Harvey Cushing (April 8, 1869 – October 7, 1939) is considered to be the father of modern neurological surgery. In the early part of the 20th century, he developed basic techniques and instruments for operating on the brain and, as a result, founded the discipline as a distinct surgical speciality.
Cushing’s name is commonly associated with his most famous discovery, Cushing’s disease. In 1912 he reported in a study an endocrinological syndrome caused by a malfunction of the pituitary gland which he termed “polyglandular syndrome.” He published his findings in 1932 as “The Basophil Adenomas of the Pituitary Body and Their Clinical Manifestations: pituitary Basophilism”.
Before Cushing began his career, brain tumours were considered to be inoperable, and the mortality rate for any surgical procedure which involved opening the skull was around 90%. Early in his career, Cushing dramatically reduced the mortality rate for neurosurgery to less than 10%, and by the time of his retirement in 1937, he had successfully removed more than 2,000 tumours.
What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions. Make a calendar showing which days you had what symptoms. Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
In this video exclusive, Maria Fleseriu, MD, professor of neurological surgery and professor of medicine in the division of endocrinology, diabetes and clinical nutrition in the School of Medicine at Oregon Health & Science University and director of the OHSU Northwest Pituitary Center, discusses management of hypopituitarism during pregnancy and an upcoming study of effects of growth hormone supplementation.
Successful in vitro fertilization and even natural pregnancy are possible for women with hypopituitarism, according to Fleseriu.
“Our job as endocrinologists is to make sure that we’re focusing on replacing all the pituitary hormones at the right level,” she said.
Fleseriu outlines considerations for assessing hormone levels and determining which should be supplemented — before, during and after pregnancy — for a healthy delivery and healthy baby. GH may be one of these, she said, despite its off-label use.
April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.
Thanks to Robin for this wonderful past logo! I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.
As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year. More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.
How fitting that this challenge should begin on April Fool’s Day. So much of Cushing’s Syndrome/Disease makes us Cushies seem like we’re the April Fool. Maybe, just maybe, it’s the doctors who are the April Fools…
Doctors tell us Cushing’s is too rare – you couldn’t possibly have it. April Fools!
All you have to do is exercise and diet. You’ll feel better. April Fools!
Those bruises on your legs? You’re just clumsy. April Fools!
Sorry you’re growing all that hair on your chin. That happens as you age, you know. April Fools!
Did you say you sleep all day? You’re just lazy. If you exercised more, you’d have more energy. April Fools!
You don’t have stretch marks. April Fools!
You have stretch marks but they are the wrong [color/length/direction] April Fools!
The hump on the back of your neck is from your poor posture. April Fools!
Your MRI didn’t show a tumor. You couldn’t have Cushing’s. April Fools!
This is all in your mind. Take this prescription for antidepressants and go home. April Fools!
If you have this one surgery, your life will get back to normal within a few months. April Fools!
What? You had transsphenoidal surgery for Cushing’s? You wasted your time and money. April Fools!
I am the doctor. I know everything. Do not try to find out any information online. You could not have Cushing’s. It’s too rare… April FOOL!
All this reminds me of a wonderful video a message board member posted a while ago:
So now – who is the April Fool? It wasn’t me. Don’t let it be you, either!
I wrote parts of this in 2008 and other years, so all the “yesterdays” and “last weeks” are a little off. This year’s update is at the very bottom.
Wow. That’s about all I can say. Yesterday was possibly the best day of my life since I started getting Cushing’s symptoms, and that was over 25 years ago. A quarter of a century of feeling exhausted, fatigued. A quarter of my life spent taking naps and sleeping.
I went to the endo yesterday. Nothing has changed for me. Nothing will. He wants me to take more cortef. I don’t want to gain weight again. He looked up Provigil and it’s not indicated for panhypopituitarism. So he won’t prescribe it. My kidney surgeon probably won’t let me take, anyway, but it was worth a try.
…
He did mention that in “only” 2.5 years maybe I can go back on growth hormone. I don’t want to live like this another year let alone 2.5. But then, when I was on GH before it didn’t help me like it helps most everyone else.
I’m tired of catering to a kidney that may or may not fail sometime anyway, tired of being so exhausted all the time. I feel like I’ve lost nearly half my life to this Cushing’s stuff already.
