Saturday, January 29, 2011

Meditate vs. Surgery?

This article does a good job of describing what happens to a society that is stressed out. Mediation may help many. For a patient with Cushing's, it is not so simple. We can not meditate our tumors away. Friends, families, and doctors tell Cushies to relax, calm down, and destress. An undiagnosed Cushie may try but will fail. A diagnosed Cushie or one currently testing for Cushing's can only wish we had that much control -- or any control -- over the excessive cortisol our bodies make. Without our permission, cortisol ravishes our bodies and mucks up all of our other hormones. For us, peace only comes when all tumors are removed from our bodies.

Please Meditate: Inner Peace Can't Wait

http://www.huffingtonpost.com/olivia-rosewood/please-meditate-inner-pea_b_801...

Brains at Yale Get Spruced Up

Love this! Dr. Harvey Cushing and his awesome brain collection are getting their rightful place at Yale. I can't wait to get better and lead a pilgrimage of Cushies to the Cushing Center. How amazing would that be? Maybe we could get the NYT to cover us? What a story and spectacle.

http://blogs.wsj.com/ideas-market/2011/01/24/brains-at-yale-get-spruced-up/

p.s. See my original post at http://cushingsmoxie.blogspot.com on August 29, 2010.

Thursday, January 27, 2011

Obese American goes to India for gastric bypass; doctors find brain tumor

Plain ol' Obesity or Cushing's?

Weight loss surgery is not for everyone. If you have Cushing's, the docs are jacking with the wrong organ. That will definitely NOT make you better.

When I see an obese person, I never just see an obese person. I look for signs of cushing's. It's actually shocking to see so many with the tell tale buffalo hump, red cheeks, acne, bruising, skinny arms and legs. Cushies are everywhere. I just wish I could stop and talk to every one that I see, to make sure they get checked for Cushing's. I stop and discuss when I can, but alas,  there are just not enough minutes in the day. 

Have some empathy folks. You never know the struggles of those around you. -mm

**********

In the unique case which will strengthen the confidence of the World in the abilities of Indian doctors, team of specialist Fortis Hospitals Mulund correctly diagnosed and treated a 35 year old US national Ms Michelle Hardin of brain tumor. The US doctors had earlier diagnosed the condition as a case of obesity and recommended Gastric Bypass Surgery.

click to learn more

In the last few years Ms Hardin’s weight increased from 190 pounds to 300 pounds (86 kg to 136 kg). She also suffered from diabetes and hypertension. “I tried various diet control measures but to no avail. Also I had excessive thirst and would drink almost 8 liter of liquid daily and would feel always hungry. My obesity caused breathing difficulty (sleep apnea) and for which I used a special machine (CPAP Machine) to keep oxygen under pressure. Seven months back I took an expert opinion in US, where I was asked to undergo Gastric Bypass Surgery (GBS) to treat obesity. Since GBS was very expensive in US, I thought of undergoing the treatment in India.” Ms Hardin

Ms Hardin decided to visit Fortis Hospital to consult Dr Ramen Goel who has a vast experience of performing thousands of advanced laparoscopic surgeries including bariatric surgeries.

“Ms Hardin visited us with the known fact that she had to undergo Bariatric surgery through Gastric Bypass method. Detailed investigations at the hospital however revealed that she actually had a Pituitary Tumor on the right side of the pituitary gland of about 1cm in diameter. The weight gained was actually because of this pituitary tumour and not because of any case of obesity. I referred her to Dr Milind Vaidya, Consultant Neurosurgeon who has an expertise to remove the tumour through minimally invasive procedure.” said Dr Ramen Goel.

Dr. Milind Vaidya, Consultant Neurosurgeon, Fortis Hospitals Mulund said, “The tumor, situated in pituitary gland at the base of the brain, triggered excessive production of cortisol hormone by the adrenal glands leading to complications like uncontrolled diabetes, hypertension and weight gain. We treated her by transnasal- transsphenoidal excision of the pituitary tumor (a minimally invasive procedure) on 14th Jan 2011.”

Dr Vaidya used an endoscope & microscope to reach the tumour through her nostrils. He used both the nasal openings to reach the tumour to avoid incision or scar. He took special care to remove every bit of the tumour, to achieve cure and preserve the normal pituitary gland.

Ms Hardin had an uneventful excision of the right sided tumor and the normal pituitary on the left side was left untouched. Her nasal pack has been removed and she is doing well post-operation, with diabetes & hypertension under good control.

“I was shocked to learn that I suffered from tumour. I thank the doctors of Fortis Hospital. Had there been no timely intervention from them I wouldn’t know what would have happened to my life. Post operative my thirst & appetite have reduced markedly to normal levels. Doctor assured that my weight will be restored to normalcy gradually.” Ms Hardin.

