JenS talks about BLA (bilateral adrenalectomy) and more

[~MaryO~]

JenS, February 28, 2008, 7:30 PM Eastern. Jen had Pituitary surgery by Dr. S. 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma. She was diagnosed by Dr. Ted F. as cyclical pituitary Cushings. Her second Surgery 7/21/04 for infection resulted in neuralgia. She had a BLA in March 2006 as Corticol Hyperplasia returned and she now has possible Nelson's syndrome.

 

Jen also has Thyroid Issues (Hashimoto's, multiple nodules and entire thyroid removed 2003) and she is Growth Hormone Deficient (3/2006); Panhypopituitary (5/2007). Her latest medical issues are possible Myasthenia Gravis or other motor neuron issue (7/2007) and Hypoparathyroid (9/2007)

 

Jen will talk about Bilateral Adrenalectomies (BLAs) and answer your questions.

 

 

The Call-In number is (646) 200-0162

 

 

 

[~MaryO~]

Reminder! Tune in tonight at 7:30 Eastern to hear Jen talk about BLAs, and maybe I'll mention singla adrenalectomy from somewhere in the background.

 

The call-in number, as always, is (646) 200-0162

 

Podcasts available on iTunes and your TiVos about 9PM

 

Past episodes listened to on BlogTalk Radio - who knows how many more on iTunes and on the podcast feeds?

 

[fibroBeck]

Mary thanks for all you do for us and those who don't yet know what Cushings is! You are saving lives every day!

 

Hope to be able to listen in tonight.

 

Hugs,

 

Becky

[~MaryO~]

Jen's outline of what she plans to talk about:

 

Bilateral Adrenalectomy

 

- option after pituitary surgery has failed but has been a treatment in place of pituitary surgery.

 

- option in place of pituitary surgery

 

- Can be unilateral in case of adrenal tumor.

 

- risk of Nelson?s Syndrome

 

- (Nelson?s Syndrome is characterized by high ACTH , usually over 1000, dark skin and growth of pituitary lesion)

 

- Generally two types of adrenalectomies

 

- OPEN 10-12 inch incison on each side

 

- Laprascopic ? number of incisions varies by surgeon ? can be 6, 8 12, abdominal area is inflated with inert gas so surgeon has room to move, and adrenals are removed via small instruments.

 

- Walking after the surgery will help alleviate the pain and dissapate the gas.

 

- During surgery, patient is given 100mg of solu-cortef or solu-medrol.

 

- Post-op, one has adrenal insuffiency.

 

- Adrenals controls salt regulation so increasing that in the diet helps

 

- The following information is general information ? please follow your doctor?s instructions. Doctors have different preferences on replacement hormones.

 

- After surgery one must take replacement cortisol, usually, hydrocortisone

 

- A normal body would have its highest cortisol levels in the morning, about half that in the late afternoon, with little to nothing in middle of the night. Dosages are usually divided to mimic the body?s rhythm as closely as possible.

 

- Of course, post op, the patent is recovering and dosages are higher for a time to aid healing. This is called stress dosing.

 

- Stress dosing is done when you have surgery, have a fever, are sick, feel nauseous, or at the direction of your doctor. Caution should be applied. Too little cortisol is harmful and as well, too much is harmful as that defeats the purpose of having the adrenals out. This was the hardest part of having the adrenals out ? figuring this out. It still is.

 

- In case you run into trouble, it is a good idea to carry an ?emergency kit?. A typical emergency kit contains an injectable form of hydrocortisone, a needle and syringe, alcohol pads, emergency letter from the doctor giving instructions to the emergency room, and a list of phone numbers to call. I also added to my kit a few anti-nausea pills and some hydrocortisone pills.

 

- Another good idea is to wear a bracelet that identifies you emergency personnel that you have an urgent medical issue. It is best to list if as adrenal insuffiency ? steroid dependent ? or even that you have had adrenalectomies so that it is clear to them that you need medical attention immediately. Unfortunately, paramedics are not allowed to administer steroids so it would help to train a spouse or friend to give you a shot. This will allow you the time to safely get to the hospital.

 

- In general, you may also need to take a mineralcorticosteroid called Florinef (although the brand has been discontinued). Salt tablets are also very helpful to keep up energy and hydration.

 

- I did not begin to lose weight until 4 months afterwards. Post op, I lost my appetite completely.

 

- Weaning, which is the changing of doses after surgery or illness, is now easy for me but for other BLA patients, has remained difficult.

 

- Doctors in general target a dose of hydrocortisone between 15-30mg. as being optimal.

 

- ACTH levels post adrenalectomies will sometimes be higher that normal ? sometimes averaging around 400 (6-27). This will darken the skin.

[lesley]

that was soooo cool! Jen you were great-

 

hope to hear from you soon!!

 

lesley

[~MaryO~]

Jen, you did great! Thank you so much!

 

Jen's chat is on iTunes now for those who are subscribing there

 

Well done!!!

[~MaryO~]

Thanks, Becky - I don't always remember to look in the chat area, but the comments in there add a lot to the chat.

 

I'll try to be better about that in the future - I'm getting a bit less nervous about doing these.

 

I heard another chat archive where the host read the names of the people in the chatroom and was more interactive with that. These chats are just going to get better and better over time as we learn more about what we're doing!

 

Thanks!

[gumdrop]

Excellent job!

[Flojo3]

Hi Jen and Mary:

 

I just listened to your broadcast today and want to thank you for all the great information you shared. As one who is facing removal of a tumor on my left adrenal soon, I found the topic very timely and reassuring. Thanks again for all your efforts.

 

JoAnn