So, yesterday I was supposed to go to a conference on web design for churches. My church sent me because they want me to spiff up their site and make them a new one for Christmas. I wanted to go because, well, I like learning new stuff about the web. I figured that I would learn stuff that would also be useful to me in others of my sites.
And I did!
But the amazing thing is this. My son had told me about a medication that was very similar to Provigil, that he had tried it while he was writing his doctoral thesis and it had helped him.
So, having tried the official doctor route and being rebuffed – again – I had decided to try this stuff on my own.
I was just talking to a friend today about how I’d try nearly anything – even if it ruined my one remaining kidney – to have a few days where I felt good, normal, where I could wake up in the morning rested and be able to have energy for the day.
I want to go out and have fun, to be able to drive for more than 45 minutes without needing to rest, to be have people over for dinner, whatever. I hate being restricted by my lack of energy.
My endo says to cheer up. In two and a half years I can try the growth hormone again. Whoopee. Didn’t work the first time and maybe gave me, or contributed to, cancer growth. Why would I want to look forward to trying that again?
I want to feel good now. Today.
I hate that this disease kills but I also hate that it’s robbed me of half my life already.
I wish doctors would understand that even though we’ve “survived”, there’s no quality of life there.
I hate Cushing’s. It robs so much from so many of us. 🙁
As I said earlier, I have a history of daily naps of at least 3 hours a day. It cuts into everything and prevents me from doing many things. I have to schedule my life around these naps and it’s awful.
A few years ago I went on a Cushie trip to Rockford. I’ve been there a few times and it’s always so much fun. But this first year, we were going to another Cushie’s home for a barbecue. I didn’t drive, I rested in the back of the car during the drive. We got there and I managed to stay awake for a little while. Them I put my head down on the dining room table and fell asleep. Our hostess kindly suggested that I move over to the sofa.
So, I have a long history of daily naps, not getting through the day, yadda, yadda.
So, I was a little nervous about yesterday. I really wanted to go to this conference and was afraid I’d have to go nap in my car.
I got up at 5:30 am yesterday. Before I left at 7:15, I took my Cortef and then I took my non-FDA approved simulated Provigil. (Although it’s not FDA approved, it is not illegal to possess without a prescription and can be imported privately by citizens)
I stayed awake for the whole conference, went to a bell rehearsal, did Stacey’s interview, had dinner and went to bed about 10:30PM. NO NAP! I did close my eyes a little during the 4:00PM session but it was also b-o-r-i-n-g.
I stayed awake, I enjoyed myself, I learned stuff, I participated in conversations (completely unlike shy me!).
I felt like I think normal people feel. I was amazed. Half my life wasted and I finally (thank you Michael!) had a good day.
My kidney doctor and my endo would probably be appalled but it’s about time that I had some life again! Maybe in another 25 years, I’ll take another pill. LOL
Well, the energy from the Adrafinil was a one-day thing. I felt great on Thursday. Friday and Saturday I slept more than usual. Saturday, today, was one of those days where I sleep nearly all day. Maybe if I took the drug more it would build up in my system, maybe not. But it was still worth having that one day where I felt what I imagine normal to be.
While I was being a slug today, my husband painted the entire house.
I’m not sure if I would have been this tired today or if I was somehow making up for the nap I didn’t get on Thursday. Whatever the case, I’m glad that I had the opportunity to try this and to experience the wonderful effects, if only for one day.
Information from a site that sells this:
Alertness Without Stimulation
Adrafinil is the prototype of a new class of smart drug – the eugeroics (ie, “good arousal”) designed to promote vigilance and alertness. Developed by the French pharmaceutical company Lafon Laboratories, adrafinil (brand name, Olmifon) has been approved in many European countries for treating narcolepsy, a condition characterized by excessive daytime sleepiness and other unusual symptoms.
Non-narcoleptic users generally find that adrafinil gives them increased energy and reduces fatigue, while improving cognitive function, mental focus, concentration, and memory. It has been reported that quiet people who take adrafinil become more talkative, reserved people become more open, and passive people become more active.
Of course, many stimulant drugs, ranging from caffeine to methamphetamine, are known to produce similar alerting/energizing effects. Adrafinil has been described by some users as a “kinder, gentler” stimulant, because it provides these benefits but usually with much less of the anxiety, agitation, insomnia, associated with conventional stimulants.