According to Dr Vaidya, “Ms Hardin’s life is today safe and secure only because of timely detection. Had we continued the treatment of GBS or had we wrongly diagnosed the case, her condition could have been critical. Hence timely detection and right expertise is very crucial. This case is a testimony to the quality and credibility of Indian Healthcare expertise.”

Today India is considered as the best treatment destination by foreign patients as they can avail the finest medical facilities at affordable rates. Fortis has partnered with Indushealth in the US who has played a significant role in helping many such international medical travelers avail quality healthcare services at Fortis.

From http://fortishospitals.wordpress.com/2011/01/25/diagnosed-for-obesity-surgery-in-the-us-35-year-old-american-lady-weighing-136-kg-was-correctly-detected-of-brain-tumor-at-fortis-hospitals-mulund/

This blog post is posted from Cushing's & Cancer at http://cushingshelp.blogspot.com/

Friday, January 21, 2011

Fighting Fire with Fire? Just leave me alone!

My knees have been burning so much today. I sit in a chair, with my legs bending naturally at the knee and hanging down. The muscles on the side of both knees burn like they are on FIRE within 30 seconds. I have to straighten them out to relieve the pain. Rinse. Repeat. Other times, I sit with my legs up in the recliner, keeping my legs straight in an effort to avoid the burning. When I let my feet down to stand, my knee joints are so stiff I can hardly walk. Boo. I hate you, Cushing's disease.

Thursday, January 20, 2011

Doctors unlikely to spot Cushing's

That degree on the wall means your physician graduated medical school. It DOES NOT tell you which ones made As and which ones made Ds.

--mm

Physicians can perform poorly when patients need special care, study suggests.

"Physicians did quite well at following guidelines or standard approaches to care, but not so well at figuring out when those approaches were inappropriate because of a particular patient's situation or life context."

So, to me, this reinforces the need for cushing's patients to become an expert about the disease and advocate for the improvement of their health. Docs are less likely to put all of the pieces together, but when they do, the good ones do it in the same amount of time it takes a bad one to blow you off! 

Take a look on the sidebar for the link for Tips to Get Diagnosed Quickly.

Wednesday, January 19, 2011

Anxiety and Endocrine Disease

This is a fascinating literature review about the classic chicken-and-egg debate for endocrine patients. Doctors insist my depression, weight gain and not wanting to interact with others is related to my ANXIETY instead of my anxiety being one of many symptoms of my ENDOCRINE disorder.

"In reviewing patients who were felt to suffer from psychiatric symptoms caused by primary physical illness, Hall et al found that neurological and endocrine disorders were etiologically responsible for half of the medically induced anxiety symptoms encountered."

HALF?! These MDs need to get with the program! Listen to your patients!  When patients say they feel anxious and depressed and we tell you that we *tried* all of the stress reducing advice and we are still anxious, keep digging and thinking until your patients feel better. What a concept! Please do not make assumptions that we are lying or over-exaggerating just because you don't know the answer. Figure it out, as it is literally the reason you get paid the big bucks.  The weight of this burden should not just fall on our shoulders, but on yours as well.

-mm

"The first step in defining whether an anxiety disorder is due to a general medical condition is to establish the presence of a general medical condition that is often associated with the production of anxiety symptoms. The DSM-IV defines the most common endocrinological conditions associated with anxiety states as hyper- and hypothyroidism, hypoglycemia, pheochromocytoma, and hyperadrenocorticism. Anxiety may also occur following the exogenous administration of estrogens, progesterone, thyroid preparations, insulin, steroids and birth control pills. Popkin, in addressing the issue of endocrine disorders presenting with anxiety, suggests that anxiety states frequently occur in association with adrenal dysfunction, Cushing's Disease, Carcinoid syndrome, hyperparathyroidism, pseudohyperparathyroidism, hyperglycemia, hyperinsulinemia, pancreatic tumors, pheochromocytoma and thyroid diseases including hyperthyroidism, hypothyroidism and thyroiditis. Popkin cautions that prospective, carefully controlled studies on the etiology of anxiety in these conditions are lacking. The studies that are cited are almost exclusively case reports. He argues for more structured and careful research into the organic basis of these conditions.

Jefferson and Marshall identified hyperthyroidism, hypoglycemia, pheochromocytoma, and hyperadrenalism as the medical illnesses most often associated with anxiety symptoms and most frequently misdiagnosed initially as a primary anxiety disorder.

