesaver. I prefer the Bigelow lip balm (From bath and body works) because it lasts forever.

....

Read story →    2 comments    -----

Drugs that might interfere with Cushing's t...

Jun 07 2011 01:10 PM | MaryO in Useful Information

from The Diagnosis of Cushing's Syndrome: An Endocrine Society Clinical Practice Guideline. Authors: Lynnette K. Nieman, Beverly M. K. Biller, James W. Findling, John Newell-Price, Martin O. Savage, Paul M. Stewart, and Victor M. Montori

View attachment: drugs-interfere.png

Read story →    3 comments    -----

Article on Episodic Cushings

Jun 15 2011 04:35 PM | SusanM in Useful Information

Found this article today on Dr. F's website and think it is very helpful. It has quite a bit of research data which is interesting and many of us have contributed to that data! Enjoy.

http://www.goodhormo...ushings-hmr.pdf

Title: 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


Read story →    3 comments    -----

The boards need *YOUR* Help

Dec 08 2011 04:19 PM | MaryO in Useful Information

After the board move/upgrade the Donations and Subscriptions are different. I can no longer use the Donation Tracker I had bought for the last version of the board. A very simple one can be seen here, top right http://cushings.invi...dex.php?act=idx I don't know if it will show donors after there have been any or not.


Donations of any amount can be made through that link. Donations and subscriptions of fixed amounts can be found in the "Store" at http://cushings.invi...x.php?app=nexus and in Your Profile. Click on your user name at the top right of any page. That's where Your Profile can be found, same as the old board. From there, click on the "Client Area" or http://cushings.invi...&module=clients

The spreadsheet Want to know where your donations go? has been updated to reflect the new costs for this board and what it will cost in 2012. No expenses other than board ones have been entered yet.

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