Adrafinil’s effects are more subtle than those of the stimulants you may be used to, building over a period of days to months. They appear to be based on its ability to selectively stimulate 1-adrenergic receptors in the brain.2 These receptors normally respond to norepinephrine (noradrenaline), a neurotransmitter linked to alertness, learning, and memory. This is in contrast to conventional stimulants, which stimulate a broader spectrum of brain receptors, including those involving dopamine. Its more focused activity profile may account for adrafinil’s relative lack of adverse side effects.
It’s interesting that that snipped report that people become more talkative. I reported that in the original post, too, even though I didn’t realize that this was a possibility.
A good quote that I wish I could relate to better:
“Time is limited, so I better wake up every morning fresh and know that I have just one chance to live this particular day right, and to string my days together into a life of action and purpose.”
Lance Armstrong (1971 – )
Cyclist, seven-time Tour de France champion and cancer survivor
2011 stuff starts here:
A while ago I went to a handbell festival. I took a bit of adrafinil on the main day to try to stay awake for the whole day. It didn’t seem to keep me as on as it did before. I can’t be used to it already. Maybe I’m just that much more tired than I was before.
Our son lives in New York and every few years he gives us tickets to see a Broadway show. A couple years ago we took the train to NY to see Wicked. Usually, my DH wants to go out and see sights while we’re there. I usually want to nap.
This time we got up on Saturday morning, went out for breakfast. I wanted to take in the whole day and enjoy Wicked so I took some Adrafinil. We got back to the hotel and got ready to go to a museum or other point of interest.
But, DH wanted to rest a bit first. Then our son closed his eyes for a bit…
So, I found myself the only one awake for the afternoon. They both work up in time for the show…
Sigh It was a great show, though.
A recent Christmas I was going to get my son some Adrafinil as a gift. The original place we bought it didn’t have any more stock so I tracked it down as a surprise. He was going to give me some, as well, but couldn’t get it from the original source, either. So he found something very similar called Modafinil. GMTA!
And 2016…
Saturday, 4/23/16 really was one of the best days I’ve had in a long time.
Suffice it to say, we arrived at the Tattoo and I got no nap at all, all day!
And 2017.
We just came home from a great weekend in New York City with our son. I haven’t written about it yet in my Travel Blog but will soon. I did put a bit about it in my Little Free Library blog (do I have too many blogs??) I was amazed to make it through the entire weekend with no Adrafinil – sadly, there’s nowhere to get it anymore. I carried extra cortisol, just in case. And slept all the way home on the train.
Last but not least, 2018.
We went back to the Virginia International Tattoo again and it was everything I remembered from 2016. A wonderful, but very exhausting time!
This time around we went to some of the band competition, then went back to the hotel for a nap before the show. Fortunately, most of the afternoon events were live-streamed on Facebook so I didn’t miss much.
All of the 2018 Tattoo is on YouTube already.
A couple of my favorite acts:
and
And the Finale:
When they showed the videos of the Medal of Honor recipients, I thought it was amazing. There is no way I could do any part of what they had done.
Just before leaving, I bought a teeshirt which said More Bagpipes.
When we got home this afternoon, it was a 4-hour nap.
It’s Sunday again, so this is another semi-religious post so feel free to skip it 🙂
I’m sure that many would think that Abide With Me is a pretty strange choice for my all-time favorite hymn, especially since it often shows up at funerals and memorial services.
My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years.
Some Sunday evenings, he would preach on a circuit and I’d go with him to some of these tiny churches. The people there, mostly older folks, liked the old hymns best – Fanny Crosby and so on.
So, some of my “favorite hymns” are those that I sang when I was out with my Dad. Fond memories from long ago.
In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years. I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.
I was terrified and sure that I wouldn’t survive the surgery.
Somehow, I found a 3-cassette tape set of Reader’s Digest Hymns and Songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me.
At NIH I set up a daily “routine” of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more.
When I had my kidney cancer surgery, those tapes were long broken and irreplaceable, but I had replaced all the songs – this time on my iPod.
Abide With Me was on this original tape set and it remains a favorite to this day. Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700. When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them. I sign page 700.
I think that many people would probably think that this hymn is depressing. Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here.