Hall et al in a study of medically induced anxiety disorder found thyroid disorders, i.e., hyper- and hypothyroidism and thyroiditis, to be the most frequent medical conditions misdiagnosed as primary anxiety disorder.11 Other common medical causes for anxiety in their study included hypoglycemia, Addison's and Cushing's Disease, hyper- and hypoparathyroidism, and diabetes mellitus. Rarer causes included various virilizing tumors and hypo- and hyperpituitarism.

Differentiating Anxiety Associated with Medical Illnesses from Primary Anxiety Diseases

After the clinician has established the presence of a general medical condition known to be associated with significant anxiety symptoms, he/she should undertake a careful and comprehensive assessment of the factors necessary to link the two conditions. Although there are no absolute guidelines, certain associations are helpful in establishing this connection. Are the onset of the symptoms temporally related? Is there a temporal association between the exacerbation or remission of the general medical condition and the enhancement or abatement of anxiety symptoms? Do anxiety symptoms disappear when the primary medical condition is treated? Are features that are atypical of a primary anxiety disorder present such as the usual age of onset, the initial presentation, type of onset, or an absence of family history? The clinician should also judge whether the disturbances that are present may be better accounted for by the presence of a primary anxiety disorder, a substance induced anxiety disorder, or an adjustment disorder brought on by the diagnosis of a primary medical condition.

In earlier work, reviewing patients who were felt to suffer from psychiatric symptoms caused by primary physical illness, Hall et al found that neurological and endocrine disorders were etiologically responsible for half of the medically induced anxiety symptoms encountered. In comparing these patients to patients with primary anxiety disorders seen in clinic, certain characteristics differentiated the patients with organic anxiety from those who suffered from a primary or psychogenic anxiety disorder. 1.) Patients with anxiety secondary to underlying medical illnesses tended to have disease characteristic fluctuations in the severity and duration of their anxiety or panic attacks. 2.) There was a clear cut association between the progression of their anxiety and their underlying disease. 3.) Medically induced anxiety disorders were most likely to have onset before the age of 18 or after the age of 35 in patients with a negative personal and family psychiatric history of anxiety or affective disorders and in patients who had not previously suffered from anxiety symptoms."

Fitness fanatic goes from size 10 to 18 in weeks after pituitary gland tumour | Mail Online

Friday, January 14, 2011

Trip Recap

So much has happened in the last few days. I'm on the plane with 30 minutes left in my 3 hr non stop flight home. Cloud cover prevents me from seeing the kitties below, but we must be over Texas by now.

Many Cushing's patients travel from all over the US and Canada to receive treatment in Los Angeles. I'll provide more details later on that. So, I thought I'd share travel info with my Cushie friends in hopes of making their medical trip a tad more pleasurable.

Rather than tell the story chronologically, I decided to try to write in little bits and pieces. Some will be medical. Some will be touristy. Some will be my random thoughts, and that's allowed because it's my blog. :)

I lived in Los Angeles and Long Beach a decade ago. It has been the most favorite city that I've ever lived in. That's saying something, too. I have lived in 10 different cities since flying my mama's coup for college. My point? I love LA to pieces, and I'd love for you to experience the LA that I know and love.

Let's start with these wonderful plants--birds of paradise. They are everywhere, and they always a lovely reminder that the warm sun keeps the City of Angels exciting and exquisite. ~ mm

Monday, January 10, 2011

Making Good Use of our Time Away

If we have to spend thousands of dollars to travel to see Cushing's specialists, we should at least have some fun while we are at it.

I am super excited that Colin Firth, the actor, is getting his star on the Hollywood Walk of Fame this week!!! I am totally going!!! He is one of my favorites :) He is a total doll face.

Colin Firth
("Bridget Jones", "Pride and Prejudice")

Thursday, January 13, 2011 at 11:30 a.m.
(6714 Hollywood Blvd, near McCadden)

Cushies, you can check the schedule to see who will be here the week you have your appointment out here. Heck, you can schedule your doctor appointment around this schedule! Hahaha

CELEBRITIES ABOUT TO RECEIVE STARS ON THE HOLLYWOOD WALK OF FAME

The celebrities listed below will appear in person on Hollywood Blvd or Vine Street to receive their stars. (Except, of course, for those awarded their stars posthumously).

http://www.seeing-stars.com/Calendar/index.shtml#WalkOfFame

Life as a Cushie

I am starting a series, like a photo essay, trying to explain how Cushing's impacts my daily life. Today, I point out that the seat belt in the airplane is near the maximum allowed length. It's around my waist with but an inch to spare. Thankfully it is a little loose. I almost cried when I buckled up today. My stomach has gotten so big. I just don't feel like this is my body anymore. It has a mind of its own, following cortisol's instructions instead of mine.