This hymn is often associated with funeral services and has given hope and comfort to so many over the years – me included.
If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you.
~John 15:7
Abide With Me
Words: Henry F. Lyte, 1847.
Music: Eventide, William H. Monk, 1861. Mrs. Monk described the setting:
This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth.
Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon:
O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ.
For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997.
Abide with me; fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.
Swift to its close ebbs out life’s little day;
Earth’s joys grow dim; its glories pass away;
Change and decay in all around I see;
O Thou who changest not, abide with me.
Not a brief glance I beg, a passing word;
But as Thou dwell’st with Thy disciples, Lord,
Familiar, condescending, patient, free.
Come not to sojourn, but abide with me.
Come not in terrors, as the King of kings,
But kind and good, with healing in Thy wings,
Tears for all woes, a heart for every plea—
Come, Friend of sinners, and thus bide with me.
Thou on my head in early youth didst smile;
And, though rebellious and perverse meanwhile,
Thou hast not left me, oft as I left Thee,
On to the close, O Lord, abide with me.
I need Thy presence every passing hour.
What but Thy grace can foil the tempter’s power?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.
I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness.
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.
Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies.
Heaven’s morning breaks, and earth’s vain shadows flee;
What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions. Make a calendar showing which days you had what symptoms. Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
The RARE Patient Advocacy Summit is the can’t-miss event of the year for rare disease stakeholders. The Summit will take place October 3-4 at the Hotel Irvine in Irvine, California, and it is the largest gathering of rare disease patients, advocates and thought leaders worldwide.
Take advantage of this opportunity to connect and learn from more than 200 experts in rare disease leading 100 educational sessions. This year, the Summit offers four specialized learning tracks to help you spark change including:
Living with a life-altering condition, before and after diagnosis
Becoming successful architects of your health and that of your disease community
Building on advances as a patient, partner, and driver in drug development
Learning about the latest science and technology that drive innovation
The RARE Patient Advocacy Summit offers many unique opportunities to support the rare community by participating in the largest educational event for rare patients and advocates. Together, we are strong. Join Global Genes, partners and rare disease community members from all walks of life to become equipped with the tools needed to persevere and thrive on our paths forward!
Click here to view and download an up-to-date PDF of our full Summit Agenda. New speakers and sessions will be added each week, so be sure to check back before finalizing your Summit plans.
Each year, dozens of exhibitors in the rare disease space congregate at the Summit to provide patients with information, tools and resources to help them along their journey. If you’d like to register as an exhibitor, click here. Space is limited so be sure to register ASAP.
We’re so glad you are joining us at the Summit! We’ve put together a helpful list of places to stay, directions, and everything else out-of-towners need to know to plan their trip. Click here for a comprehensive Summit travel guide.
Can’t attend the Summit in person? Don’t worry, you can view the event on Livestream! Click here to register.
April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.
Thanks to Robin for this wonderful past logo! I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.
As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year. More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.
How fitting that this challenge should begin on April Fool’s Day. So much of Cushing’s Syndrome/Disease makes us Cushies seem like we’re the April Fool. Maybe, just maybe, it’s the doctors who are the April Fools…
Doctors tell us Cushing’s is too rare – you couldn’t possibly have it. April Fools!
All you have to do is exercise and diet. You’ll feel better. April Fools!
Those bruises on your legs? You’re just clumsy. April Fools!
Sorry you’re growing all that hair on your chin. That happens as you age, you know. April Fools!
Did you say you sleep all day? You’re just lazy. If you exercised more, you’d have more energy. April Fools!
You don’t have stretch marks. April Fools!
You have stretch marks but they are the wrong [color/length/direction] April Fools!
The hump on the back of your neck is from your poor posture. April Fools!
Your MRI didn’t show a tumor. You couldn’t have Cushing’s. April Fools!
This is all in your mind. Take this prescription for antidepressants and go home. April Fools!
If you have this one surgery, your life will get back to normal within a few months. April Fools!
What? You had transsphenoidal surgery for Cushing’s? You wasted your time and money. April Fools!
I am the doctor. I know everything. Do not try to find out any information online. You could not have Cushing’s. It’s too rare… April FOOL!
All this reminds me of a wonderful video a message board member posted a while ago:
So now – who is the April Fool? It wasn’t me. Don’t let it be you, either!