Like other embarrassing or emotional debilitating moments with this disease, I acknowledge it, and I release it. These thoughts no longer serve me, and I'm doing the best I can. Fighting for myself. Trying to figure out a loop hole in the system to try to get myself better sooner. I have pushed myself all along. I will try to forgive myself and be more understanding of my situation in 2011. Kindness to all, including myself.

-mm

See? Flying High

Life as a Cushie

Heading for Help

I am sitting on a plane, headed to Los Angeles, CA. I hope that my search for a compassionate and knowledgeable doctor will end with my appointments this week.

Many Cushing's patients have guided my decision to try this doctor. He is a cushing's specialist. These patients blazed the path, and I thank them for all of their efforts to help fellow Cushies.

I will be updating from LA. I hope it will helpful and informative to go on my trip with me.

-- mm

Sunday, January 9, 2011

GET YOUR LABS THROUGH AN APP :)

I have a major issue with testing all the time for Cushing's. Besides the obvious hassle of *having* to test so much to prove that I am sick, I want my results ASAP.  I do not want to wait. I don't need a doctor to tell me what they mean (well, 90% of the time), and I certainly don't like asking the nurse or caller follow-up questions for no real answers. I have realized they are just reading or repeating what the doctor said. 

My life saving go-to websites are LabTestsOnline and Cushing's Help and Support message boards. I get so much more information in real terms that I can understand from these sites.  Then, I take what I learn and discuss it with my doctor at the next appointment.

So you can imagine my thrill in finding out Quest Diagnostics has a new free app called Gazelle. This app is available in select states and on the Apple® iPhone, iPod Touch, and BlackBerry® Curve, Bold, Tour, and Storm. Android is coming soon!

After registering with Quest Diagnostics, click lab results.  You will enter the date of service, doctor's name and phone number. You get an email confirmation that your request was received. Labs are not returned immediately, unfortunately.  They are emailed a few days after the request is made. The system emails it to the email addy in your profile. The abnormal values are highlighted in blue. Easy to read!  Plus, it's a good first step in my efforts to get all of my medical records digitized and easily accessible online. In addition, the patient can email the results to any email address. I email them to myself, and voila!   Digital copy :)  I am super pleased with this development.

Here is a link to all Quest Diagnostic apps.

I have an appointment with Quest for a blood draw this Wednesday.  After my appointment, I plan to enter the information into the app, so that I will have an email as soon as they are ready. I really hope this system is responsive and resolves my need-to-know inclinations.  It's my life, my labs, and I want them :).

Viva la digital revolution!

~mm

Saturday, January 8, 2011

HERstory: A look back

I wanted to share a post I wrote nearly one year ago. The  HerStory post shows my previous collage and how to make one for yourself.

~Moxie Melissa

Change's a-Comin'

You may notice that some recent posts are short and look different from my previous entries.  That's because I found a way to post to the blog more efficiently, which hopefully, translates to more often.  So!  I will be passing along all sorts of goodies: medical articles, trip updates, MRI results, etc.  I hope you are up for the traffic increase!  As always, you are welcome to email me at any time at moxiemelissa (at) gmail.com. :D

Friday, January 7, 2011

Erella's Story

Erella, who is featured in the last post, also has a one hour CBC 1999 documentary about her and her  introduction to the cushings world. It is 67 megs and you have to carefully follow instructions with rapidshare in the FREE DOWNLOAD area.http://rapidshare.com/files/441306528/01_Brain_Surgery_For_My_Soul.mp3

I want to thank Erella for sharing so much of herself and her story, as we all learn the most about Cushing's from other Cushies. 

Hugs to you, Erella.

Melissa

Cushing's documentary

Check out Erella's 30 minute documentary featuring her battle with Cushing's. http://www.erella.com/Video_Lightbox/index.html

SOS: Help a Cushie

26-year old Kathryn would like to hear from anyone with the same condition. She can be contacted by e-mailing kathrynanne1984@hotmail.co.uk

http://www.runcornandwidnesweeklynews.co.uk/runcorn-widnes-news/runcorn-widne...

Thursday, January 6, 2011

New test for the Growth Hormone Deficient?

AEterna Zentaris, Inc. (Nasdaq:AEZS) announced that it has reached agreement with the Food and Drug Administration (FDA) on a Special Protocol Assessment (SPA) for Solorel® (AEZS-130, macimorelin) which will enable the Company to complete the ongoing registration study required to gain approval as a diagnostic test for Adult Growth Hormone Deficiency (AGHD).

Aeterna Zentaris is a late-stage oncology drug development company currently investigating potential treatments for various cancers including colorectal, ovarian, endometrial cancer and multiple myeloma.